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  • Trisha Williams
    Ok... I ve been a little strange (stranger?) lately. Have any of you done this? I know I sound like a fruitcake writing this, but I wouldn t tell anyone
    Message 1 of 16 , Dec 4, 2004
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      Ok... I've been a little strange (stranger?) lately. Have any of you done
      this? I know I sound like a fruitcake writing this, but I wouldn't tell
      anyone but you guys and maybe the doctor.

      It seems that my surgical area is "under pressure" or pulling and
      uncomfortable. I sense I can "feel" something inside my head that's not
      supposed to be there. My headaches are horrible, as before, but more
      frequent. My dreams all revolve around the tumor coming back, at least all
      the dreams I remember. I can't remember having a dream without being in the
      hospital or having a seizure or something around death and tumors. I have a
      twitch in my left eye that won't go away and the thing that scares me about
      that is that I had one in my other eye for weeks before they discovered my
      tumor... naturally, I can't get out of my mind that there must be a new one
      in the other side now.

      Part of me thinks I'm imagining all this, part of me thinks it's time to go
      for an early MRI and part of me thinks I'm tired of thinking about it...
      know what I mean? This has been going on for about 2 months and for some
      reason I am afraid to tell my family (all they'll say is "you're fine",
      "it's not coming back" "stop thinking about it or you'll make it come back")
      I know they mean well, but I'm getting somewhat confused and needed to vent.

      My next MRI isn't due until March of next year. I'm trying to just wait
      until then and see what happens but I am having trouble deciding if I should
      go early.

      I'm so glad you guys are here. Am I crazy or do you guys get this way
      sometimes?

      Hesitating while pushing the "send" button,
      Trisha


      [Non-text portions of this message have been removed]
    • pal22222@aol.com
      In a message dated 12/4/04 8:39:45 AM Eastern Standard Time, trisha4080@adelphia.net writes: My next MRI isn t due until March of next year. I m trying to
      Message 2 of 16 , Dec 4, 2004
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        In a message dated 12/4/04 8:39:45 AM Eastern Standard Time,
        trisha4080@... writes:
        My next MRI isn't due until March of next year. I'm trying to just wait
        until then and see what happens but I am having trouble deciding if I should
        go early:+++++++++++++++SNIP
        Hi Trish,
        Discuss your fears with your Doctor? Tell him how long you have been
        feeling this new sensation and discuss an early MRI since your having nightmares and
        its interfering with your sleep? I am due in March also for mine and I know
        the feeling of waiting just three months and it feels like eternity. I had a
        twitch in my eye also for over a month before they discovered my tumor. I
        don't remember the eye but I think it was the right one. Keep us updated on what
        you do but no sense holding it in discuss it with your Doctor?
        Paula in Massachusetts


        [Non-text portions of this message have been removed]
      • Karen Catlin
        Dear Trish, we all suffer fear, with each new twitch of a muscle, to us its significant, where to someone who never had one of these it goes un-noticed. I say
        Message 3 of 16 , Dec 4, 2004
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          Dear Trish, we all suffer fear, with each new twitch of a muscle, to us its
          significant, where to someone who never had one of these it goes un-noticed.
          I say get the MRI now. There is no sense in suffering when you can find out
          one way or another right now.
          I can not expand much on the dreams because I dont remember mine.
          My trigeminal nerve is under so much pain I could literally shoot my head
          off. My MRI is fine. I dont know what I am gonna do.
          Taking Dilaudid, Tegretol 1200mg day, and Baclofen, which is new. Still in
          pain. Trying to work. ewwwww
          Give yourself the gift of MRI for Christmas if you want, peace. The
          headaches and the twitch should be enough to get one authorized. Much Love
          to you. Karen
          ----- Original Message -----
          From: "Trisha Williams" <trisha4080@...>
          To: "BrainSurgery@yahoogroups. Com" <BrainSurgery@yahoogroups.com>
          Sent: Saturday, December 04, 2004 8:35 AM
          Subject: [BrainSurgery] question


          >
          > Ok... I've been a little strange (stranger?) lately. Have any of you
          > done
          > this? I know I sound like a fruitcake writing this, but I wouldn't tell
          > anyone but you guys and maybe the doctor.
          >
          > It seems that my surgical area is "under pressure" or pulling and
          > uncomfortable. I sense I can "feel" something inside my head that's not
          > supposed to be there. My headaches are horrible, as before, but more
          > frequent. My dreams all revolve around the tumor coming back, at least
          > all
          > the dreams I remember. I can't remember having a dream without being in
          > the
          > hospital or having a seizure or something around death and tumors. I have
          > a
          > twitch in my left eye that won't go away and the thing that scares me
          > about
          > that is that I had one in my other eye for weeks before they discovered my
          > tumor... naturally, I can't get out of my mind that there must be a new
          > one
          > in the other side now.
          >
          > Part of me thinks I'm imagining all this, part of me thinks it's time to
          > go
          > for an early MRI and part of me thinks I'm tired of thinking about it...
          > know what I mean? This has been going on for about 2 months and for some
          > reason I am afraid to tell my family (all they'll say is "you're fine",
          > "it's not coming back" "stop thinking about it or you'll make it come
          > back")
          > I know they mean well, but I'm getting somewhat confused and needed to
          > vent.
          >
          > My next MRI isn't due until March of next year. I'm trying to just wait
          > until then and see what happens but I am having trouble deciding if I
          > should
          > go early.
          >
          > I'm so glad you guys are here. Am I crazy or do you guys get this way
          > sometimes?
          >
          > Hesitating while pushing the "send" button,
          > Trisha
          >
          >
          > [Non-text portions of this message have been removed]
          >
          >
          >
          >
          > ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN THE
          > PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***
          >
          > Community email addresses:
          > Post message: BrainSurgery@...
          > Subscribe: http://groups.yahoo.com/group/BrainSurgery
          > Unsubscribe: Trisha4080@...
          > List owner: Trisha4080@...
          >
          > Shortcut URL to this page:
          > http://health.groups.yahoo.com/group/BrainSurgery
          > Yahoo! Groups Links
          >
          >
          >
          >
          >
          >
          >
        • chris_fren@direcway.com
          ok i think you should go get checked earlier better safe than sorry. hubby use to think i was crazy to make him go to the dr when i thought something was
          Message 4 of 16 , Dec 4, 2004
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            ok i think you should go get checked earlier better safe than sorry. hubby use to think i was crazy to make him go to the dr when i thought something was wrong. in the long run it doesn't hurt to go. by the way Trisha hi & hi to everyone else in the group. best wishes for the holidays.chris
            ----- Original Message -----
            From: Trisha Williams <trisha4080@...>
            Date: Saturday, December 4, 2004 8:35 am
            Subject: [BrainSurgery] question

            >
            > Ok... I've been a little strange (stranger?) lately. Have any
            > of you done
            > this? I know I sound like a fruitcake writing this, but I
            > wouldn't tell
            > anyone but you guys and maybe the doctor.
            >
            > It seems that my surgical area is "under pressure" or pulling and
            > uncomfortable. I sense I can "feel" something inside my head
            > that's not
            > supposed to be there. My headaches are horrible, as before, but more
            > frequent. My dreams all revolve around the tumor coming back, at
            > least all
            > the dreams I remember. I can't remember having a dream without
            > being in the
            > hospital or having a seizure or something around death and tumors.
            > I have a
            > twitch in my left eye that won't go away and the thing that scares
            > me about
            > that is that I had one in my other eye for weeks before they
            > discovered my
            > tumor... naturally, I can't get out of my mind that there must be
            > a new one
            > in the other side now.
            >
            > Part of me thinks I'm imagining all this, part of me thinks it's
            > time to go
            > for an early MRI and part of me thinks I'm tired of thinking about
            > it...know what I mean? This has been going on for about 2 months
            > and for some
            > reason I am afraid to tell my family (all they'll say is "you're
            > fine","it's not coming back" "stop thinking about it or you'll
            > make it come back")
            > I know they mean well, but I'm getting somewhat confused and
            > needed to vent.
            >
            > My next MRI isn't due until March of next year. I'm trying to
            > just wait
            > until then and see what happens but I am having trouble deciding
            > if I should
            > go early.
            >
            > I'm so glad you guys are here. Am I crazy or do you guys get this way
            > sometimes?
            >
            > Hesitating while pushing the "send" button,
            > Trisha
            >
            >
            > [Non-text portions of this message have been removed]
            >
            >
            >
            > ------------------------ Yahoo! Groups Sponsor --------------------
            > ~-->
            > $4.98 domain names from Yahoo!. Register anything.
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            > -------------------------------------------------------------------
            > -~->
            >
            > ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE
            > IN THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***
            >
            > Community email addresses:
            > Post message: BrainSurgery@...
            > Subscribe: http://groups.yahoo.com/group/BrainSurgery
            > Unsubscribe: Trisha4080@...
            > List owner: Trisha4080@...
            >
            > Shortcut URL to this page:
            > http://health.groups.yahoo.com/group/BrainSurgery
            > Yahoo! Groups Links
            >
            >
            >
            >
            >
            >
            >
            >
          • Trisha Williams
            Thank you all for your input. I think I will call the doctor this week and get it over with. It would be a better Christmas knowing everything was ok... I
            Message 5 of 16 , Dec 4, 2004
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              Thank you all for your input. I think I will call the doctor this week and
              get it over with. It would be a better Christmas knowing everything was
              ok... I guess I'm just afraid that it would be a tough Christmas if it
              isn't. Plus, I take my daughter (22 this year) on a birthday trip each year
              and I'd hate to have something happen while I was in Cancun.

