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Old 11-15-2018, 04:32 PM #11
doreengarrett doreengarrett is offline
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Join Date: Nov 2018
Location: Bebington, Wirral UK
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1 yr Member
doreengarrett doreengarrett is offline
Newly Joined
Join Date: Nov 2018
Location: Bebington, Wirral UK
Posts: 1
1 yr Member
Default Hi newbie here

Originally Posted by billsf100 View Post
Still a newbie here, looking for straight, honest answers even if they hurt about my 23 yr old son. He was born at 26 weeks with Hydrocephalus, CP, and brain injury. Lately, unexplainable low body temps ALL the time. 94-96 are the readings for the last 2 weeks. Dr's sometimes seem to sidestep our questions, maybe to not worry us. As the years pass, with all the shunt failures, CT scans, and shunt series X-rays, we are told of "Loss of Gray Matter" progression and "Stiffness" inside his brain. He seems to be slowly losing ground. Over the last 2 weeks his Psyc has been trying to wean him off Paxil and then start him on Effexor. He was taking 50mg Paxil per day, gaining lots of weight. Doc reduced Paxil to 25mg per day and he came unglued. Crying, headaches, vomiting and just ill. Wife feared this was shunt failure again so we have gone for another CT and Xrays. Because of our concern the tests were looked at quickly and we were told the only significant change from last tests was loss of gray matter. An honest answer please, will this just keep getting worse with time and make him more disabled? Anyone else walked in our shoes? Thanks for any input.
Hi, I have just joined this site, and have had hydrocephalus since 1970 at age 16 after suffering a ruptured cerebral aneurysm followed by that being clipped and a large AVM being removed. Following development of hydrocephalus, I had a spitz holter shunt inserted which has been revised about 8 times now. I have some physical problems following the bleed, and poor balance, visual problems and very poor short term memory and poor concentration from the hydrocephalus. I have therefore had hydrocephalus now for 48 years and take each day as it comes. I was told there should be no reason why I shouldn't live a normal lifespan and certainly hope for that, but who knows for sure what fate has in store for any of us. I'm not a medical person, but was told that someone with hydrocephalus will always have a slightly raised IC pressure. Possibly the loss of grey matter could be a consequence of that? Not sure if that is true. God Bless you and your family.
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