Hi

I am new to this board-second post. I have had hydrocephalus since birth(some 60 year ago and am NOT shunted-I function normally and have an IQ of 133 and work as an expert witness and testify in court)I am recovering from a concussion and I can't seem to get doctors to understand how potentially serious this is. They look at the CT scan and as long as there is no hematoma they send me home w/a pre-printed sheet of instructions. I am NOT your average person w/a bump on the head. I get "Post Concussion Syndrome" that can last for weeks-dizzy, light headed, weak, queazy(?) stomach, foggy feeling in the head. The only doctor it seems that can properly monitor my condition and improvement/regression is my Chinese Dr. through TCM-who, btw is an MD, Neurologist, w/another Phd and Masters degree and a Post Doctoral Fellow at the University of Pennsylvania and who practices acupunture.

So my question is: "Has anyone else had experiences w/Post Concussion Syndrome and have you been hospitalized for it? In the "good old days" I was kept in bed in the hospital for three days and observed and taken care of. Now I am alone to fend for myself hoping I don't fall again and die before help arrives.

Thoughts/Experiences anyone?

Thanks, Bob

Hi Bob,

I don't know if I can be of much help, but I can tell you what I know of my own experiences. I too have congenital hydrocephalus, am 40 years old, and am not shunted (or otherwise had my plumping redone ).

All joking aside though, you are right. You are not just your average person with a bump on the head. I have every one of your above symptoms on a daily basis, even without having Post Concussion Syndrome. Then there's the headaches as well, the bane of my existence...

Everyone is different of course, but for me anyway, all of these things serve as a sort of "pressure gauge" if you will. I can tell when things are getting out of hand up there, and it's time to just stop, slow down, and take it easy for awhile.

And that might be my best advice. Really rest, and give yourself time to heal, even MORE time than just an average person with a bump on the head.

I'm glad you have a doctor you can trust though, that's so important!

Feel better soon,
Kathy

Hi Bob!

I had IICP because I got a concussion and it got worse for about six months before they figured out what was wrong with me. It was purely aweful!! The accident occurred in July and I finally had a spinal tap in Jan which relieved the pressure and I've been on the road to recovery ever since.

But I was diagnosed with PCS because I was getting so much worse until that time and now the doctors wonder if the iicp caused more damage that I am now healing from.

I was hospitalized in Jan for sever spinal tap headache and then put in a rehab hospital because I was unable to walk for months before the spinal tap and needed help to walk again.

But I was not hospitalized before then, and I couldn't walk. I couldn't function at all by myself. If I had to rely on myself to get my own food and water, I would have become dehydrated and malnourished. Luckily, my boyfriend took care of me. My dad was trying to get me into a home for people who have tbi's, but it seemed unreachable at the time.

Luckily, I am doing much better now and hope to return to driving and working at some point in the next few months. I was very healthy and active and worked an average of sixty hours before the accident and when I start working again, it may only be part time.

I think the hospitals and medical care have changed since you were put under observation and I would certainly agree that you are not the average concussion patient. I want to let you know that I'm very sorry you have to deal with this, it's really aggravating and frustrating from my point of view that you do.

I certainly hope you are doing much better! And continue to improve!

~Kim

Hi Bob,

I do not have hydrocephalus, but I have been suffering from Post Concussion Syndrome for almost three and a half years now. This was my second concussion at the time, and it happened just from a simple fall on ice in the parking lot at my work. I was otherwise, completely healthy and had no prior symptoms of vertigo, migraines and functioning problems that I deal with on a daily basis. I can honestly say that I haven't really found too many good answers about this problem, and it is so frustrating to basically hear, "We'll just wait and see what happens. You should get better eventually." After having this for so long now, my Neurologist has kind of changed his tune though and said I may be stuck with this for life. This to me, is something I can't imagine living with since I still can't drive, work and still have all of the normal concussion symptoms to boot!

I certainly agree that finding the right doctor can make all of the difference, especially one who understands! Anyways, I hope you are feeling better by now or have found some more answers. I am still on the search for a good doctor, as I feel I have not yet found the answers I am looking for. Post Concussion Syndrome is very frustrating and I would never wish it on my worst enemy! Good Luck.

I have hydrocephalus and I was born with it and I am shunted and I recently hit my head, then showed sign of a shunt malfunction for a day or two and now I have a headache that's been on and off for a week (it doesn't feel like a shunt headache, but I figure I should mention it).
My question: Should I talk to my neurosurgeon and maybe check and make sure the shunt is working as it should or am I fine and I can just continue with my life and the headaches will go away?

~Jo

If the problems remain for very long at all, it would be very wise to have yourself looked at. I hope that you never have known or will know the problems that can come from not doing so. If the problems have lessened, they may still be important.
If you are alright now, that is what matters most. Don't wait to see a professional if you truly feel that you should-emotionally and physically.