              Somehow, I feel better. Thanks for not giving me the typical "don't worry
              about it" that I seem to get from everyone else...

              Love to you all,
              Trisha
              -----Original Message-----
              From: chris_fren@... [mailto:chris_fren@...]
              Sent: Saturday, December 04, 2004 9:09 AM
              To: BrainSurgery@yahoogroups.com
              Subject: Re: [BrainSurgery] question


              ok i think you should go get checked earlier better safe than sorry. hubby
              use to think i was crazy to make him go to the dr when i thought something
              was wrong. in the long run it doesn't hurt to go. by the way Trisha hi & hi
              to everyone else in the group. best wishes for the holidays.chris
              ----- Original Message -----
              From: Trisha Williams <trisha4080@...>
              Date: Saturday, December 4, 2004 8:35 am
              Subject: [BrainSurgery] question

              >
              > Ok... I've been a little strange (stranger?) lately. Have any
              > of you done
              > this? I know I sound like a fruitcake writing this, but I
              > wouldn't tell
              > anyone but you guys and maybe the doctor.
              >
              > It seems that my surgical area is "under pressure" or pulling and
              > uncomfortable. I sense I can "feel" something inside my head
              > that's not
              > supposed to be there. My headaches are horrible, as before, but more
              > frequent. My dreams all revolve around the tumor coming back, at
              > least all
              > the dreams I remember. I can't remember having a dream without
              > being in the
              > hospital or having a seizure or something around death and tumors.
              > I have a
              > twitch in my left eye that won't go away and the thing that scares
              > me about
              > that is that I had one in my other eye for weeks before they
              > discovered my
              > tumor... naturally, I can't get out of my mind that there must be
              > a new one
              > in the other side now.
              >
              > Part of me thinks I'm imagining all this, part of me thinks it's
              > time to go
              > for an early MRI and part of me thinks I'm tired of thinking about
              > it...know what I mean? This has been going on for about 2 months
              > and for some
              > reason I am afraid to tell my family (all they'll say is "you're
              > fine","it's not coming back" "stop thinking about it or you'll
              > make it come back")
              > I know they mean well, but I'm getting somewhat confused and
              > needed to vent.
              >
              > My next MRI isn't due until March of next year. I'm trying to
              > just wait
              > until then and see what happens but I am having trouble deciding
              > if I should
              > go early.
              >
              > I'm so glad you guys are here. Am I crazy or do you guys get this way
              > sometimes?
              >
              > Hesitating while pushing the "send" button,
              > Trisha
              >
              >
              > [Non-text portions of this message have been removed]
              >
              >
              >
              > ------------------------ Yahoo! Groups Sponsor --------------------
              > ~-->
              > $4.98 domain names from Yahoo!. Register anything.
              > http://us.click.yahoo.com/Q7_YsB/neXJAA/yQLSAA/TDoxlB/TM
              > -------------------------------------------------------------------
              > -~->
              >
              > ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE
              > IN THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***
              >
              > Community email addresses:
              > Post message: BrainSurgery@...
              > Subscribe: http://groups.yahoo.com/group/BrainSurgery
              > Unsubscribe: Trisha4080@...
              > List owner: Trisha4080@...
              >
              > Shortcut URL to this page:
              > http://health.groups.yahoo.com/group/BrainSurgery
              > Yahoo! Groups Links
              >
              >
              >
              >
              >
              >
              >
              >



              ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN THE
              PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***

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              [Non-text portions of this message have been removed]
            • Abrarul Khan
              Hi Trisha, I am also in same kind of situation as far as the pain and the pull/pressure on the left side is concerned. My Surgery had been almost 3 month past,
              Message 6 of 16 , Dec 4, 2004
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                Hi Trisha,

                I am also in same kind of situation as far as the pain
                and the pull/pressure on the left side is concerned.
                My Surgery had been almost 3 month past, and I am
                still having that. Some times, very less and some
                times very hard pain, specially in the night, in the
                morning its much better after the sleep.

                Had talked with both of my surgeons and they say that
                its normal and you should not fear about this as
                depending on the person, all gets to normal after
                surgery in around 6 months, so now I am waiting,
                hoping that it will go away in about six months.

                Good Luck to you also.

                Abrar

                --- Trisha Williams <trisha4080@...> wrote:

                > Ok... I've been a little strange (stranger?)
                > lately. Have any of you done
                > this? I know I sound like a fruitcake writing this,
                > but I wouldn't tell
                > anyone but you guys and maybe the doctor.
                >
                > It seems that my surgical area is "under pressure"
                > or pulling and
                > uncomfortable. I sense I can "feel" something
                > inside my head that's not
                > supposed to be there. My headaches are horrible, as
                > before, but more
                > frequent. My dreams all revolve around the tumor
                > coming back, at least all
                > the dreams I remember. I can't remember having a
                > dream without being in the
                > hospital or having a seizure or something around
                > death and tumors. I have a
                > twitch in my left eye that won't go away and the
                > thing that scares me about
                > that is that I had one in my other eye for weeks
                > before they discovered my
                > tumor... naturally, I can't get out of my mind that
                > there must be a new one
                > in the other side now.
                >
                > Part of me thinks I'm imagining all this, part of me
                > thinks it's time to go
                > for an early MRI and part of me thinks I'm tired of
                > thinking about it...
                > know what I mean? This has been going on for about
                > 2 months and for some
                > reason I am afraid to tell my family (all they'll
                > say is "you're fine",
                > "it's not coming back" "stop thinking about it or
                > you'll make it come back")
                > I know they mean well, but I'm getting somewhat
                > confused and needed to vent.
                >
                > My next MRI isn't due until March of next year. I'm
                > trying to just wait
                > until then and see what happens but I am having
                > trouble deciding if I should
                > go early.
                >
                > I'm so glad you guys are here. Am I crazy or do you
                > guys get this way
                > sometimes?
                >
                > Hesitating while pushing the "send" button,
                > Trisha
                >
                >
                > [Non-text portions of this message have been
                > removed]
                >
                >


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              • Sanmich@aol.com
                Hi Trisha, I do get a pressure feeling sometimes in the area of my head where I had surgery (and sometimes in other places on my head too!). I think that if
                Message 7 of 16 , Dec 4, 2004
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                  Hi Trisha,

                  I do get a "pressure" feeling sometimes in the area of my head where I had
                  surgery (and sometimes in other places on my head too!).

                  I think that if it makes you feel better to have an early MRI, than you
                  should. Why worry.

                  Good luck....Sandy


                  [Non-text portions of this message have been removed]
                • Karen Catlin
                  Dear Trish, we all suffer fear, with each new twitch of a muscle, to us its significant, where to someone who never had one of these it goes un-noticed. I say
                  Message 8 of 16 , Dec 4, 2004
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                    Dear Trish, we all suffer fear, with each new twitch of a muscle, to us its
                    significant, where to someone who never had one of these it goes un-noticed.
                    I say get the MRI now. There is no sense in suffering when you can find out
                    one way or another right now.
                    I can not expand much on the dreams because I dont remember mine.
                    My trigeminal nerve is under so much pain I could literally shoot my head
                    off. My MRI is fine. I dont know what I am gonna do.
                    Taking Dilaudid, Tegretol 1200mg day, and Baclofen, which is new. Still in
                    pain. Trying to work. ewwwww
                    Give yourself the gift of MRI for Christmas if you want, peace. The
                    headaches and the twitch should be enough to get one authorized. Much Love
                    to you. Karen



