NPH is a tough road.

I had a shunt implanted on 8/13. Immediately afterward, I felt great. My gait improved, balance improved & I felt some pain but mainly on the incision site, but felt much better. After 3 weeks however, my symptoms started returning. The shunt has settings range from 0 to 8, 8 means essentially off. They started with a setting of 5. The headaches started again, so I went back & they turned it up to 6. The headaches became much worse, so right now it's at 8, or off. My balance and motor skills have not improved. Now he's telling me I may not have NPH!! I go back on 11/4 for another check, but I think he's going to need to open it up to maybe a 7. I have a CT and MRI scheduled for later this month to see if anything has changed prior to the Nov. appt. Meanwhile, I'm going to make an appt. with my neurologist about this whole mess being due to small fiber neuropathy, not NPH. Very frustrated -right now. my insomnia is much worse, which doesn't help!

I’m sorry you’re having so much trouble. I had NPH, undiagnosed, for years, falling down frequently, etc. Thought I had alzheimer's because I was getting progressively more stupid. No one did an MRI—said it was in my head. Eventually they did an MRI, finding the NPH and placed a shunt. Years after the NPH resolved, with the shunt working well, I developed similar symptoms. After years of research and attempted treatments, I determined that my liver was not making enough glutathione. I was falling down, getting stupid (much more slowly) and had a lot of general pain. First I started taking glutathione. It worked, but quite expensive and I needed a lot to keep symptoms at bay. Finally, I started taking milk thistle capsules for my liver, and over time it worked. Symptoms went way down. I now take a capsule 2-3 times a week as a maintenance dose. I would suggest you get some and try it. Less than $20 a bottle, no side effects, may actually fix the problem. Take 2-3 a day for a couple of weeks to see if it helps. I think a lot of people actually have this problem from all the stuff in our environment that damages the liver, which may also cause a lot symptoms of what is diagnosed as auto-immune disorders. Once you start making glutathione again (if this is your problem), all types of pain are reduced and a lot of other seemingly unrelated issues resolve. It’s worth a try.

I'm familiar with milk thistle being very beneficial for the liver. I already have issues with my GI tract, so not sure about absorption. But I will consider taking some! Can't hurt at this point! Thanks for your recommendation.
It's nice to find someone who has had the same struggles as me with this difficult diagnosis.

Does anyone have seizures and has had a shunt implant?

UPDATE: Shunt surgery went well, 24 hours in the hospital at the end of May. We’re 5 month post op and physically my husband is 90 percent better. Walking unassisted, driving, and playing golf again. The brain fog is gone, but he still struggles with short term memory’s. The chronic daily headaches are gone. Just occasional headaches, but not horrible. The incontinence is gone. Emotional control and empathy is slowly returning. Overall the shunt has been a huge success.

@barbwith3cats Woo Hoo!! It has been just 5 months since my shunt surgery! Same here, 90% better...still adjusting such as my cognitive, emotional needs improvement. I did fall TWICE last week....but not because of NPH, because someone left their damn backpack on the floor in a darkened room and tripped over a cement parking hump. UGH!!! My spacial awareness still needs improvement!! So glad your husband is doing well. Photos: after surgery and 4 months later! My hair is coming back! hehe.

So glad you’re doing well. Your hair looks great !!