Anyone here have any experience with hydrocephalus and the outcome following surgery or medications?

My mom had nph. She had surgery to insert the shunt, after which her overall mental acuity, balance, and incontinence improved, for about 6-8 weeks. Then one day out of the blue, she couldn't lift herself after using the toilet. Shortly after that, she walked into the office in their home, sat in my dads chair and started using it as a toilet. It was hellish year that followed. I don't know what happened. We found supposedly the top surgeon in our area who operates on major league athletes and everyone who's anyone, all the best care, but none of it worked. I do think our/her experience was unusual. I've spoken to a few physicians since then who seemed very surprised at the trajectory of her illness. They've all said that most people do just fine. I've often wondered if the surgeon made a mistake. Or maybe it was just her time to go. I really don't know. I miss her terribly, but I sure don't miss seeing her in that condition. 

Wow, expected to see more responses. My Dad was diagnosed with NPH, and they can only tell by looking for changes in the size of the brain using CATSCAN and they confirm it by removing a bit of spinal fluid from the lower back and seeing how he responds. My Dad responded well and he had a programmable shunt inserted. He seemed to improve his balance and his memory slightly but then he had side issues from it that were extremely uncommon. His tube was irritating his internal organs, and while some doctors insisted you have no sensation there and it was impossible, they agreed to shorten the tube. They went into his abdomen and for this. During his healing period, he did things like push ups onto the part of the stomach that was healing and at one point he actually broke the skin and with the drain and it sounds impossible, but you can't make this stuff up. He has a very difficult personality and when the dementia started, his ideas were difficult to dislodge and he did things that harmed the whole process. It then became impossible to reason with him about the adjustment of it, and his caregiver got so disgusted, decided the whole thing was worthless and he still has it, but no one really can tell if it set properly for his brain because aside from behavior its efficacy is judged by the CATSCAN and problems from the shunt look the same in many cases as lesions caused by physical trauma (falls). So, if your Dad is reasonably healthy and not totally nuts, give it a try, otherwise, not. It does help, many many people, but perhaps if caught early.

I'm so happy that your son did so well! That's great to hear.
Carol

My son, at age 21 discovered a huge (size of an orange) neuroepithelial cyst in the center of his brain. Caused massive headaches. They opted to removes the cyst--which was simply a "balloon" of a cyst wall holding all this extra cerebrospinal fluid in it. It was effective---although he had some bleeding in the brain (technically a stroke) the deficits were pretty quick to resolve. He developed hydrocephalus as this space continued to fill with fluid. A shunt was placed, draining the excess fluid into his peritoneal cavity. He had no side effects from that surgery. Went on to graduate college with honors and then law school. We were SO grateful he was young and healthy and able to be healed. The ONLY way you'd ever know he'd had these surgeries is that his right hand will tremble when he's really, really tired. I think only his mama (me) sees this still.

Untreatable hydrocephalus--wow, all I know is that they can do spinal taps and decrease the pressure in the brain, but it comes back, pretty quickly.

I recently had a patient who was kept at home with hydrocephalus. He was not a candidate for a shunt. Find out if this is an option for you. The family was deeply faith based and they had hired a wonderful caregiver. There were sons who lived nearby and they helped. At the time I saw him he was moved using a Hoyer lift and was hand fed. His prognosis is death when death comes. I am terribly sorry if a shunt is not possible but one must accept the things in life that are inevitable.

Most of the time the surgery, which often involves putting in a shunt to drain off fluid, is successful. My dad had one put in (he had a severe head injury during WWII and as he aged fluid began to build up behind the scar tissue).

I must tell you that his surgery was a disaster. He ended up with a voice in his head, paranoid and, well, total dementia over night. I'm not saying this to scare you. It is generally safe. Just be sure it is needed and that you have an experienced surgeon. Many people (even young people) have had their lives remarkably improved by this procedure.

Take care,
Carol