                    On Sat, 4 Dec 2004 08:35:08 -0500, Trisha Williams
                    <trisha4080@...> wrote:
                    >
                    > Ok... I've been a little strange (stranger?) lately. Have any of you done
                    > this? I know I sound like a fruitcake writing this, but I wouldn't tell
                    > anyone but you guys and maybe the doctor.
                    >
                    > It seems that my surgical area is "under pressure" or pulling and
                    > uncomfortable. I sense I can "feel" something inside my head that's not
                    > supposed to be there. My headaches are horrible, as before, but more
                    > frequent. My dreams all revolve around the tumor coming back, at least all
                    > the dreams I remember. I can't remember having a dream without being in the
                    > hospital or having a seizure or something around death and tumors. I have a
                    > twitch in my left eye that won't go away and the thing that scares me about
                    > that is that I had one in my other eye for weeks before they discovered my
                    > tumor... naturally, I can't get out of my mind that there must be a new one
                    > in the other side now.
                    >
                    > Part of me thinks I'm imagining all this, part of me thinks it's time to go
                    > for an early MRI and part of me thinks I'm tired of thinking about it...
                    > know what I mean? This has been going on for about 2 months and for some
                    > reason I am afraid to tell my family (all they'll say is "you're fine",
                    > "it's not coming back" "stop thinking about it or you'll make it come back")
                    > I know they mean well, but I'm getting somewhat confused and needed to vent.
                    >
                    > My next MRI isn't due until March of next year. I'm trying to just wait
                    > until then and see what happens but I am having trouble deciding if I should
                    > go early.
                    >
                    > I'm so glad you guys are here. Am I crazy or do you guys get this way
                    > sometimes?
                    >
                    > Hesitating while pushing the "send" button,
                    > Trisha
                    >
                    > [Non-text portions of this message have been removed]
                    >
                    >
                    > ***IF YOU HAVE NOT ALREADY DONE SO, PLEASE STOP BY AND PARTICIPATE IN THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 1369***
                    >
                    > Community email addresses:
                    > Post message: BrainSurgery@...
                    > Subscribe: http://groups.yahoo.com/group/BrainSurgery
                    > Unsubscribe: Trisha4080@...
                    > List owner: Trisha4080@...
                    >
                    > Shortcut URL to this page:
                    > http://health.groups.yahoo.com/group/BrainSurgery
                    > Yahoo! Groups Links
                    >
                    >
                    >
                    >
                    >
                  • Tabitha Yarolim
                    OK this might be stupid for me to ask, but I am going to anyway. Jacob is having lots of problems focusing his mind on stuff and is very tired. Dr. s have all
                    Message 9 of 16 , May 25, 2006
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                      OK this might be stupid for me to ask, but I am going to anyway.
                      Jacob is having lots of problems focusing his mind on stuff and is
                      very tired. Dr.'s have all said this is normal after surgery. How
                      long does this last and is there anything I can do to help him? His
                      stregth seems to get better everyday and this is good. He gets very
                      upset when he gets talking to fast and the words don't come out
                      right. We talk about everything.....all the papers I am filling out
                      to get some help with meds and such. He wants to know, but can not
                      seem to make up his mind on what we should do, then justs tells me I
                      will do what is best. He also seems to be very short. Does this
                      alot when the kids are here. At this point we do not have the kids
                      24/7, just for the fact that Jacob is alot of care for me right
                      now. Are the mood changes from the surgery or the meds?

                      He still has alot of swelling in his head and they are decreasing
                      his steriod, which is causing some pressure and pain for him. We
                      try to get him to sit up as much as he can to help with the
                      swelling. Is there anything else we can do to help him deal with
                      the pressure? Are they decreasing the steroid to soon? He is on
                      Dezamethasone. Is there maybe some other med we can try? Sorry
                      just getting my questions ready for the Dr. on Friday.

                      Tabitha
                    • Patricia Williams
                      Tabitha, (may help Kel a bit as well) Not a stupid question at all. It s wonderful to see you advocating for your husband and preparing these
                      Message 10 of 16 , May 25, 2006
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                        Tabitha, (may help Kel a bit as well)

                        Not a stupid question at all. It's wonderful to see you advocating for your
                        husband and preparing these excellent questions for the visit.

                        You are perfectly describing my experience of what it felt like during the
                        first month or two after surgery. In my opinion, it is mostly due to the
                        brain's irritability after being manipulated and "hurt" by the surgery and
                        pressure from the tumor. Remember, if a person has say "abdominal" surgery,
                        you can see the scar and the redness and swelling. It is open to air and is
                        able to heal noticeably and more quickly. When a person has brain surgery,
                        this is still the case - there are scars and bruises inside the head and
                        they are causing symptoms. And, just as an abdomen heals, so will this. It
                        may take longer due to it's location inside the head and the fragility of
                        this organ, but it will heal.

                        I do believe the steroids also contribute to the irritability and mood
                        swings as you suspected. The Decadron (dexamethasone) is THE steroid of
                        choice it seems. I believe your question about weaning off the steroids is
                        an excellent one for the doctor.

                        Looking back, I think the best thing someone could have done in the
                        situation you describe was to reassure me that this is temporary and will
                        improve. I suggest you explain to him that you understand his confusion and
                        frustrations and that others have experienced the same and do get past it.
                        Try to minimize stimulation around him. You may find he has more trouble
                        focusing and speaking when there is other stimuli present (i.e., TV, radio,
                        activity in the room, moving in a car, etc.) If you help quiet the
                        environment, especially as the day progresses, you may find it easier for
                        him.

                        I would also keep some type of log. A couple of reasons -
                        1) it's a good reminder of things to mention to the doctor(s)
                        2) you will be able to see trends in behavior and patterns of what is
                        helping or disturbing him
                        3) you will have something to look back on later and see the progress he is
                        making/has made.

                        About the speech difficulties: has he been prescribed speech therapy? If
                        not, this could be very helpful. Occupational therapy is also a wonderful
                        way to start to refocus and retrain your mind. These are questions I would
                        pose to the doctor when you see him/her. Have you read some of our posts to
                        him so he can see that what he is feeling is not uncommon and it does get
                        better? One nice thing is that the recollection of this confusion and
                        frustrating time does become a bit of a blur when you look back on it later.


                        I found an excellent article in "The Brain Injury Guide" which may help you
                        as well. Although this is written for head injury, you may have heard me
                        say before that the end result is very similar after brain surgery as there
                        is (usually) injury, to varying degrees, after the presence of a tumor
                        and/or surgery:
                        _______________________

                        WHAT TO DO AFTER LEAVING THE HOSPITAL (edited)

                        Now lets talk about what to do when the patient gets home. Often this is a
                        very big event for family members. It's a great occasion. But unfortunately,
                        it's just the beginning of the recovery process. The medical injuries
                        (basically the bruises and broken bones) heal very quickly. But healing from
                        a head injury can take years. When someone goes home, many family members
                        think, it will just be just a couple more months. In truth, it's usually a
                        lot longer.

                        In the months following discharge from the hospital, it's important to be
                        aware that the patient may have a fatigue problem. In other words, they get
                        very tired quickly. When they get home from the hospital, they may have only
                        3 or 4 good hours in the day before they're wiped out. They may easily fall
                        asleep, or they may not be able to concentrate. In general, the person is
                        better in the mornings and has tougher times in the afternoons. It's
                        important for family members to remember this. Often the evening comes
                        around and family members want to bring relatives over to see them. Those
                        evenings are often tough on the patient. In the early weeks, one of the
                        things that I would suggest is to try to limit "welcome home parties" and
                        visitors. Have them scaled down and shorter in length. For example, try a
                        welcome home party that lasts for about a hour, then have everyone leave.
                        The head-injured person may want to see friends right away. You may need to
                        limit it to just one hour or two hours, depending on how much the person can
                        tolerate. At the same time, you don't want to limit it too much, because the
                        person may become depressed and feel isolated from friends. It is always a
                        very careful balancing act in terms of how much the person needs versus what
                        can be dealt with.

                        I think another thing that families find difficult is treating the person
                        normally. Often, family members unknowingly will talk down to the patients,
                        or treat them with pity. The patient wants to be treated like everyone else.
                        It's also important to note that many friends of the patient will be very
                        uncomfortable talking about the diagnosis. For most people, this is very
                        frightening. Many people harbor thoughts of "this could have been me," and
                        talking about it scares them. Visitors often feel that they have to get into
                        this very deep discussion about the illness, but are afraid the patient will
                        be too upset by it. For visitor or guests, a very brief acknowledgment of
                        the person's surgery is best. If the patient wants to talk about it, fine,
                        but they usually want to get on with life and have normal conversations
                        about how things are going. They also like to talk about the things they
                        love to do, their work, their friends, what's happened since they've been
                        away. It's important to try to normalize conversations.

                        Family members have difficulty dealing with someone who looks the same but
                        is different. Head-injured people may talk the same and walk the same, but
                        will be emotionally or behaviorally different. For example, they may be more
                        irritable, or more cranky, and perhaps more impulsive. For family members,
                        it's very hard to deal with this. It's almost if someone has come in and
                        stolen their personality. This leads to a loss of a lot of friends. In
                        general, I have what's called The 90% Rule. Over a one to two year period,
                        the head-injured person may lose 90% of their friends. In the early phases
                        of the hospital stay, their friends are there a great deal. They send a lot
                        of cards and there's a lot of sympathy. But as time goes on, those friends
                        seem to fade away. Although this is not true of everybody, it is a very
                        common problem. Family members get very angry at those people who tend to
                        fade away. It's important to understand that those who are not around may
                        often have difficulty dealing with serious illness. Most people want to live
                        a happy, carefree life. They don't want to think of things like head injury
                        or cancer or someone dying terribly. People don't want to handle that level
                        of reality. Family members can get very upset and may wish to confront
                        friends about why they aren't around. What a family should do is encourage
                        new relationships. New people who meet head-injured patients will like them
                        the way they are. They don't know how they used to act before. /end
                        _____________________

                        Hope this helps!

