NPH (normal pressure hydrocephalus): Let's connect and share

Hi Erin, apologies took me so long to see your kind message. Yes, your message is helpful. Seems to me that sometimes there are conflicting diagnoses (NIH and Mayo), which produces even more worry. I do know that tests have to be conducted to see if one is a candidate for a shunt, and from all my readings, a shunt may also cause a number of complications once inserted....so nothing is a perfect solution to NPH, seems to me. My own complication is that I also have Adhesive Arachnoiditis finally diagnosed in 2010, and current symptoms of NPH can also be signs of progression of AA. I am so looking forward to my first evaluation appointment next week at Mayo. And efforts to tease out both neurological conditions. NPH has treatment, AA does not. Thanks for writing, Erin. I learn so much from everyone.

My husband has the same issue, it started when he fell 15 feet six years ago. Now his shunt is open all the way and I'm very concerned about all this. What happens now when the shunt stops working would he go through a different surgery or is there more that can be done.
The doctors will not talk to me because I exploded on them.
(My story)
My husband was fine when I married him. He would get nose bleeds when the season changes, in 2005 or 6, he got his nose operated on and stopped his nose bleeds, this outcome caused very bad migraines and he started to pass out. The doctors gave him migraine shots which seemed to help at times. In 2013 he went to work, he told me that he was feeling good and that his migraine was making it hard for him to concentrate, I told him to leave early and contact his doctor. He said no that he would be fine.
20 minutes later I get a call stating that he fell 15ft and that the only thing that was wrong with him was a cut on his right side of his head.
Between 2015 to now (can't remember the dates sorry) he went through brain surgeries.
The first surgery was on his neck, where the doctor told us was scar tissue, and they had to remove this for the swollen cerebellum to have room, the tonsils were also coming down to inter his spin to stop the fluid to flow. I told the doctor that he shouldn't have moved the full scar tissue cause now they opened the dam and the fluid is rushing through with nowhere to go but to flood the brain.
When they placed the 1st shunt everything was working fine until he started to change about what he felt about himself and didn't want to do anything but complain. (6 months) They replaced it with a new one. The 2nd shunt became infected and they wanted to put a new one in while the infection was still there, and I said no that he can have the new shunt when the infection was gone.
(This is where I'm against the whole shunt thing) Before they took the infected shunt out, my husbands whole attitude about me as his wife had changed. He didn't want me anywhere near him, he told me that I was trying to kill him. I ignored him and when the infection cleared and they put a new one in, his attitude towards me has gotten worse. I couldn't pick on him or even go places with him without him exploding on me. (This shunt decided to stop working)
Now, this is the last programmable shunt, he can only go through MRI's in Pittsburgh because no other hospital has the machine to reprogram the shunt.
I can't joke, share my problems or concerns with him. When my daughter (his step-daughter) got pregnant he did everything for her. In my mind, he was acting as her husband/boyfriend and when I tried talking to him about it he said that he was being nice and he wasn't doing anything wrong, months went by his attitude got worse. We went to the doctor who put in the shunt and found out that the hose that ran behind his ear was closed off so he had to go through surgery to replace it. I told the doctor about his attitude and if they could place the shunt into a different area because I couldn't handle his mood swings. The doctor laughed and told me that I should leave my husband alone and not talk to him.
Now, he had to have the shunt open wider, he's repeating himself, he has no common sense now, and my feelings as a wife doesn't matter and the doctors will not listen to me at all.

If things don't change, the next step for me would be a divorce. I love my husband I truly do, but I can't handle the attitude from him, and the doctors won't listen, they call me the whining female.
Is there anyone else going through these issues of the shunt or is it truly me?

