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5029Re: [BrainSurgery@Yahoo] Re: My son had brain surgery on March 23

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  • Anne McGinnis Breen
    Apr 19, 2011
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      Dear Ronna,
      Thanks so much for sharing your story and the details of his good longterm recovery from brain surgery..
      Rereading this thread can really help some other people more than you will ever know
      helping them to realize that the immediate post op side effects of the first few weeks
      are not permanent if the patient gets appropriate care and brain rehabilitation therapy like you did for him
      Many people do not know they have to start the recovery with baby steps and baby words sometimes
      I am sure your loving care and constant encouragement with a sense of humor helped him make such a good recovery.
      I hope you have a safe trip home, and I hope he does well for a long, long time despite his current prognosis,
      The doctors did a good job, and they do not know everything....
      I pray he has many miles yet to go and many precious dreams yet to live.

      GBYAY Anne McGinnis Breen
      See my ponytail bouncing and my smiley face winking at you? &;>)

      Please scroll all the way down to my first two blog entries for my list of 28 questions to ask your medical team about brain tumor treatments originally composed in 1997 plus my personal meningioma alternative drug therapy RU486 Mifepristone and my new blog comments about the obsolete 1990s EPA radiation risk calculations for women and children are found at http://gbyay.blogspot.com
      ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
      Keep you faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!



      -----Original Message-----
      From: Ronna Harlow <rharlow2@...>
      To: BrainSurgery@yahoogroups.com
      Sent: Tue, Apr 19, 2011 9:11 am
      Subject: Re: [BrainSurgery@Yahoo] Re: My son had brain surgery on March 23


      Well, I've had practice for nearly 3 years of being a long-distance mom. So
      ong as I know he is pretty much back to normal, I don't think it will be
      oo hard. He and I are simply not used to being together and I know he is
      eady to send me home! He did quite well yesterday with his first dose of
      hemo. He's a very independent young man and he knows he can contact me at
      nytime for anything.
      Thank you!
      On Tue, Apr 19, 2011 at 9:00 AM, Aleksa <hattie886@...> wrote:
      >

      Will it be hard for you to be a long-distance mom again after being so
      involved in your son's day-to-day life, and especially after the hard news
      you've received.

      Blessings to you and your family.

      grace & peace
      Aleksa

      --- On Mon, 4/18/11, sally.1234sally <rharlow2@...> wrote:

      From: sally.1234sally <rharlow2@...>
      Subject: [BrainSurgery@Yahoo] Re: My son had brain surgery on March 23
      To: BrainSurgery@yahoogroups.com
      Received: Monday, April 18, 2011, 4:05 PM




      My son was discharged home from the rehab facility on April 8. Since then
      he has made an awesome recovery and is fully functional and quite
      independent now! He no longer has the expressive aphasia and his right-sided
      weakness is nearly gone. However, on April 13, 3 weeks following surgery, at
      a followup with his neurosurgeon, we were told it was a grade 3 oligo, a
      malignant neoplasm. That was the first time we heard the actual diagnosis. A
      nurse at the rehab place told us the diagnosis was "benign neoplasm" so this
      bit of news hit us rather hard! Well, he started Temodar today, along with
      Bactrim and Zofran. He will be on this for twelve months. Today is Monday,
      April 18 and he told me yesterday I should go home this weekend. I am
      waiting to hear from his insurance regarding the coverage for Temodar. He
      may qualify for some assistance as he is only a student with no income but
      we are waiting to hear back on that.

      He choose to take his Temodar in the morning with his other meds rather
      than at bedtime, as bedtime for a college student is kind of up in the air
      and he always gets up at 8:30 to take his other meds anyway.

      Anyway, his progress since being home has just been amazing, he is ready to
      fly on his own now and I'll get to go back to being a long-distance mom once
      again.

      --- In BrainSurgery@yahoogroups.com, "sally.1234sally" <rharlow2@...>
      wrote:
      >
      > The surgery went great. The doc says he got most of my son's
      oligodendroglioma out and I am so thankful for that. What we were NEVER
      alerted to were some of the side effects of a left frontal craniotomy,
      namely expressive aphasia and right-sided weakness, so when these symptoms
      didn't get better in the few days after surgery, that hit us like a ton of
      bricks. My parents and I drove 1800 miles to CA to be with my 20-year-old
      son (a junior studying electrical engineering). The day after surgery, even
      though I had never been told of the side effects, I accepted them as
      "temporary" but as the days went by and he was not getting much better, it
      was decided by the doc to admit him to an acute rehab facility and then it
      was a waiting game in the hospital - waiting for a bed in the rehab facility
      to become available. He could have been discharged home Saturday following
      surgery but insurance would not cover rehab if he went home. A bed did not
      become available
      until Wednesday March 30. In the meantime, I started working with my son
      with numbers, letters, spelling, colors, shapes, etc. I know this is a
      horribly frustrating experience for him because he KNOWS the answers but the
      wrong words come out of his mouth. My hair is brown but he replied "yellow"
      then "red" when asked, then laughed because he heard himself give the
      "wrong" answer. But he can spit out the numbers for pi to like 10 digits!
      lol. funny thing, the brain. Thank God my son has a sense of humor. I just
      told him that this situation absolutely SUCKS but here we are and we need to
      move forward and work hard together. He gets it. On Tuesday March 29 he
      could not open his hand, extend his fingers or make a fist. He was up and
      walking, though, and his balance seems to be just fine - just a small
      deficit on the right side and awareness of it. But the next day, Wednesday,
      March 30, he could open and shut his hand and just yesterday he is now able
      to
      pinch weakly - I bought him a white board and have him practicing his
      writing. I had only planned to stay in CA for 2 weeks and flew home
      yesterday - but I have to go back to be his caregiver until he is able to
      function independently. My job, thankfully, is portable, and his apartment
      manager is graciously allowing me to move into his place and even providing
      me some furniture - the only thing I lacked was transportation - so I bought
      a car back home - I will pick it up tomorrow and drive 1800 miles back to
      take care of my son.
      >
      > Has anyone in this group this experience? How long did it take you (or
      your loved one) to "recover" from these side effects? Any words of wisdom?
      >
      > Thanks so much for this group to allow me to 'vent' ..
      >
      > Ronna :o)
      >

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