                        Trisha




                        -----Original Message-----
                        From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
                        Behalf Of Tabitha Yarolim
                        Sent: Thursday, May 25, 2006 5:26 AM
                        To: BrainSurgery@yahoogroups.com
                        Subject: [BrainSurgery@Yahoo] question

                        OK this might be stupid for me to ask, but I am going to anyway.
                        Jacob is having lots of problems focusing his mind on stuff and is
                        very tired. Dr.'s have all said this is normal after surgery. How
                        long does this last and is there anything I can do to help him? His
                        stregth seems to get better everyday and this is good. He gets very
                        upset when he gets talking to fast and the words don't come out
                        right. We talk about everything.....all the papers I am filling out
                        to get some help with meds and such. He wants to know, but can not
                        seem to make up his mind on what we should do, then justs tells me I
                        will do what is best. He also seems to be very short. Does this
                        alot when the kids are here. At this point we do not have the kids
                        24/7, just for the fact that Jacob is alot of care for me right
                        now. Are the mood changes from the surgery or the meds?

                        He still has alot of swelling in his head and they are decreasing
                        his steriod, which is causing some pressure and pain for him. We
                        try to get him to sit up as much as he can to help with the
                        swelling. Is there anything else we can do to help him deal with
                        the pressure? Are they decreasing the steroid to soon? He is on
                        Dezamethasone. Is there maybe some other med we can try? Sorry
                        just getting my questions ready for the Dr. on Friday.

                        Tabitha






                        The BrainSurgery@Yahoo website is not a substitute for medical advice: THIS
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                      • Tom
                        Tabitha, If Jacob is on 1mg Dezamethasone X times per day as I was, I can completely relate. I just went off of it as of May 6th and I was on as much as 8mg
                        Message 11 of 16 , May 25, 2006
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                          Tabitha,

                          If Jacob is on 1mg Dezamethasone X times per day as I was, I can
                          completely relate. I just went off of it as of May 6th and I was on
                          as much as 8mg per day when I got out of the Hospital on April 2nd. I
                          must say, that stuff is and was nasty. It may help with the pain and
                          swelling both internally and externally, but the side effects are
                          horrible! I too was moody, short tempered, talked fast and lost words
                          in translation. Each week I decreased my dosage (per the doctor's
                          orders) by 2mg until I was at 2mg per day (1 in the morning and 1 at
                          night) where at that point I was told I could go off them or go to 1/2
                          a pill in the morning and 1/2 at night (I opted for the latter as it
                          was a hard come down). The increased swelling and irretability is
                          normal when going off of steroids, it's just all part of it. I
                          remember having an insane appetite as well and couldn't keep my
                          stomach full. I also wanted to tear my pregnant wife's head off from
                          time to time as she just couldn't understand the pains I was going
                          through and couldn't help me with them either. Here's my suggestions:

                          1) Give him space when he asks for it, it's just a way of avoiding
                          something uncalled for.

                          2) Make a list of all the things that you see different in him and
                          have him make a list of all the things he feels are different with
                          himself. You should then share that list with the doctor to put aside
                          any worries that things are totally abnormal so you both can quit
                          worrying.

                          3) Ask for some NORCO or Perkiset for pain and pressure. I personally
                          had NORCO to help me and it really worked for me. Stronger than
                          Vicodin (without the codine additive), but not so bad that it leave
                          you loopy.

                          4) Be very patient and as my wife says: "Tell him not to scratch at
                          the scar or staples!"

                          You're not going to know whether the effects he's under are completely
                          due to the surgery or the meds until he's off of the meds
                          unfortunately. As far as how long some of these effects will last...
                          well, it all depends on the person unfortunately. I didn't lose my
                          appetite and start "slowing down" until a week after I went off the
                          Dezamethasone. My hands no longer shake and I can now hold a gentle
                          conversation without slerring or missing words, but I don't think I'd
                          be this way if it wasn't for going off the steroids.


                          Good luck!


                          --Tom Kolbe
                          Waking Craniotomy 3/27/06
                          Total resection 3cm Ganglioglioma
                          UCSF Medical Center - Dr. Mitchell S. Berger

                          --- In BrainSurgery@yahoogroups.com, "Tabitha Yarolim"
                          <tabjay2001@...> wrote:
                          >
                          > OK this might be stupid for me to ask, but I am going to anyway.
                          > Jacob is having lots of problems focusing his mind on stuff and is
                          > very tired. Dr.'s have all said this is normal after surgery. How
                          > long does this last and is there anything I can do to help him? His
                          > stregth seems to get better everyday and this is good. He gets very
                          > upset when he gets talking to fast and the words don't come out
                          > right. We talk about everything.....all the papers I am filling out
                          > to get some help with meds and such. He wants to know, but can not
                          > seem to make up his mind on what we should do, then justs tells me I
                          > will do what is best. He also seems to be very short. Does this
                          > alot when the kids are here. At this point we do not have the kids
                          > 24/7, just for the fact that Jacob is alot of care for me right
                          > now. Are the mood changes from the surgery or the meds?
                          >
                          > He still has alot of swelling in his head and they are decreasing
                          > his steriod, which is causing some pressure and pain for him. We
                          > try to get him to sit up as much as he can to help with the
                          > swelling. Is there anything else we can do to help him deal with
                          > the pressure? Are they decreasing the steroid to soon? He is on
                          > Dezamethasone. Is there maybe some other med we can try? Sorry
                          > just getting my questions ready for the Dr. on Friday.
                          >
                          > Tabitha
                          >
                        • Jacob Yarolim
                          Tom, Wow, he must really need the Dezamethasone. He is on 4mg 4 times a day. We go to 2mg 4 times a day tomorrow. Then down again in a week to 2 mg 2 times
                          Message 12 of 16 , May 25, 2006
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                            Tom,

                            Wow, he must really need the Dezamethasone. He is on 4mg 4 times a day. We go to 2mg 4 times a day tomorrow. Then down again in a week to 2 mg 2 times a day.

                            I wanted to thank you for sharing your story with us. (I read these to the hubby, has problems with his eyes.)


                            Thanks
                            Tabitha

                            Tom <kolbe11@...> wrote:
                            Tabitha,

                            If Jacob is on 1mg Dezamethasone X times per day as I was, I can
                            completely relate. I just went off of it as of May 6th and I was on
                            as much as 8mg per day when I got out of the Hospital on April 2nd. I
                            must say, that stuff is and was nasty. It may help with the pain and
                            swelling both internally and externally, but the side effects are
                            horrible! I too was moody, short tempered, talked fast and lost words
                            in translation. Each week I decreased my dosage (per the doctor's
                            orders) by 2mg until I was at 2mg per day (1 in the morning and 1 at
                            night) where at that point I was told I could go off them or go to 1/2
                            a pill in the morning and 1/2 at night (I opted for the latter as it
                            was a hard come down). The increased swelling and irretability is
                            normal when going off of steroids, it's just all part of it. I
                            remember having an insane appetite as well and couldn't keep my
                            stomach full. I also wanted to tear my pregnant wife's head off from
                            time to time as she just couldn't understand the pains I was going
                            through and couldn't help me with them either. Here's my suggestions:

                            1) Give him space when he asks for it, it's just a way of avoiding
                            something uncalled for.

                            2) Make a list of all the things that you see different in him and
                            have him make a list of all the things he feels are different with
                            himself. You should then share that list with the doctor to put aside
                            any worries that things are totally abnormal so you both can quit
                            worrying.

                            3) Ask for some NORCO or Perkiset for pain and pressure. I personally
                            had NORCO to help me and it really worked for me. Stronger than
                            Vicodin (without the codine additive), but not so bad that it leave
                            you loopy.

                            4) Be very patient and as my wife says: "Tell him not to scratch at
                            the scar or staples!"

                            You're not going to know whether the effects he's under are completely
                            due to the surgery or the meds until he's off of the meds
                            unfortunately. As far as how long some of these effects will last...
                            well, it all depends on the person unfortunately. I didn't lose my
                            appetite and start "slowing down" until a week after I went off the
                            Dezamethasone. My hands no longer shake and I can now hold a gentle
                            conversation without slerring or missing words, but I don't think I'd
                            be this way if it wasn't for going off the steroids.


                            Good luck!


