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new member, Dx'ed today

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  • dmvcpa_drogers
    Good evening. My name is Danette and my son, Austin was diagnosed today. We had an MRI/MRA two weeks ago for the Moya Moya dx, and it did not rule it out. So
    Message 1 of 7 , Mar 3, 2004
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      Good evening.
      My name is Danette and my son, Austin was diagnosed today. We had an
      MRI/MRA two weeks ago for the Moya Moya dx, and it did not rule it
      out. So yesterday, Austin had an anteriogram. It shows right and
      left side narrowed arteries, and Moya Moya vessels developed on the
      right.
      Austin has not been symptomatic at all, just headaches, and his
      MRI/MRA shows no strokes damage. They way Moya Moya was even brought
      into the picture is amazing, and I know it was a God send the reason
      we knew even to suspect it. Austin's ped opthomologist (he is
      visually impaired) is at a research university hospital. They had
      found out that patients who have optic nerve hypoplasia, and have
      morning glory disks are at risk for Moya Moya Disease. I mentioned
      it to our neurosurgeon, but he did not think Austin met the
      criteria. But, he scheduled a MRI/MRA to rule it out...and then had
      the anteriogram, and now we have the dx.

      To make a long story short, I want some help in "what to expect"
      with this, and what kind of prognosis is expected. Any input will be
      greatly appreciated. We expect to do surgery in the next few months.

      Danette , mom to Austin (5, basal encephalocele, septo-optic
      dysplasia, visually impaired, hypopituitarism...and now Moya Moya)
    • Rena
      Danette, How lucky to have a dx so early. I don t know how old Austin is, but as I have learned all children have about the same response to surgery. They look
      Message 2 of 7 , Mar 3, 2004
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        Danette,
        How lucky to have a dx so early. I don't know how old Austin is, but as I have learned all children have about the same response to surgery. They look scary as heck right afterwards and the next day they are ready to go same as always. My son had surgery in June, he was 11 yrs old at the time. He got out of the hospital a day early after the first surgery, and we were sightseeing and getting ice cream 2 days after his surgery. He still had the bandage and was unable to wear one hearing aid or his glasses, but it didn't stop him. After the second surgery he had some mild complications but bounced back quick.

        Due to the swelling he was unable to wear his glasses a few weeks, but I guess some people are able to get the ear pieces bent so they can still wear their glasses, Tyler swelled alot so that wasn't a choice. Of course his ear canals swelled so his hearing aids didn't fit either, so we talked to him loud and just adjusted till he healed.

        Tyler is now 12. He had a stroke before dx so he is working on getting the use of his left arm back, otherwise he is back to him self. Just so you know he is dx with, mild CP, hearing loss, vision impaired, and now Moya moya. He is a wonderful child and a blessing all the time.
        Rena

        dmvcpa_drogers <dsrogers93@...> wrote:
        Good evening.
        My name is Danette and my son, Austin was diagnosed today. We had an
        MRI/MRA two weeks ago for the Moya Moya dx, and it did not rule it
        out. So yesterday, Austin had an anteriogram. It shows right and
        left side narrowed arteries, and Moya Moya vessels developed on the
        right.
        Austin has not been symptomatic at all, just headaches, and his
        MRI/MRA shows no strokes damage. They way Moya Moya was even brought
        into the picture is amazing, and I know it was a God send the reason
        we knew even to suspect it. Austin's ped opthomologist (he is
        visually impaired) is at a research university hospital. They had
        found out that patients who have optic nerve hypoplasia, and have
        morning glory disks are at risk for Moya Moya Disease. I mentioned
        it to our neurosurgeon, but he did not think Austin met the
        criteria. But, he scheduled a MRI/MRA to rule it out...and then had
        the anteriogram, and now we have the dx.

        To make a long story short, I want some help in "what to expect"
        with this, and what kind of prognosis is expected. Any input will be
        greatly appreciated. We expect to do surgery in the next few months.

        Danette , mom to Austin (5, basal encephalocele, septo-optic
        dysplasia, visually impaired, hypopituitarism...and now Moya Moya)





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      • dmvcpa_drogers
        Rena, Thank you for your reply. Austin in 5, and will be 6 in May. I am very glad we found out about Moya Moya this soon too. All of his doctors are amazed,
        Message 3 of 7 , Mar 4, 2004
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          Rena,
          Thank you for your reply. Austin in 5, and will be 6 in May. I am
          very glad we found out about Moya Moya this soon too. All of his
          doctors are amazed, because as you know, this is rarely detected
          before they have a stroke.
          Austin has had neurosurgery before, but I had not thought about the
          swelling factor for this. I will have to think how we can fix his
          glasses so he can wear them. His blind in his right eye,NLP, but has
          some vision in his left. He had cataracts removed from that eye, so
          he does not have a lense, and wears bi-focals....so he really needs
          his glasses. I would hate for him not to be able to see. How long
          was your son's swelling , that he could not wear his glasses? Did
          they not fit because of the width of them?

