Hi,
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.

I'm so sorry! I haven't been here for about a week and just saw this. I'm just a well-read lifelong hydro patient (41 yo), and I can't answer your questions definitively, but I do know that the effect of each surgery is cumulative. I have had six myself, along with some complications here and there. It sounds like, in addition to having a much rougher start early in life (I was born on my due date), he has had many more problems with hydro (including many more surgeries) than I have. I live fairly normally, with some extra effort, but someone who has been through much more, even though much younger, is going to have a harder time with day to day functioning and, yes, possibly even an abbrieviated life expectancy. I can only say, as an educated guess, that the loss of gray matter will result in deterioration, but this is a question for his nsg. He may not know, either, but all of us are just patients and family members. I want to give you hope--really--but you need to talk to his doctors who know his history.


Good luck...

LIZARD

Thanks Liz for taking the time to write. Maybe nsg really doesnt know where all this is going. If he does, he is not willing to explain it all to us at this time. Being left wondering is a hard place to be as a concerned parent. God Bless you.

Hmm...it sounds like he doesn't know, either, which makes some sense. We're all different, and no one really knows what's ahead for any of us, sadly. Even the oldest of us to be born with hydro are only into the early 50s, about 10 years older than I am, so we (and our doctors) have no way of knowing how long we can be expected to live. I personally try not to think about it.


LIZARD

Hi Liz,
Are you saying that the oldest people living with hyro now are in there early 50s? No older? Is that due to the fact that successful shunt surgeries never took place before then? I wonder how the older shunt receipiants health conditions are now compared to others in their age group. Thanks for the insight.

Yep. With rare exception, that's the case. The Holter shunt, the first to have a one-way valve, was patented in the '50s. It was also the first to be made of a flexible silicone-rubber/plastic so as to allow for more normal body movement and better tolerance by the body to the material.

As for your other question, many that I know who are older than I am (I'm 41) are not doing nearly as well and also have other age-related issues to deal with (osteoporosis, thyroid conditions [which I also have], etc). Anyone who also has complications/secondary conditions related to hydro should be aware of how they or their treatment may affect those other age-related issues (e.g. long-term anti-sz med use may deplete vit D., resulting in increased risk of osteoporosis). Aside from that, there's also the effect of what decades of hydro can do to the brain, so it's not surprising that many 40+ers have serious problems.

LIZARD

Hi, Bill,

I don't know if you are still active on the forums since the post to which I am responding was posted in 2008. However, I wanted you (and others) to know that life expectancy with hydrocephalus depends on many factors including the different causes of hydrocephalus. Although it may be true that the oldest people with shunts are in their 50's, some people survive hydrocephalus without a shunt until old age. In my case, I was born with the condition but received no medical treatment for it until age 36 and my first shunt at age 40. I have had 5 more surgeries since then (a small number compared to many others) - the most recent being in April 2012.

Wishing you the best!

Lon
(Diffie)

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.