                            --Tom Kolbe
                            Waking Craniotomy 3/27/06
                            Total resection 3cm Ganglioglioma
                            UCSF Medical Center - Dr. Mitchell S. Berger

                            --- In BrainSurgery@yahoogroups.com, "Tabitha Yarolim"
                            <tabjay2001@...> wrote:
                            >
                            > OK this might be stupid for me to ask, but I am going to anyway.
                            > Jacob is having lots of problems focusing his mind on stuff and is
                            > very tired. Dr.'s have all said this is normal after surgery. How
                            > long does this last and is there anything I can do to help him? His
                            > stregth seems to get better everyday and this is good. He gets very
                            > upset when he gets talking to fast and the words don't come out
                            > right. We talk about everything.....all the papers I am filling out
                            > to get some help with meds and such. He wants to know, but can not
                            > seem to make up his mind on what we should do, then justs tells me I
                            > will do what is best. He also seems to be very short. Does this
                            > alot when the kids are here. At this point we do not have the kids
                            > 24/7, just for the fact that Jacob is alot of care for me right
                            > now. Are the mood changes from the surgery or the meds?
                            >
                            > He still has alot of swelling in his head and they are decreasing
                            > his steriod, which is causing some pressure and pain for him. We
                            > try to get him to sit up as much as he can to help with the
                            > swelling. Is there anything else we can do to help him deal with
                            > the pressure? Are they decreasing the steroid to soon? He is on
                            > Dezamethasone. Is there maybe some other med we can try? Sorry
                            > just getting my questions ready for the Dr. on Friday.
                            >
                            > Tabitha
                            >







                            The BrainSurgery@Yahoo website is not a substitute for medical advice: THIS WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL ADVICE. All content, including text, graphics, images, and information, available on or through this Web site ("content") are for general informational and support purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis or treatment. NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT, BECAUSE OF SOMETHING YOU HAVE READ ON THIS WEB SITE. NEVER RELY ON INFORMATION ON THIS WEB SITE IN PLACE OF SEEKING PROFESSIONAL MEDICAL ADVICE.

                            Community email addresses:
                            Post message: BrainSurgery@...
                            Subscribe: http://groups.yahoo.com/group/BrainSurgery
                            List moderator: Trisha4080@...




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                          • Tabitha Yarolim
                            Trisha, You are like a wealth of info. You are truely special to us here and have helped so much. I do read the posts to my hubby. We have just started
                            Message 13 of 16 , May 25, 2006
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                              Trisha,

                              You are like a wealth of info. You are truely special to us here
                              and have helped so much. I do read the posts to my hubby. We have
                              just started going on the past posts, so I know we will find only
                              more good info. I just wanted you to know how much you (and the
                              group) has helped us.

                              I do notice with the speech that it is when we have people over to
                              visit and they have been here awhile. He does good if it is just
                              him and me, but you put other people in and to much going on at
                              once. He is recieving Occ. Therapy and Pysical therapy. Will look
                              into speech. He also has some weakness in the left side of his
                              speech that seems to effect his speech when trying to talk to fast.
                              Remind you this is my point of view. His balance is getting better
                              everyday. Is walking further and seems to be more steady.

                              I also do tell Jacob repeatedly how wonderful he is doing. And tell
                              him it will get better everyday, which it does. I try my hardest to
                              let him do things on his own. It is very hard sometimes, but I do
                              it. It makes him feel more like himself if I am not standing over
                              his shoulder every second. More manly.

                              Thank you once again.
                              Tabitha

                              --- In BrainSurgery@yahoogroups.com, "Patricia Williams"
                              <trisha4080@...> wrote:
                              >
                              > Tabitha, (may help Kel a bit as well)
                              >
                              > Not a stupid question at all. It's wonderful to see you
                              advocating for your
                              > husband and preparing these excellent questions for the visit.
                              >
                              > You are perfectly describing my experience of what it felt like
                              during the
                              > first month or two after surgery. In my opinion, it is mostly due
                              to the
                              > brain's irritability after being manipulated and "hurt" by the
                              surgery and
                              > pressure from the tumor. Remember, if a person has
                              say "abdominal" surgery,
                              > you can see the scar and the redness and swelling. It is open to
                              air and is
                              > able to heal noticeably and more quickly. When a person has brain
                              surgery,
                              > this is still the case - there are scars and bruises inside the
                              head and
                              > they are causing symptoms. And, just as an abdomen heals, so will
                              this. It
                              > may take longer due to it's location inside the head and the
                              fragility of
                              > this organ, but it will heal.
                              >
                              > I do believe the steroids also contribute to the irritability and
                              mood
                              > swings as you suspected. The Decadron (dexamethasone) is THE
                              steroid of
                              > choice it seems. I believe your question about weaning off the
                              steroids is
                              > an excellent one for the doctor.
                              >
                              > Looking back, I think the best thing someone could have done in the
                              > situation you describe was to reassure me that this is temporary
                              and will
                              > improve. I suggest you explain to him that you understand his
                              confusion and
                              > frustrations and that others have experienced the same and do get
                              past it.
                              > Try to minimize stimulation around him. You may find he has more
                              trouble
                              > focusing and speaking when there is other stimuli present (i.e.,
                              TV, radio,
                              > activity in the room, moving in a car, etc.) If you help quiet the
                              > environment, especially as the day progresses, you may find it
                              easier for
                              > him.
                              >
                              > I would also keep some type of log. A couple of reasons -
                              > 1) it's a good reminder of things to mention to the doctor(s)
                              > 2) you will be able to see trends in behavior and patterns of what
                              is
                              > helping or disturbing him
                              > 3) you will have something to look back on later and see the
                              progress he is
                              > making/has made.
                              >
                              > About the speech difficulties: has he been prescribed speech
                              therapy? If
                              > not, this could be very helpful. Occupational therapy is also a
                              wonderful
                              > way to start to refocus and retrain your mind. These are
                              questions I would
                              > pose to the doctor when you see him/her. Have you read some of
                              our posts to
                              > him so he can see that what he is feeling is not uncommon and it
                              does get
                              > better? One nice thing is that the recollection of this confusion
                              and
                              > frustrating time does become a bit of a blur when you look back on
                              it later.
                              >
                              >
                              > I found an excellent article in "The Brain Injury Guide" which may
                              help you
                              > as well. Although this is written for head injury, you may have
                              heard me
                              > say before that the end result is very similar after brain surgery
                              as there
                              > is (usually) injury, to varying degrees, after the presence of a
                              tumor
                              > and/or surgery:
                              > _______________________
                              >
                              > WHAT TO DO AFTER LEAVING THE HOSPITAL (edited)
                              >
                              > Now lets talk about what to do when the patient gets home. Often
                              this is a
                              > very big event for family members. It's a great occasion. But
                              unfortunately,
                              > it's just the beginning of the recovery process. The medical
                              injuries
                              > (basically the bruises and broken bones) heal very quickly. But
                              healing from
                              > a head injury can take years. When someone goes home, many family
                              members
                              > think, it will just be just a couple more months. In truth, it's
                              usually a
                              > lot longer.
                              >
                              > In the months following discharge from the hospital, it's
                              important to be
                              > aware that the patient may have a fatigue problem. In other words,
                              they get
                              > very tired quickly. When they get home from the hospital, they may
                              have only
                              > 3 or 4 good hours in the day before they're wiped out. They may
                              easily fall
                              > asleep, or they may not be able to concentrate. In general, the
                              person is
                              > better in the mornings and has tougher times in the afternoons.
                              It's
                              > important for family members to remember this. Often the evening
                              comes
                              > around and family members want to bring relatives over to see
                              them. Those
                              > evenings are often tough on the patient. In the early weeks, one
                              of the
                              > things that I would suggest is to try to limit "welcome home
                              parties" and
                              > visitors. Have them scaled down and shorter in length. For
                              example, try a
                              > welcome home party that lasts for about a hour, then have everyone
                              leave.
                              > The head-injured person may want to see friends right away. You
                              may need to
                              > limit it to just one hour or two hours, depending on how much the
                              person can
                              > tolerate. At the same time, you don't want to limit it too much,
                              because the
                              > person may become depressed and feel isolated from friends. It is
                              always a
                              > very careful balancing act in terms of how much the person needs
                              versus what
                              > can be dealt with.
                              >
                              > I think another thing that families find difficult is treating the
                              person
                              > normally. Often, family members unknowingly will talk down to the
                              patients,
                              > or treat them with pity. The patient wants to be treated like
                              everyone else.
                              > It's also important to note that many friends of the patient will
                              be very
                              > uncomfortable talking about the diagnosis. For most people, this
                              is very
                              > frightening. Many people harbor thoughts of "this could have been
                              me," and
                              > talking about it scares them. Visitors often feel that they have
                              to get into
                              > this very deep discussion about the illness, but are afraid the
                              patient will
                              > be too upset by it. For visitor or guests, a very brief
                              acknowledgment of
                              > the person's surgery is best. If the patient wants to talk about
                              it, fine,
                              > but they usually want to get on with life and have normal
                              conversations
                              > about how things are going. They also like to talk about the
                              things they
                              > love to do, their work, their friends, what's happened since
                              they've been
                              > away. It's important to try to normalize conversations.
                              >
                              > Family members have difficulty dealing with someone who looks the
                              same but
                              > is different. Head-injured people may talk the same and walk the
                              same, but
                              > will be emotionally or behaviorally different. For example, they
                              may be more
                              > irritable, or more cranky, and perhaps more impulsive. For family
                              members,
                              > it's very hard to deal with this. It's almost if someone has come
                              in and
                              > stolen their personality. This leads to a loss of a lot of
                              friends. In
                              > general, I have what's called The 90% Rule. Over a one to two year
                              period,
                              > the head-injured person may lose 90% of their friends. In the
                              early phases
                              > of the hospital stay, their friends are there a great deal. They
                              send a lot
                              > of cards and there's a lot of sympathy. But as time goes on, those
                              friends
                              > seem to fade away. Although this is not true of everybody, it is a
                              very
                              > common problem. Family members get very angry at those people who
                              tend to
                              > fade away. It's important to understand that those who are not
                              around may
                              > often have difficulty dealing with serious illness. Most people
                              want to live
                              > a happy, carefree life. They don't want to think of things like
                              head injury
                              > or cancer or someone dying terribly. People don't want to handle
                              that level
                              > of reality. Family members can get very upset and may wish to
                              confront
                              > friends about why they aren't around. What a family should do is
                              encourage
                              > new relationships. New people who meet head-injured patients will
                              like them
                              > the way they are. They don't know how they used to act before. /end
                              > _____________________
                              >
                              > Hope this helps!
                              >
                              > Trisha
                              >
                              >
                              >
                              >
                              > -----Original Message-----
                              > From: BrainSurgery@yahoogroups.com
                              [mailto:BrainSurgery@yahoogroups.com] On
                              > Behalf Of Tabitha Yarolim
                              > Sent: Thursday, May 25, 2006 5:26 AM
                              > To: BrainSurgery@yahoogroups.com
                              > Subject: [BrainSurgery@Yahoo] question
                              >
                              > OK this might be stupid for me to ask, but I am going to anyway.
                              > Jacob is having lots of problems focusing his mind on stuff and is
                              > very tired. Dr.'s have all said this is normal after surgery.
                              How
                              > long does this last and is there anything I can do to help him?
                              His
                              > stregth seems to get better everyday and this is good. He gets
                              very
                              > upset when he gets talking to fast and the words don't come out
                              > right. We talk about everything.....all the papers I am filling
                              out
                              > to get some help with meds and such. He wants to know, but can
                              not
                              > seem to make up his mind on what we should do, then justs tells me
                              I
                              > will do what is best. He also seems to be very short. Does this
                              > alot when the kids are here. At this point we do not have the
                              kids
                              > 24/7, just for the fact that Jacob is alot of care for me right
                              > now. Are the mood changes from the surgery or the meds?
                              >
                              > He still has alot of swelling in his head and they are decreasing
                              > his steriod, which is causing some pressure and pain for him. We
                              > try to get him to sit up as much as he can to help with the
                              > swelling. Is there anything else we can do to help him deal with
                              > the pressure? Are they decreasing the steroid to soon? He is on
                              > Dezamethasone. Is there maybe some other med we can try? Sorry
                              > just getting my questions ready for the Dr. on Friday.
                              >
                              > Tabitha
                              >
                              >
                              >
                              >
                              >
                              >
                              > The BrainSurgery@Yahoo website is not a substitute for medical
                              advice: THIS
                              > WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL ADVICE.
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                              > content, including text, graphics, images, and information,
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                              > purposes only. The content is not intended to be a substitute for
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                              DISREGARD
                              > PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT, BECAUSE OF
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                            • Vickie Taylor
                              Watch the steriods !!!!!! It can tear up your gut. They perforated my colon 21 days after my brain surgery. ...
                              Message 14 of 16 , May 25, 2006
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                                Watch the steriods !!!!!! It can tear up your gut.
                                They perforated my colon 21 days after my brain
                                surgery.