          Thank you for your help.
          Danette


          --- In parentingchildrenwithmoyamoya@yahoogroups.com, Rena
          <oneofakindco@y...> wrote:
          > Danette,
          > How lucky to have a dx so early. I don't know how old Austin is,
          but as I have learned all children have about the same response to
          surgery. They look scary as heck right afterwards and the next day
          they are ready to go same as always. My son had surgery in June, he
          was 11 yrs old at the time. He got out of the hospital a day early
          after the first surgery, and we were sightseeing and getting ice
          cream 2 days after his surgery. He still had the bandage and was
          unable to wear one hearing aid or his glasses, but it didn't stop
          him. After the second surgery he had some mild complications but
          bounced back quick.
          >
          > Due to the swelling he was unable to wear his glasses a few weeks,
          but I guess some people are able to get the ear pieces bent so they
          can still wear their glasses, Tyler swelled alot so that wasn't a
          choice. Of course his ear canals swelled so his hearing aids didn't
          fit either, so we talked to him loud and just adjusted till he
          healed.
          >
          > Tyler is now 12. He had a stroke before dx so he is working on
          getting the use of his left arm back, otherwise he is back to him
          self. Just so you know he is dx with, mild CP, hearing loss, vision
          impaired, and now Moya moya. He is a wonderful child and a blessing
          all the time.
          > Rena
        • Rena
          Danette, Tyler couldn t wear his glasses for about 2 weeks after his second surgery. We tried bending the frames but Tyler had alot of swelling, his temples
          Message 4 of 7 , Mar 4, 2004
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            Danette,
            Tyler couldn't wear his glasses for about 2 weeks after his second surgery. We tried bending the frames but Tyler had alot of swelling, his temples swelled out beyound his ears. Maybe an elastic strap would help Austin, but I think the doctors don't want anything to touch the incision. Good luck with finding a solution. Also realize that not everyone swells like Tyler did, I have seen pictures of people with minimal swelling.
            You and Austin are in my prayers, Rena

            dmvcpa_drogers <dsrogers93@...> wrote:
            Rena,
            Thank you for your reply. Austin in 5, and will be 6 in May. I am
            very glad we found out about Moya Moya this soon too. All of his
            doctors are amazed, because as you know, this is rarely detected
            before they have a stroke.
            Austin has had neurosurgery before, but I had not thought about the
            swelling factor for this. I will have to think how we can fix his
            glasses so he can wear them. His blind in his right eye,NLP, but has
            some vision in his left. He had cataracts removed from that eye, so
            he does not have a lense, and wears bi-focals....so he really needs
            his glasses. I would hate for him not to be able to see. How long
            was your son's swelling , that he could not wear his glasses? Did
            they not fit because of the width of them?

            Thank you for your help.
            Danette


            --- In parentingchildrenwithmoyamoya@yahoogroups.com, Rena
            <oneofakindco@y...> wrote:
            > Danette,
            > How lucky to have a dx so early. I don't know how old Austin is,
            but as I have learned all children have about the same response to
            surgery. They look scary as heck right afterwards and the next day
            they are ready to go same as always. My son had surgery in June, he
            was 11 yrs old at the time. He got out of the hospital a day early
            after the first surgery, and we were sightseeing and getting ice
            cream 2 days after his surgery. He still had the bandage and was
            unable to wear one hearing aid or his glasses, but it didn't stop
            him. After the second surgery he had some mild complications but
            bounced back quick.
            >
            > Due to the swelling he was unable to wear his glasses a few weeks,
            but I guess some people are able to get the ear pieces bent so they
            can still wear their glasses, Tyler swelled alot so that wasn't a
            choice. Of course his ear canals swelled so his hearing aids didn't
            fit either, so we talked to him loud and just adjusted till he
            healed.
            >
            > Tyler is now 12. He had a stroke before dx so he is working on
            getting the use of his left arm back, otherwise he is back to him
            self. Just so you know he is dx with, mild CP, hearing loss, vision
            impaired, and now Moya moya. He is a wonderful child and a blessing
            all the time.
            > Rena




            ---------------------------------
            Yahoo! Groups Links

            To visit your group on the web, go to:
            http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/

            To unsubscribe from this group, send an email to:
            parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com

            Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



            ---------------------------------
            Do you Yahoo!?
            Yahoo! Search - Find what you�re looking for faster.

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          • RGrace5@aol.com
            Message 5 of 7 , Mar 8, 2004
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            • RGrace5@aol.com
              Danette, AS you know you are very lucky to have gotten a diagnosis before any strokes or TIA s. My daughter was diagnosed 2 yrs. ago and had 2 surgeries, but
              Message 6 of 7 , Mar 8, 2004
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                Danette, AS you know you are very lucky to have gotten a diagnosis before any
                strokes or TIA's. My daughter was diagnosed 2 yrs. ago and had 2 surgeries,
                but only after having had several strokes.If you have any specific questions
                ask away.kathleen is doing amazing now and has had no new strokes since the
                surgery.I will keepp your family in our prayers.
                Mary Grace


                [Non-text portions of this message have been removed]
              • dmvcpa_drogers
                Mary Grace, Thank you for your reply. I have tons of questions, so I will try to write some down to ask you. We go see our neurologist next Monday, the 15th
                Message 7 of 7 , Mar 8, 2004
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                  Mary Grace,
                  Thank you for your reply. I have tons of questions, so I will try
                  to write some down to ask you. We go see our neurologist next
                  Monday, the 15th and then we go to our ped neurosurgeon on April 6th
                  to schedule surgery. What kinds of questions should I ask the Dr? I
                  am starting a list so I can take it with me.

                  Where did your daughter have her surgery? How old was she when
                  diagnosed? Was her two surgeries from doing each side separate? Does
                  she have any other Dx along with Moya Moya? Is she on any meds now?
                  I have read patients are sometimes but on baby aspirin for life, as
                  preventative measure.

                  Still more questions to come.... :0)

                  Danette
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