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Old 05-03-2018, 09:15 PM #1
bluebird26 bluebird26 is offline
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Join Date: Apr 2018
Posts: 3
5 yr Member
bluebird26 bluebird26 is offline
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Join Date: Apr 2018
Posts: 3
5 yr Member
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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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