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Hemangioblastoma

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  • lynnlynn@swbell.net
    I am the mother of a 41 year old male who had surgery 3 months ago for a hemangioblastoma in the cerebellum and brain stem area. This is 3rd surgery, first at
    Message 1 of 3 , Feb 27, 2010
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      I am the mother of a 41 year old male who had surgery 3 months ago for a hemangioblastoma in the cerebellum and brain stem area. This is 3rd surgery, first at 15, second at 25 plus gamma knife 3 months later, third at 41. The first 2 recoveries were short term and minimal residuals. My son has now been in hospitals for 3 months. He has hemiparesis of right side, and needs a feeding tube and trach. He can speak but not swallow. He does not appear to have any cognitive impairment. He is able to sit in a wheel chair for 45 minutes to an hour at a time. He is getting Speech and Swallow therapy, PT and OT. Looking for anyone with similar situation. Would like to hear of recovery progression. Thank You. He lives in Portland, OR.
      Lynn in Rockport, TX.
    • Trisha W
      Dear Lynn, First I would like to say how sorry I am that you are having to face such enormous hardship.  I am happy for your son that he has a good advocate
      Message 2 of 3 , Feb 27, 2010
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        Dear Lynn,

        First I would like to say how sorry I am that you are having to face such enormous hardship.  I am happy for your son that he has a good advocate to help him through the maize of recovery/habilitation.

        As a matter of fact, there is a member in our group who has similar circumstances.  She is in her 20's and her mother is also an amazing advocate.  I am going to forward your email to her in case she has not seen your post.  I am sure they would be thrilled to give you some insights into how they have managed similar issues.

        Please take the time to also look through the links section of the website where you may find more useful information as well as organizations offering support.

        All my best to you and your family,

        Patricia Williams, R.N.
        Founder/Moderator BrainSurgery @ Yahoo Group
        Diagnosed 5/1/99, Resected 5/3/99
        4.8 cm convexity meningioma left frontal/parietal/temporal lobes
        Director of Braingels Project Fundraiser

        CHECK OUT OUR FUNDRAISING WEBSITE AT:
        www.braingels.org
        ALL PROFITS donated to 501(c)(3) organizations dedicated to the support and
        education of brain tumor patients and their families


        --- On Sat, 2/27/10, lynnlynn@... <lynnlynn@...> wrote:

        From: lynnlynn@... <lynnlynn@...>
        Subject: [BrainSurgery@Yahoo] Hemangioblastoma
        To: BrainSurgery@yahoogroups.com
        Date: Saturday, February 27, 2010, 9:26 AM







         









        I am the mother of a 41 year old male who had surgery 3 months ago for a hemangioblastoma in the cerebellum and brain stem area. This is 3rd surgery, first at 15, second at 25 plus gamma knife 3 months later, third at 41. The first 2 recoveries were short term and minimal residuals. My son has now been in hospitals for 3 months. He has hemiparesis of right side, and needs a feeding tube and trach. He can speak but not swallow. He does not appear to have any cognitive impairment. He is able to sit in a wheel chair for 45 minutes to an hour at a time. He is getting Speech and Swallow therapy, PT and OT. Looking for anyone with similar situation. Would like to hear of recovery progression. Thank You. He lives in Portland, OR.

        Lynn in Rockport, TX.






















        [Non-text portions of this message have been removed]
      • Lynn Lynn
        Thank you Trisha!  Lynn ________________________________ From: Trisha W To: BrainSurgery@yahoogroups.com Sent: Sat, February 27,
        Message 3 of 3 , Feb 27, 2010
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          Thank you Trisha!  Lynn




          ________________________________
          From: Trisha W <trisha4080@...>
          To: BrainSurgery@yahoogroups.com
          Sent: Sat, February 27, 2010 12:24:42 PM
          Subject: Re: [BrainSurgery@Yahoo] Hemangioblastoma

           
          Dear Lynn,

          First I would like to say how sorry I am that you are having to face such enormous hardship.  I am happy for your son that he has a good advocate to help him through the maize of recovery/habilitati on.

          As a matter of fact, there is a member in our group who has similar circumstances.  She is in her 20's and her mother is also an amazing advocate.  I am going to forward your email to her in case she has not seen your post.  I am sure they would be thrilled to give you some insights into how they have managed similar issues.

          Please take the time to also look through the links section of the website where you may find more useful information as well as organizations offering support.

          All my best to you and your family,

          Patricia Williams, R.N.
          Founder/Moderator BrainSurgery @ Yahoo Group
          Diagnosed 5/1/99, Resected 5/3/99
          4.8 cm convexity meningioma left frontal/parietal/ temporal lobes
          Director of Braingels Project Fundraiser

          CHECK OUT OUR FUNDRAISING WEBSITE AT:
          www.braingels. org
          ALL PROFITS donated to 501(c)(3) organizations dedicated to the support and
          education of brain tumor patients and their families

          --- On Sat, 2/27/10, lynnlynn@swbell. net <lynnlynn@swbell. net> wrote:

          From: lynnlynn@swbell. net <lynnlynn@swbell. net>
          Subject: [BrainSurgery@ Yahoo] Hemangioblastoma
          To: BrainSurgery@ yahoogroups. com
          Date: Saturday, February 27, 2010, 9:26 AM

           

          I am the mother of a 41 year old male who had surgery 3 months ago for a hemangioblastoma in the cerebellum and brain stem area. This is 3rd surgery, first at 15, second at 25 plus gamma knife 3 months later, third at 41. The first 2 recoveries were short term and minimal residuals. My son has now been in hospitals for 3 months. He has hemiparesis of right side, and needs a feeding tube and trach. He can speak but not swallow. He does not appear to have any cognitive impairment. He is able to sit in a wheel chair for 45 minutes to an hour at a time. He is getting Speech and Swallow therapy, PT and OT. Looking for anyone with similar situation. Would like to hear of recovery progression. Thank You. He lives in Portland, OR.

          Lynn in Rockport, TX.

          [Non-text portions of this message have been removed]




          [Non-text portions of this message have been removed]
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