One option to anything physical is to wait 6 months (If the situation allows it) Brains are blessed with a special gift that is not full understood. Some adjacent areas have cells similiar to the affected areas. If you can advertize for a physical Therapist who knows the Maggie Knox's book"Proprioceptive NeuromuscularFacilitation Techniquws. with diagonal re-forcement, the technique is special for RECRUITMENT of additional pathways to establish normal motions.(You guessed it? I was an old time physical Therapist before sports medicine).BUY THE BOOK but what do I know? I'm only 90 yrs old with 40yrs of physical Rehabilitation. Reflex Inhibition of tonic necbk Reflexed may be necessary. Inhibition, followed with posturing and pulling off balance for reflex stepping can be helpful. Regular ranges of motion and re-ed are always part of a standard. No technique is good without using all resources of rehab. Even, eventually health gym with specialized strengthening , agility, balance and co-ordination. What age???No such thing. Regardless of what you do, the brain itself with heal but more so with a challenge. Age is only a matter of tolerance. Hope this helps. Study, become in formed.

This is 9/2/2022 I am dating this response because there are so many old responses. Two day ago I was told that I have NHP. I am terrified. They want me to have a spinal tap which also terrifies me because I have been told it is very unpleasant. I am in Indianapolis. I went to Goodman spine and bran. I was told after the MRI that I didn’t have it so I was shocked. I have been getting progressively more lightheaded for over 5 years. I have been to many neurologists, ENT, heart, gastroenterologist etc. I have been to Cornel whiel in NYC, Vanderbilt, etc. at no time have I been told anything except that I am fine. It has gotten so bad that my legs are numb toes to knees and progressing. I googled extreme pressure in my cranial cavity and that my head feels like it is going to explode from pressure. Up popped this. I called family doctor and said I wanted an MRI and appointment with Troy Payner a surgeon. All of the doctors before never heard on NHP.
I am on eliquis, because of DVT twice and strokes run in my family. I hav extreme scare tissue in my abdomen because of radiation for cancer. So I don’t know how all of that would effect this stunt process. They have all blamed extreme lightheadedness on the radiation. I didn’t give up and kept pursuing a prognosis.
Would someone tell me about the procedure and how painful it is and what they have gone thru. I am the worst patient and have no pain quotient at all. I think of not doing it. What would happen. Etc etc. if you had to do it again would you? Any information would be helpful from people who have gone thru this?!!!

Hi @marymerry, Years ago when I injured my knee playing softball, I had a spinal tap for anesthesia before surgery to remove torn cartilage. I did feel a small sting but I wouldn't describe it as painful. I think that was due to the anesthetic injected in the spine. Here's some information on the procedure that might be helpful.

"A lumbar puncture is usually not painful, as a patient is first given a local anesthetic. Most patients feel nothing except for the mild sting of the local anesthetic needle."
-- How Painful is a Lumbar Puncture? Procedure:
https://www.medicinenet.com/how_painful_is_a_lumbar_puncture/article.htm

Thank you very much for a reply. I have only known for a couple of days. I am so horrified. Have you had a stunt and tubing in your body if yes was that painful
Thank you again.

I am new to all of this freighting NPH so I thank you also.I don’t know where to go for a second opinion. My feet and legs are numb but they don’t feel like heavy weights?

I know it's easy to worry after searching Google and reading scary procedures. What I think might be helpful is to discuss your concerns/fears with your surgeon or care team for the procedure. I've always found it helpful to talk with them before the procedure when I had a worry or concern. Here is some information on NPH treatment that I hope helps some.

"A commonly used treatment for NPH is surgery to place a tube, called a shunt, into the brain to drain the excess fluid. The shunt is usually inserted into a ventricle in the brain and then passed under your skin from your head through your neck and chest to your abdomen."
-- Normal Pressure Hydrocephalus: https://www.hopkinsmedicine.org/health/conditions-and-diseases/hydrocephalus/normal-pressure-hydrocephalus

Thank you once again. I really appreciate it.
I have had an MRI and concil with the nurse practitioner. I only get to meet the doctor if he is going to do the surgery!! A new world. If I don’t do the procedure it will not be a pretty scene. I am old and there are some complicated issues that will have to be addressed to see if it is possible. I have never met or heard of anyone wHo has had this.
Do you have NPH yourself?
Thank you once again

I don't have any personal experience with NPH but @Erinmfs and @joanmahon have posted earlier in this discussion and may be able to share their experience with you or answer questions you have.