[billsf100]

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.

[LIZARD]

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

[billsf100]

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.

[LIZARD]

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

[billsf100]

Originally Posted by LIZARD

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.

[LIZARD]

Originally Posted by billsf100

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

[mister]

Hello:

Wanted to let you know that although I have had hydro for 53 years now and was born full term and was shunted at 3 months I can honestly say one of the best sources of information on hydro in this forum is Lizard and I have a great deal of respect for her and her dedication and help of others in many areas.

I think the information she has given you is valid and wise. As well verses as the Doctors may be in their field of training there are questions and situations that come up over time that they can't answer aswell as a parent might like because sometimes they just don't have the answers.

The holter shunt was first used in the 1953-55 period and works as Lizard has pointed out. I had one from the age of 3 years to 19 or 20 and have had several revisions and upgrades since.

You can ask for a second opinion if you think it would benifit your understanding.

My thoughts and prayers are with you all.

Not sure there is much more I can offer here than my best wishes for you and your family and that things workout for you all.

Regards Mister

[mjb1966uk]

Lizard has answered pretty comprehensively as always, but I'll give my input anyway

She's right in that the oldest person with congenital hydrocephalus would be in their 50's but there are people older with shunts who have developed hydrocephalus later in life due to tumours, head injuries etc.

I was born 6 weeks premature in 1966, so I've had hydrocephalus for almost 42 years, and have had only 4 shunts in that time.

The shunted hydrocephalus only affects me in that I've got absolutely no sense of direction, my short term memory is awful and my concentration can be poor at times.

However, I got good exam results and work as a web developer for the Government, so I don't think my condition has held me back too much.

Having said that, I've no idea if my faculties would be worse if I'd had more operations.

I don't drive, maybe because I'm worried about my poor concentration, but probably more related to the anxiety disorder I've suffered from for 30 years. This condition may or may not be attributable to the shunt revisions / trauma during childhood.

So there's no evidence of a reduced lifespan, because there is no data to support it (given that the eldest of us with congenital hydro is in their 50's).

Of course any invasive surgery in the brain carries some risk, and the time before a shunt revision (when the intracranial pressure is high) can cause some loss of brain cells, but there's no way of saying how much damage is done, it purely has to be assessed on an individual basis.

In England we only got shunts in the sixties, and even then there were only 2 hospitals in the entire country that could carry out the operation.

So I feel pretty lucky to be here at all, to be honest.

Mark

[willyben]

I knew I was Hydro Cephalic since diagnosis at age 9. All I was ever told through life was, don't hit your head. But I was told I would have to try harder to keep up with everyone else. I had a stress ulcer and lost 90% of my stomach during my original hospital stay. Most issues I have ever had came from the stomach issues, and those were all due to scar tissue issues. I was a study case when diagnosed as they did not yet know much or anything of "Onset Hydro Cephalic condition. It was said I must be like a miracle to have survived so long. I only had two brain surgeries at the age of 9. The shunt being put in during my second. Since, I have lived what I think may be an above average life. I won Music, Art, and Photography awards, became a three palmed Eagle Scout, went to college and eventually earned a degree, married a body builder young grandma at age 27 and became an instant PaPa. I went to the Philippines the summer after 9/11. And I have a small but world outreach ministry. We are all different as others have said. I was told of my life expectancy of 30 at age 33 while my wife was losing her battle with Cancer. Point is... I am soon turning 50 in February. No one knows the future. Live life to the fullest possible, considering our individual conditions. Cherish what we have now. And thank God for having each other for all this support. I have been seeking to find you for a long long time now. Thank you again for being here. I am definitely here also for you.

[Diffie]

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)