                                --- Tom <kolbe11@...> wrote:

                                > Tabitha,
                                >
                                > If Jacob is on 1mg Dezamethasone X times per day as
                                > I was, I can
                                > completely relate. I just went off of it as of May
                                > 6th and I was on
                                > as much as 8mg per day when I got out of the
                                > Hospital on April 2nd. I
                                > must say, that stuff is and was nasty. It may help
                                > with the pain and
                                > swelling both internally and externally, but the
                                > side effects are
                                > horrible! I too was moody, short tempered, talked
                                > fast and lost words
                                > in translation. Each week I decreased my dosage
                                > (per the doctor's
                                > orders) by 2mg until I was at 2mg per day (1 in the
                                > morning and 1 at
                                > night) where at that point I was told I could go off
                                > them or go to 1/2
                                > a pill in the morning and 1/2 at night (I opted for
                                > the latter as it
                                > was a hard come down). The increased swelling and
                                > irretability is
                                > normal when going off of steroids, it's just all
                                > part of it. I
                                > remember having an insane appetite as well and
                                > couldn't keep my
                                > stomach full. I also wanted to tear my pregnant
                                > wife's head off from
                                > time to time as she just couldn't understand the
                                > pains I was going
                                > through and couldn't help me with them either.
                                > Here's my suggestions:
                                >
                                > 1) Give him space when he asks for it, it's just a
                                > way of avoiding
                                > something uncalled for.
                                >
                                > 2) Make a list of all the things that you see
                                > different in him and
                                > have him make a list of all the things he feels are
                                > different with
                                > himself. You should then share that list with the
                                > doctor to put aside
                                > any worries that things are totally abnormal so you
                                > both can quit
                                > worrying.
                                >
                                > 3) Ask for some NORCO or Perkiset for pain and
                                > pressure. I personally
                                > had NORCO to help me and it really worked for me.
                                > Stronger than
                                > Vicodin (without the codine additive), but not so
                                > bad that it leave
                                > you loopy.
                                >
                                > 4) Be very patient and as my wife says: "Tell him
                                > not to scratch at
                                > the scar or staples!"
                                >
                                > You're not going to know whether the effects he's
                                > under are completely
                                > due to the surgery or the meds until he's off of the
                                > meds
                                > unfortunately. As far as how long some of these
                                > effects will last...
                                > well, it all depends on the person unfortunately. I
                                > didn't lose my
                                > appetite and start "slowing down" until a week after
                                > I went off the
                                > Dezamethasone. My hands no longer shake and I can
                                > now hold a gentle
                                > conversation without slerring or missing words, but
                                > I don't think I'd
                                > be this way if it wasn't for going off the steroids.
                                >
                                >
                                >
                                > Good luck!
                                >
                                >
                                > --Tom Kolbe
                                > Waking Craniotomy 3/27/06
                                > Total resection 3cm Ganglioglioma
                                > UCSF Medical Center - Dr. Mitchell S. Berger
                                >
                                > --- In BrainSurgery@yahoogroups.com, "Tabitha
                                > Yarolim"
                                > <tabjay2001@...> wrote:
                                > >
                                > > OK this might be stupid for me to ask, but I am
                                > going to anyway.
                                > > Jacob is having lots of problems focusing his mind
                                > on stuff and is
                                > > very tired. Dr.'s have all said this is normal
                                > after surgery. How
                                > > long does this last and is there anything I can do
                                > to help him? His
                                > > stregth seems to get better everyday and this is
                                > good. He gets very
                                > > upset when he gets talking to fast and the words
                                > don't come out
                                > > right. We talk about everything.....all the
                                > papers I am filling out
                                > > to get some help with meds and such. He wants to
                                > know, but can not
                                > > seem to make up his mind on what we should do,
                                > then justs tells me I
                                > > will do what is best. He also seems to be very
                                > short. Does this
                                > > alot when the kids are here. At this point we do
                                > not have the kids
                                > > 24/7, just for the fact that Jacob is alot of care
                                > for me right
                                > > now. Are the mood changes from the surgery or the
                                > meds?
                                > >
                                > > He still has alot of swelling in his head and they
                                > are decreasing
                                > > his steriod, which is causing some pressure and
                                > pain for him. We
                                > > try to get him to sit up as much as he can to help
                                > with the
                                > > swelling. Is there anything else we can do to
                                > help him deal with
                                > > the pressure? Are they decreasing the steroid to
                                > soon? He is on
                                > > Dezamethasone. Is there maybe some other med we
                                > can try? Sorry
                                > > just getting my questions ready for the Dr. on
                                > Friday.
                                > >
                                > > Tabitha
                                > >
                                >
                                >
                                >
                                >
                                >
                                >


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                              • Jenn Cox
                                My experience with taking steroids after surgery is different from everyone else. Mainly because I was pregnant and I have a whole in my head for the excess
                                Message 15 of 16 , May 25, 2006
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                                  My experience with taking steroids after surgery is different from everyone
                                  else. Mainly because I was pregnant and I have a whole in my head for the
                                  excess fluid to go through because I had hydrocephalus and I was in the
                                  hospital 3 weeks after surgery, but I do know that they do cause the
                                  symptoms that you explained. Just be very supportive and like Tom said write
                                  down the changes you see and let him do the one on how he feels. I am sorry
                                  that I am not much help.

