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NPH is a tough road.
My husband has NPH. In the beginning he was diagnosed with memory loss and executive function issues at 64. His MRI showed enlarged ventricles. For the next 3 years he slowly declined. He couldn’t work, stopped driving, couldn’t play golf without falling and became withdrawn and overly emotional. In the last year he was struggling to lift his feet when he walked, fell a lot due to imbalance, constant headaches, emotional upset, extreme fatigue, sporadic urinary incontinence, brain “fog” and confusion. With NPH there is no intervention until your symptoms meet a certain level. His diagnosis is decompensated NPH.
After a large volume lumbar puncture, my husband could walk without a walker, the falls stopped and he said he felt the brain fog had cleared so he could think again. For the next 10 days he was remarkably better and now all the symptoms have gradually returned. Due to all of this, we have scheduled him to have a ventriculoperitoneal brain shunt with magnetic adjustment implanted under the scalp. While the shunt is a scary proposition, we can see light at the end of the tunnel.
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@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.
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2 Reactions@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.
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1 ReactionI 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.