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Old 10-24-2011, 09:25 PM   #11
Jesse_Bulldog
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Join Date: Oct 2011
Location: Detroit, MI
Posts: 8
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Originally Posted by cr0604 View Post
Hi there. I posted the other day about my 8-month old receiving a shunt. This was his 5th surgery, the first 4 were embolizations for an AV malformation. This is all new to me and I just need someone to talk to or to be able to ask questions. It is very encouraging to read the posts from some of y'all who have had shunts for most of your life. ...I just feel like I really can't find information, everytime I read up on shunts...it's just the technical aspects of it. I know about shunt failures and shunt revisions, etc. ...but I guess I'm just curious, is there anything my son won't be able to do due to his shunt? What should we be careful of? Will he be able to lead a normal life? I want to be able to have these answers for him and for me. I'm sorry if i'm rambling....I guess I'm just looking for some guidance.
I was born with an arachnoid cyst on my brain, they didn't find it until I was nine. I'm 29 now and I've had 99 shunt revisions since they first placed it. Despite how that my sound, I've been blessed being able to live a full life. I've worked full time since I was 13, played sports, I didn't even have trouble skydiving despite the Dr. telling me otherwise. Limitations vary from person to person, but I've known kids who have had just a few shunts placed, and they've lasted them their whole life. And they were able to live without the daily pain and discomfort.

They have made dramatic improvements on shunts in the last decade, which has given such better chances at a full life to kids/people. If your son has a medos valve/ programmable valve you have to be careful of magnets, because that's how the pressure changed on certain shunts without surgery.

FYI: There is a support group which is called S.T.A.R.S. that raises money for shunt research. It was started years ago in Detroit, they have event's and what not but more importantly other mothers & fathers who know exactly what your going thru.
I hope everything works out for you & I wish you and your son the best.
-Jesse
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Old 10-25-2011, 09:58 PM   #12
lcms0516
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Join Date: Jan 2008
Location: Maryland suburbs of DC
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Originally Posted by Jesse_Bulldog View Post
I've had 99 revisions, so I know about how things work and just wanted to give you alot of credit for what you said. That's a better answer then most Dr.'s give
99 revisions!!!

Why can't they get it right. I know 'practice makes perfect', but 99 revisions. That is insane.
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Old 05-03-2018, 09:15 PM   #13
bluebird26
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Join Date: Apr 2018
Posts: 3
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Quote:
Originally Posted by cr0604 View Post
Hi there. I posted the other day about my 8-month old receiving a shunt. This was his 5th surgery, the first 4 were embolizations for an AV malformation. This is all new to me and I just need someone to talk to or to be able to ask questions. It is very encouraging to read the posts from some of y'all who have had shunts for most of your life. ...I just feel like I really can't find information, everytime I read up on shunts...it's just the technical aspects of it. I know about shunt failures and shunt revisions, etc. ...but I guess I'm just curious, is there anything my son won't be able to do due to his shunt? What should we be careful of? Will he be able to lead a normal life? I want to be able to have these answers for him and for me. I'm sorry if i'm rambling....I guess I'm just looking for some guidance.
I know this is a very late reply as your son is approximately eight years old but your post touched me so here goes. I was diagnosed when i was 2 months younger than your son was at the time of your post. I had three shunts in my life with 2 being disconnected and revised all before the age of 7 years old and now I'm a 22 year old young woman so that has been 16 - 17 years without a revision. Everyone is different and you probably know now from him and his professional care team what he can do within both his abilities and possibilities. I can't offer you specific advice but my parents were "advised"/told I would be either dead, in a vegetative state or live with significant physical and intellectual impairments at the time of my diagnosis according to what they relayed to me about that time in our lives years later when I was old and wise enough to understand. Thanks to God I have defied 90% of the doctors' grim expectations of me everyday I'm alive. I can walk, talk, play non contact sports, have had paid part time jobs in the past, have an above average intelligence, have a very high emotional intelligence, completed my high school diploma and pursuing a career in medicine. I do have some limitations in my life such as no diving, no contact sports and being constantly aware of the warning signs of my body but I have a normal social life for a 22 year old young woman. I basically look at it as a blessing in disguise because it made me a self advocate at a much much younger age than my peers, more emotionally mature than my peers at a younger age, more compassionate and empathic for other people who have a disability such as myself and fortunate for living in Canada where high quality healthcare is available and can an activity I want to do be modified or accommodations be added for it to be accessible to me if not find something else. All I can advise you is continue to be a supportive parent, encourage your son's abilities and possibilities, teach him to self advocate and be humble and compassionate at a young age for others with challenges whether disability related or not and continue to reach out for support whether through his care team, family/friends, in person support groups or organizations and/or through this forum because I can certainly understand what hydrocphalus can do to someone. I hope that was helpful.
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