                                  Jenn

                                  -------Original Message-------

                                  From: Tom
                                  Date: 05/25/06 19:54:14
                                  To: BrainSurgery@yahoogroups.com
                                  Subject: [BrainSurgery@Yahoo] Re: question

                                  Tabitha,

                                  If Jacob is on 1mg Dezamethasone X times per day as I was, I can
                                  completely relate. I just went off of it as of May 6th and I was on
                                  as much as 8mg per day when I got out of the Hospital on April 2nd. I
                                  must say, that stuff is and was nasty. It may help with the pain and
                                  swelling both internally and externally, but the side effects are
                                  horrible! I too was moody, short tempered, talked fast and lost words
                                  in translation. Each week I decreased my dosage (per the doctor's
                                  orders) by 2mg until I was at 2mg per day (1 in the morning and 1 at
                                  night) where at that point I was told I could go off them or go to 1/2
                                  a pill in the morning and 1/2 at night (I opted for the latter as it
                                  was a hard come down). The increased swelling and irretability is
                                  normal when going off of steroids, it's just all part of it. I
                                  remember having an insane appetite as well and couldn't keep my
                                  stomach full. I also wanted to tear my pregnant wife's head off from
                                  time to time as she just couldn't understand the pains I was going
                                  through and couldn't help me with them either. Here's my suggestions:

                                  1) Give him space when he asks for it, it's just a way of avoiding
                                  something uncalled for.

                                  2) Make a list of all the things that you see different in him and
                                  have him make a list of all the things he feels are different with
                                  himself. You should then share that list with the doctor to put aside
                                  any worries that things are totally abnormal so you both can quit
                                  worrying.

                                  3) Ask for some NORCO or Perkiset for pain and pressure. I personally
                                  had NORCO to help me and it really worked for me. Stronger than
                                  Vicodin (without the codine additive), but not so bad that it leave
                                  you loopy.

                                  4) Be very patient and as my wife says: "Tell him not to scratch at
                                  the scar or staples!"

                                  You're not going to know whether the effects he's under are completely
                                  due to the surgery or the meds until he's off of the meds
                                  unfortunately. As far as how long some of these effects will last...
                                  well, it all depends on the person unfortunately. I didn't lose my
                                  appetite and start "slowing down" until a week after I went off the
                                  Dezamethasone. My hands no longer shake and I can now hold a gentle
                                  conversation without slerring or missing words, but I don't think I'd
                                  be this way if it wasn't for going off the steroids.


                                  Good luck!


                                  --Tom Kolbe
                                  Waking Craniotomy 3/27/06
                                  Total resection 3cm Ganglioglioma
                                  UCSF Medical Center - Dr. Mitchell S. Berger

                                  --- In BrainSurgery@yahoogroups.com, "Tabitha Yarolim"
                                  <tabjay2001@...> wrote:
                                  >
                                  > OK this might be stupid for me to ask, but I am going to anyway.
                                  > Jacob is having lots of problems focusing his mind on stuff and is
                                  > very tired. Dr.'s have all said this is normal after surgery. How
                                  > long does this last and is there anything I can do to help him? His
                                  > stregth seems to get better everyday and this is good. He gets very
                                  > upset when he gets talking to fast and the words don't come out
                                  > right. We talk about everything.....all the papers I am filling out
                                  > to get some help with meds and such. He wants to know, but can not
                                  > seem to make up his mind on what we should do, then justs tells me I
                                  > will do what is best. He also seems to be very short. Does this
                                  > alot when the kids are here. At this point we do not have the kids
                                  > 24/7, just for the fact that Jacob is alot of care for me right
                                  > now. Are the mood changes from the surgery or the meds?
                                  >
                                  > He still has alot of swelling in his head and they are decreasing
                                  > his steriod, which is causing some pressure and pain for him. We
                                  > try to get him to sit up as much as he can to help with the
                                  > swelling. Is there anything else we can do to help him deal with
                                  > the pressure? Are they decreasing the steroid to soon? He is on
                                  > Dezamethasone. Is there maybe some other med we can try? Sorry
                                  > just getting my questions ready for the Dr. on Friday.
                                  >
                                  > Tabitha
                                  >







                                  The BrainSurgery@Yahoo website is not a substitute for medical advice: THIS
                                  WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL ADVICE. All
                                  content, including text, graphics, images, and information, available on or
                                  through this Web site ("content") are for general informational and support
                                  purposes only. The content is not intended to be a substitute for
                                  professional medical advice, diagnosis or treatment. NEVER DISREGARD
                                  PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT, BECAUSE OF SOMETHING
                                  YOU HAVE READ ON THIS WEB SITE. NEVER RELY ON INFORMATION ON THIS WEB SITE
                                  IN PLACE OF SEEKING PROFESSIONAL MEDICAL ADVICE.

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                                • Patricia Williams
                                  Thank you, Tabitha. I am glad to hear that at least you can identify a specific type of environment where he is having more difficulty and that it is not a
                                  Message 16 of 16 , May 26, 2006
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                                    Thank you, Tabitha. I am glad to hear that at least you can identify a
                                    specific type of environment where he is having more difficulty and that it
                                    is not a constant type thing.

                                    I am so glad you added the end about not standing over his shoulder, that is
                                    such an excellent point. Particularly for men, feelings of dependence can
                                    be very difficult and perhaps viewed by the patient as somewhat
                                    demasculinating.

                                    All my best to both you and Jacob,

                                    Trisha





                                    -----Original Message-----
                                    From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
                                    Behalf Of Tabitha Yarolim
                                    Sent: Thursday, May 25, 2006 10:19 PM
                                    To: BrainSurgery@yahoogroups.com
                                    Subject: Re: [BrainSurgery@Yahoo] question Trisha

                                    Trisha,

                                    You are like a wealth of info. You are truely special to us here
                                    and have helped so much. I do read the posts to my hubby. We have
                                    just started going on the past posts, so I know we will find only
                                    more good info. I just wanted you to know how much you (and the
                                    group) has helped us.

                                    I do notice with the speech that it is when we have people over to
                                    visit and they have been here awhile. He does good if it is just
                                    him and me, but you put other people in and to much going on at
                                    once. He is recieving Occ. Therapy and Pysical therapy. Will look
                                    into speech. He also has some weakness in the left side of his
                                    speech that seems to effect his speech when trying to talk to fast.
                                    Remind you this is my point of view. His balance is getting better
                                    everyday. Is walking further and seems to be more steady.

                                    I also do tell Jacob repeatedly how wonderful he is doing. And tell
                                    him it will get better everyday, which it does. I try my hardest to
                                    let him do things on his own. It is very hard sometimes, but I do
                                    it. It makes him feel more like himself if I am not standing over
                                    his shoulder every second. More manly.

