Hydrocephalus

[livingwith]

My name is Linda. I am 41 and I have had hydrocephalus for 31 years. I graduated from a top private college with honors, and have had very successful carreers. Recently my neurosurgeon who I had for a number of years moved across the country to California. He understood my case really well and really thought through what he needed to do to continue to make me functional.
Since May, 2008 I have been having a shunt failure. It has only been getting worse. It is difficult to find a neurosur...Read the full article

[mp327]

Linda--

Hi, my name is Martha and I just read your post and had to reply. I'm so sorry you are going through this. I, too, was diagnosed with hydrocephalus, only at the age of 39. My first experience with a neurosurgeon was disastrous! He happened to be in the radiology department as my CT scan was being read, so just by dumb luck, my GP referred me to him. His comment to me was "that's the worst case of hydrocephalus I've ever seen and I wouldn't touch you with a 10-foot pole!" I thought, oh great, I find out I have this terrible disease and this guy doesn't want to do a thing for me! Well, needless to say, he was immediately off the case. I went back to my GP and he referred me to a neurologist who ordered MRI studies. She then referred me to another neurosurgeon. His recommendation was a shunt, however, this didn't happen to be his specialty, so he referred me to another neurosurgeon who specialized in shunts. He was very confident that a shunt was the only answer and that he would do it, no problem. He wasn't much on personality, but he did the surgery and I had no problems. That was 15 years ago! and I still have the same shunt and have had no problems with it. On my last visit to a neurosurgeon (a different one, as we have moved to another state), I was told that the shunt was functioning very well and I didn't need to come back unless I experienced problems.

I can relate to some of the symptoms you are now having, as that was how I felt before being diagnosed. I really didn't know what was wrong with me, I just knew something was wrong. I would encourage you to keep pursuing this until you find a doctor who will treat you. Obviously, with a malfunctioning shunt, you are not feeling well and this can not go on. I don't know where you are located. My surgery was performed in Indiana, but being 15 years ago, I don't know if that surgeon is still there or not. My new doctor is located in Atlanta. If you would like more specific information, please contact me and I will give you the names.

My latest health challenge was being diagnosed with cancer of the anal canal in June 2008. No surgery, but chemo and radiation, which was no fun at all. I am 3 months post-treatment now and am feeling much better and they tell me the cancer is gone, as per the last CT scan a month ago. Of course, this will be a lifelong thing for me--rechecks every 3 months for 2 years, then every 6 months, perhaps for the rest of my life.

I sincerely hope you will find someone who will be willing to help you with your worsening symptoms. I would not quit until I find that person. Please let me know if I can help or if you just want to vent. I'm a good listener! Take care.

Martha

[mp327]

Hi Linda--

It's me again. I just wanted to pass on the following info to you, as it may help you in your search for a doctor in your area who will treat you. The Hydrocephalus Association has an e-mail address: info@HydroAssoc.org. Perhaps you could contact them for some leads. They also have a website: hydroassoc.org. I was on their website and there is some good info there. You may have already contacted them, but if not, it's worth a try.

I hope you find someone to help you resolve your returning symptoms soon. Take care--

Martha