NPH is a tough road.

Unfortunately, Barb's response is right on the money. As individuals, we'll all have our own path to tread, or to shuffle along, as the case may be. The degradation of blood supply over time cause deterioration in all systems, including the vestibular system, which keeps our eyes about 1.6 meters above the ground all the time when we want to stand or to move. Also known as 'erect and balanced'. But the brain, itself, as lost some ground, as sad as that must be. The brain is great for repairing itself, not quite so much the vestibular system. With therapy, the brain can regain all or a great deal of its former potency. A wonky vestibular system can also be retrained, but it's not easy....or fun. And I'm only guessing here that it IS his vestibular system...it may be quite fine and something else is going on. Whatever we're dealing with, it isn't going to return to normal a lot faster than it took to get to the former low point. Ideally, yes, there will be some gratifying changes, but some work needs to be done, and maybe even kept up for a good long while, perhaps forever, in order to keep from backsliding.

I just wanted to let you know that we sympathize, we do understand, and that your best friend in all of this is optimism, and maybe a little prodding on your part. A mix of mom and partner, if you will.

I think the key with shunt recovery is to be patient. I really don't know when my NPH started, but I suspect it could be as long as >10years. The symptoms were very subtle at first, until they weren't. My cognition and short term memory have improved slightly, but my gait is the one thing I still struggle with. Some days are better than others. I still have daily headaches, but they're mild for the most part. From what I've read, in general symptoms take a year to improve. Bottom line, make sure you have support and do whatever you can.

I had surgery May 2025 and cognitively, I am still having some difficulty however, walking has been much better than what it was. It was truly amazing. Last week, I recently had my first "NPH" fall. It felt like before I got my shunt, I lost control of my legs and I fell. I also notice that I need to still hold on to a railing sometimes because I am still a bit unsteady. My surgeon ordered a CT Scan and found no changes from my last scan. I have not done PT, but I am going to try because, 1. my legs need strengthening, 2. after 10 years of compensating for my "NPH" gait, I have to undo the bad habits I developed.

I was diagnosed at age 55 years old, I began to have symptoms 10 years before, mainly falling and my cognitive began to deteriorate and the symptoms progressed. My doctors told me it was "normal aging". So went to Mayo and they find it within 3 months.

I am doing very well, so much better pretty instantly and maybe that has to do with my age. I think for me, I need to realize, I am not that 20-some self again who can do everything, but I need time as well...and I have to be patient and understand that there will be some relapses, NPH is not gone, but hopefully it won't be like when I fell last week. As I said, the good news, I am doing remarkably well and I can go on great travels with my husband without telling him I can't walk.

Thank you all so much for your comments. I can see now everyone is different in their recovery, patience is required, and help and support for the patient goes a long way. Follow-up with the neurosurgeon is Monday. Home Health will be here Tuesday for Physical and Occupational therapy.
I wish you all progress on this ‘tough road’. It really is, for both the patient and the family.

My husband had his shunt surgery on November 20, 2025. There was some improvement initially but then things went south. He woke up from a nap one day and couldn’t speak clearly, diagnosed with aphasia. A CT scan showed a chronic subdural hematoma. After a couple days in the ER, he was sent back to Salem for a shunt adjustment. Home again for a couple days, then another bout of aphasia which mostly resolved fairly quickly. On New Year’s Eve we were sitting on the sofa and he suffered a seizure. He had been complaining about headaches since the surgery. We called 911 and he spent two nights in the ER and two days in the ICU for observation. He was unable to control his body enough to use his walker, had serious balance issues and had no recollection of where he was or what landed him in the hospital again. He was sent to a skilled nursing facility for rehab where he still is until he improves enough to bring him home. A subsequent MRI did not show a cause for this, just noted the chronic subdural hematoma. When we can get an appointment with a neurologist and he can leave the skilled nursing facility, we’ll see what, if anything, can be done to help him. Hopefully it’s a matter of finding the right setting for the shunt.

@arrighi
Yes, my husband had shunt surgery in late November 2025 and had a seizure on 12/31/25 which put him in the hospital with no memory of what happened nor of the following 4 days in the ER and ICU. He’s currently in a skilled nursing facility for rehab. He has very poor balance and has trouble walking even with a walker.
What was your experience, and are you better now?

Dear Ortina2033, I’m so sorry. I hope he is making progress. I was inquiring for my adult daughter who was diagnosed with epilepsy at age 1 1/2. She was recently diagnosed with NPH and has had all the tests including the lumbar puncture. She will be seeing a neurosurgeon soon and we’re trying to get as much info as we can about the possibility of increased seizures with a shunt. Did your husband have seizures before getting the shunt? Have the seizures stopped or does he have to continue with medication?
Thank you for any info you can provide.

@arrighi
No, prior to his surgery he did not have a history of seizures. So far he has had only the one on 12/31/25. He is taking Keppra twice a day now, an anti-seizure medication. We don’t know how long that will continue.
I’m sorry about your daughter’s diagnosis. NPH is difficult enough on its own. I sincerely hope she does well. And I should stress, I am not a doctor or medical person so all I can do is offer my husband’s experience which may not be applicable to anyone else. We are all such individuals. Best of luck to your daughter. I wish her, and you, success in this journey no one wants to take.

Thank you and understand completely. We're just looking for every bit of research as well as lived experience, so your husband's experience is valuable info.
Wishing you and your husband the best outcome possible.
Any updates will be appreciated.