NPH is a tough road.

@meagroth
Do you have a shunt or are going through the testing? My daughter was hospitalized for 3 weeks late in 2025 so she has had to get her strength back before she sees a neurosurgeon. She sees her neurologist in a couple of weeks. It's been a long journey to get her back to where she was a few months ago. If we can help you or perhaps those who have a shunt already, don't hesitate to ask. We all need support.

@meagroth I hear you!! I had issues for years & even after the shunt, my symptoms haven't totally improved but I'm doing PT and considering trying the gym again.
My frustration is with the neurosurgeon. I had issues with headaches afterwards & he even tried turning the shunt off. Of course the headaches worsened. Now it's on the lowest setting on the Certas-Codman shunt & it appears to be better for the last 5 months. But to tell his nurse to tell me, "I don't think she has or has ever had NPH" was very upsetting, especially after going through shunt surgery.
Consequently, I'll be asking for a different neurosurgeon for future followups.

I should have replied to @megaroth not to @luvnursing52 sorry.

@megaroth
I don’t see my reply to you that I thought I posted so apologies if this is repetitive. I just wanted to say that doing PT and returning to the gym sounds positive. And if you did all the required testing before you received your shunt why does the surgeon think you might not have needed it? Sounds like a discussion to have.
My daughter attends a monthly zoom meeting through the Hydrocephalus Association. The next one is Wednesday, May 20th from 6-7pm est. It’s informal and they have small group discussion to discuss issues about the shunt. It’s been valuable for my daughter to hear the pros and cons while she’s waiting to see a neurosurgeon.
Thank you so much for sharing your experience. Continued good wishes on your journey. Barbara

Thank you for posting this! My husband has been diagnosed with NPH that has been a year in confirming. Shunt surgery now scheduled for May 19th. We are hoping for a great outcome. It made me feel so much better to see someone else had began this journey with a big decline in executive functions as that is at the top of the symptoms for my husband. His urinary issues are second and the gait, well that is a third. Initially, we thought, well the gait is not what we have seen on videos so they may not do the surgery. The new computerized/camera study at Mayo showed an improvement with the spinal fluid drainage the second time around. I am hoping it helps with his executive functions as that as been the most difficult time for both of us. I hope your husband had much improvement with his surgery.

I was diagnosed with NPH in my 40s (very rare) after feeling like I was progressively losing intelligence for years with no diagnosis, then finally starting to fall down, which finally lead to testing and the diagnosis. I got a shunt, which sounds scary, but it saved my life, my sanity and most of my mental abilities. Getting a shunt stops the damage. There really is no alternative, but it only SEEMS scary because it is close to the brain. They do have to put a hole in your skull, but only enough to drain the fluid. It’s not like other kinds of brain surgery where they would be doing surgery on actually functioning parts of the brain. The surgery merely allows the fluid to drain away and stop compromising the brain with pressure. And the shunt is magnetically controlled, so it can be adjusted later without further surgery. (You do have to stay away from magnets, however. For example, if you ever need an MRI for anything, you have to get your shunt reset immediately after. And don’t get a cover for your laptop—even the small magnet that holds a laptop cover shut can screw up your shunt if it got too close. Mine did. And don’t get that fancy new induction stove—that could affect the shunt, as well. Thankfully, we figured that out before buying one.)

Unfortunately, by the time I got the shunt, my brain was permanently damaged and some of my mental abilities continue to be compromised. I describe myself as having “swiss cheese brain.” Some things improved, and some things I had to relearn, but I still have “holes” in my abilities. I can’t do math, for example (I had been in the top of my class in school). Your husband may always have some functions that don’t entirely come back, but many should improve with a shunt, and once he is stabilized he should be able to relearn some, and figure out how to “work around” those that are permanently damaged. He may never get all of his abilities back, but at least once stable, he’ll know what abilities he has to compensate for. You may have to take the lead in some areas of life, or hire a professional in some areas. (My husband does all financial math and other math tasks—I just know my brain won’t do it, so I’m OK with relying on him.)

This is very good info for my daughter who is being considered for a shunt. She is in her fifties. Thank you for sharing your experience with others on this journey. Best wishes for continued good health.

@again Thank you for…I was diagnosed in my early 50s, but the symptoms began in my early 40s but doctors could not figure out and told me it was just aging. I finally went to Mayo and once I got my shunt, I got my life back. I am still having cognitive issues, and some gait issues too, but not as bad as it was. I appreciate your thoughts of what to watch out for and avoid. Good information. It has just been a year since my implant and I am still maneuvering life with a shunt, am I overreacting when I feel like something is wrong. I wish there was more information discussing when to go to the neurologist or is there such thing as having to have a yearly checkup? Questions I have….Thank you. Again, I appreciate your thoughts. I am not one to seek out medical help when something seems off.