                                    Thank you once again.
                                    Tabitha

                                    --- In BrainSurgery@yahoogroups.com, "Patricia Williams"
                                    <trisha4080@...> wrote:
                                    >
                                    > Tabitha, (may help Kel a bit as well)
                                    >
                                    > Not a stupid question at all. It's wonderful to see you
                                    advocating for your
                                    > husband and preparing these excellent questions for the visit.
                                    >
                                    > You are perfectly describing my experience of what it felt like
                                    during the
                                    > first month or two after surgery. In my opinion, it is mostly due
                                    to the
                                    > brain's irritability after being manipulated and "hurt" by the
                                    surgery and
                                    > pressure from the tumor. Remember, if a person has
                                    say "abdominal" surgery,
                                    > you can see the scar and the redness and swelling. It is open to
                                    air and is
                                    > able to heal noticeably and more quickly. When a person has brain
                                    surgery,
                                    > this is still the case - there are scars and bruises inside the
                                    head and
                                    > they are causing symptoms. And, just as an abdomen heals, so will
                                    this. It
                                    > may take longer due to it's location inside the head and the
                                    fragility of
                                    > this organ, but it will heal.
                                    >
                                    > I do believe the steroids also contribute to the irritability and
                                    mood
                                    > swings as you suspected. The Decadron (dexamethasone) is THE
                                    steroid of
                                    > choice it seems. I believe your question about weaning off the
                                    steroids is
                                    > an excellent one for the doctor.
                                    >
                                    > Looking back, I think the best thing someone could have done in the
                                    > situation you describe was to reassure me that this is temporary
                                    and will
                                    > improve. I suggest you explain to him that you understand his
                                    confusion and
                                    > frustrations and that others have experienced the same and do get
                                    past it.
                                    > Try to minimize stimulation around him. You may find he has more
                                    trouble
                                    > focusing and speaking when there is other stimuli present (i.e.,
                                    TV, radio,
                                    > activity in the room, moving in a car, etc.) If you help quiet the
                                    > environment, especially as the day progresses, you may find it
                                    easier for
                                    > him.
                                    >
                                    > I would also keep some type of log. A couple of reasons -
                                    > 1) it's a good reminder of things to mention to the doctor(s)
                                    > 2) you will be able to see trends in behavior and patterns of what
                                    is
                                    > helping or disturbing him
                                    > 3) you will have something to look back on later and see the
                                    progress he is
                                    > making/has made.
                                    >
                                    > About the speech difficulties: has he been prescribed speech
                                    therapy? If
                                    > not, this could be very helpful. Occupational therapy is also a
                                    wonderful
                                    > way to start to refocus and retrain your mind. These are
                                    questions I would
                                    > pose to the doctor when you see him/her. Have you read some of
                                    our posts to
                                    > him so he can see that what he is feeling is not uncommon and it
                                    does get
                                    > better? One nice thing is that the recollection of this confusion
                                    and
                                    > frustrating time does become a bit of a blur when you look back on
                                    it later.
                                    >
                                    >
                                    > I found an excellent article in "The Brain Injury Guide" which may
                                    help you
                                    > as well. Although this is written for head injury, you may have
                                    heard me
                                    > say before that the end result is very similar after brain surgery
                                    as there
                                    > is (usually) injury, to varying degrees, after the presence of a
                                    tumor
                                    > and/or surgery:
                                    > _______________________
                                    >
                                    > WHAT TO DO AFTER LEAVING THE HOSPITAL (edited)
                                    >
                                    > Now lets talk about what to do when the patient gets home. Often
                                    this is a
                                    > very big event for family members. It's a great occasion. But
                                    unfortunately,
                                    > it's just the beginning of the recovery process. The medical
                                    injuries
                                    > (basically the bruises and broken bones) heal very quickly. But
                                    healing from
                                    > a head injury can take years. When someone goes home, many family
                                    members
                                    > think, it will just be just a couple more months. In truth, it's
                                    usually a
                                    > lot longer.
                                    >
                                    > In the months following discharge from the hospital, it's
                                    important to be
                                    > aware that the patient may have a fatigue problem. In other words,
                                    they get
                                    > very tired quickly. When they get home from the hospital, they may
                                    have only
                                    > 3 or 4 good hours in the day before they're wiped out. They may
                                    easily fall
                                    > asleep, or they may not be able to concentrate. In general, the
                                    person is
                                    > better in the mornings and has tougher times in the afternoons.
                                    It's
                                    > important for family members to remember this. Often the evening
                                    comes
                                    > around and family members want to bring relatives over to see
                                    them. Those
                                    > evenings are often tough on the patient. In the early weeks, one
                                    of the
                                    > things that I would suggest is to try to limit "welcome home
                                    parties" and
                                    > visitors. Have them scaled down and shorter in length. For
                                    example, try a
                                    > welcome home party that lasts for about a hour, then have everyone
                                    leave.
                                    > The head-injured person may want to see friends right away. You
                                    may need to
                                    > limit it to just one hour or two hours, depending on how much the
                                    person can
                                    > tolerate. At the same time, you don't want to limit it too much,
                                    because the
                                    > person may become depressed and feel isolated from friends. It is
                                    always a
                                    > very careful balancing act in terms of how much the person needs
                                    versus what
                                    > can be dealt with.
                                    >
                                    > I think another thing that families find difficult is treating the
                                    person
                                    > normally. Often, family members unknowingly will talk down to the
                                    patients,
                                    > or treat them with pity. The patient wants to be treated like
                                    everyone else.
                                    > It's also important to note that many friends of the patient will
                                    be very
                                    > uncomfortable talking about the diagnosis. For most people, this
                                    is very
                                    > frightening. Many people harbor thoughts of "this could have been
                                    me," and
                                    > talking about it scares them. Visitors often feel that they have
                                    to get into
                                    > this very deep discussion about the illness, but are afraid the
                                    patient will
                                    > be too upset by it. For visitor or guests, a very brief
                                    acknowledgment of
                                    > the person's surgery is best. If the patient wants to talk about
                                    it, fine,
                                    > but they usually want to get on with life and have normal
                                    conversations
                                    > about how things are going. They also like to talk about the
                                    things they
                                    > love to do, their work, their friends, what's happened since
                                    they've been
                                    > away. It's important to try to normalize conversations.
                                    >
                                    > Family members have difficulty dealing with someone who looks the
                                    same but
                                    > is different. Head-injured people may talk the same and walk the
                                    same, but
                                    > will be emotionally or behaviorally different. For example, they
                                    may be more
                                    > irritable, or more cranky, and perhaps more impulsive. For family
                                    members,
                                    > it's very hard to deal with this. It's almost if someone has come
                                    in and
                                    > stolen their personality. This leads to a loss of a lot of
                                    friends. In
                                    > general, I have what's called The 90% Rule. Over a one to two year
                                    period,
                                    > the head-injured person may lose 90% of their friends. In the
                                    early phases
                                    > of the hospital stay, their friends are there a great deal. They
                                    send a lot
                                    > of cards and there's a lot of sympathy. But as time goes on, those
                                    friends
                                    > seem to fade away. Although this is not true of everybody, it is a
                                    very
                                    > common problem. Family members get very angry at those people who
                                    tend to
                                    > fade away. It's important to understand that those who are not
                                    around may
                                    > often have difficulty dealing with serious illness. Most people
                                    want to live
                                    > a happy, carefree life. They don't want to think of things like
                                    head injury
                                    > or cancer or someone dying terribly. People don't want to handle
                                    that level
                                    > of reality. Family members can get very upset and may wish to
                                    confront
                                    > friends about why they aren't around. What a family should do is
                                    encourage
                                    > new relationships. New people who meet head-injured patients will
                                    like them
                                    > the way they are. They don't know how they used to act before. /end
                                    > _____________________
                                    >
                                    > Hope this helps!
                                    >
                                    > Trisha
                                    >
                                    >
                                    >
                                    >
                                    > -----Original Message-----
                                    > From: BrainSurgery@yahoogroups.com
                                    [mailto:BrainSurgery@yahoogroups.com] On
                                    > Behalf Of Tabitha Yarolim
                                    > Sent: Thursday, May 25, 2006 5:26 AM
                                    > To: BrainSurgery@yahoogroups.com
                                    > Subject: [BrainSurgery@Yahoo] question
                                    >
                                    > OK this might be stupid for me to ask, but I am going to anyway.
                                    > Jacob is having lots of problems focusing his mind on stuff and is
                                    > very tired. Dr.'s have all said this is normal after surgery.
                                    How
                                    > long does this last and is there anything I can do to help him?
                                    His
                                    > stregth seems to get better everyday and this is good. He gets
                                    very
                                    > upset when he gets talking to fast and the words don't come out
                                    > right. We talk about everything.....all the papers I am filling
                                    out
                                    > to get some help with meds and such. He wants to know, but can
                                    not
                                    > seem to make up his mind on what we should do, then justs tells me
                                    I
                                    > will do what is best. He also seems to be very short. Does this
                                    > alot when the kids are here. At this point we do not have the
                                    kids
                                    > 24/7, just for the fact that Jacob is alot of care for me right
                                    > now. Are the mood changes from the surgery or the meds?
                                    >
                                    > He still has alot of swelling in his head and they are decreasing
                                    > his steriod, which is causing some pressure and pain for him. We
                                    > try to get him to sit up as much as he can to help with the
                                    > swelling. Is there anything else we can do to help him deal with
                                    > the pressure? Are they decreasing the steroid to soon? He is on
                                    > Dezamethasone. Is there maybe some other med we can try? Sorry
                                    > just getting my questions ready for the Dr. on Friday.
                                    >
                                    > Tabitha
                                    >
                                    >
                                    >
                                    >
                                    >
                                    >
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                                    The BrainSurgery@Yahoo website is not a substitute for medical advice: THIS
                                    WEBSITE IS NOT DESIGNED TO, AND DOES NOT, PROVIDE MEDICAL ADVICE. All
                                    content, including text, graphics, images, and information, available on or
                                    through this Web site ("content") are for general informational and support
                                    purposes only. The content is not intended to be a substitute for
                                    professional medical advice, diagnosis or treatment. NEVER DISREGARD
                                    PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT, BECAUSE OF SOMETHING
                                    YOU HAVE READ ON THIS WEB SITE. NEVER RELY ON INFORMATION ON THIS WEB SITE
                                    IN PLACE OF SEEKING PROFESSIONAL MEDICAL ADVICE.

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