1. < Brain & Nervous System

NPH is a tough road.

Posted by barbwith3cats @barbwith3cats, May 3 10:58am

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 He couldn’t work, stopped driving, couldn’t play golf without falling and became withdrawn and overly emotional.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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ortina2023 | @ortina2023 | May 4 8:17am

My husband, 77 years old, is going through the same. He hasn’t had the lumbar puncture test yet, but this coming Tuesday we have a consultation with a neurosurgeon to discuss his treatment plan. We are hopeful his symptoms can be lessened with a shunt, though we were warned the shunt may not relieve them all.
NPH is very difficult for both the patient and the family. My heart goes out to you, and wishing the very best outcomes for our husbands. Please keep me posted as we go down this road.

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2 replies
ortina2023 | @ortina2023 | May 5 7:21am
In reply to @jenatsky "There is a clinical trial comparing shunts you may want to enroll your spouse in. The..." + (show)

Thank you. There are no clinical trial study sites near us according to the application to enroll and the map. I would have encouraged my husband to join the study in a heartbeat. I (his wife) am in a clinical trial for chronic myeloid leukemia and it has been very successful. I do wish my husband could enroll in one as well.

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barbwith3cats | @barbwith3cats | May 5 8:27am
In reply to @ortina2023 "My husband, 77 years old, is going through the same. He hasn’t had the lumbar puncture..." + (show)
@ortina2023

My husband, 77 years old, is going through the same. He hasn’t had the lumbar puncture test yet, but this coming Tuesday we have a consultation with a neurosurgeon to discuss his treatment plan. We are hopeful his symptoms can be lessened with a shunt, though we were warned the shunt may not relieve them all.
NPH is very difficult for both the patient and the family. My heart goes out to you, and wishing the very best outcomes for our husbands. Please keep me posted as we go down this road.

Jump to this post

The LP test is important. If your husband doesn’t show any improvement afterwards they won’t recommend a shunt. My husband had a 51% improvement of one set of tests and 90% of another, 2 hours after the LP. Because he did show improvement, we were told he had an 85% chance the shunt will work. Those are great odds at getting his life back.

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1 reply
ortina2023 | @ortina2023 | May 5 9:07am
In reply to @barbwith3cats "The LP test is important. If your husband doesn’t show any improvement afterwards they won’t recommend..." + (show)
@barbwith3cats

The LP test is important. If your husband doesn’t show any improvement afterwards they won’t recommend a shunt. My husband had a 51% improvement of one set of tests and 90% of another, 2 hours after the LP. Because he did show improvement, we were told he had an 85% chance the shunt will work. Those are great odds at getting his life back.

Jump to this post

We are eager to explore any and all means to improvement. What he is going through now is heartbreaking. If he’s not a candidate for the shunt surgery I don’t want to imagine what will eventually happen to him.
I’m so glad your husband’s surgery was successful! How long was he showing symptoms before the shunt surgery?
We’ll have more information tomorrow after we see the neurosurgeon for our initial consultation.

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sandrabum | @sandrabum | Jun 23 11:10am

Hi, I recently have been diagnosed with NPH. It has been a long road to figuring out what was wrong with me especially because I am younger than the most. I am 55 years old. I started to fall frequently about 10 years ago, I just thought I was clumsy. Doctors sent me to PT which helped for a while. I also began to have cognitive issues, yet again, I thought it was the natural process of aging. My mom had Parkinson's so I was worried that I might have that because walking became difficult. My daughter observed that I was shuffling and ending up on my toes pulling me forward. After much testing at Mayo, I was diagnosed with NPH. I was recommended for a shunt and had the surgery over month ago. I keep saying it is a miracle. I can walk without any issues. My cognitive is not 100% but it is better than what it was. I feel like I have my life back. After 10 years of my body deteriorating, It really was a miracle for me. I have an appointment with my surgeon in a month to make any adjustments i may need. I am writing down any thing that I notice beginning to come back. I am very happy that I had a shunt surgery and grateful for my doctors. I went to Mayo in Arizona.

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1 reply
ortina2023 | @ortina2023 | Jun 24 8:59am

Tomorrow is his lumbar puncture test! I am hopeful he will show improvement afterward. He also has been having symptoms for a long time and hearing you did, too, and still had a reduction in symptoms after your shunt surgery gives us hope! I’ll make sure to come back here when we know how his test turns out and update you. Fingers and toes crossed!

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1 reply
slarson14 | @slarson14 | Jun 24 10:12am
In reply to @sandrabum "Hi, I recently have been diagnosed with NPH. It has been a long road to figuring..." + (show)
@sandrabum

Hi, I recently have been diagnosed with NPH. It has been a long road to figuring out what was wrong with me especially because I am younger than the most. I am 55 years old. I started to fall frequently about 10 years ago, I just thought I was clumsy. Doctors sent me to PT which helped for a while. I also began to have cognitive issues, yet again, I thought it was the natural process of aging. My mom had Parkinson's so I was worried that I might have that because walking became difficult. My daughter observed that I was shuffling and ending up on my toes pulling me forward. After much testing at Mayo, I was diagnosed with NPH. I was recommended for a shunt and had the surgery over month ago. I keep saying it is a miracle. I can walk without any issues. My cognitive is not 100% but it is better than what it was. I feel like I have my life back. After 10 years of my body deteriorating, It really was a miracle for me. I have an appointment with my surgeon in a month to make any adjustments i may need. I am writing down any thing that I notice beginning to come back. I am very happy that I had a shunt surgery and grateful for my doctors. I went to Mayo in Arizona.

Jump to this post

This is truly awesome! Congrats!

Anyone over age 60 thinking they may be dealing with this be aggressive with this, please push the physicians to test for this as it is SO treatable.

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sandrabum | @sandrabum | Jun 24 11:44am
In reply to @ortina2023 "Tomorrow is his lumbar puncture test! I am hopeful he will show improvement afterward. He also..." + (show)
@ortina2023

Tomorrow is his lumbar puncture test! I am hopeful he will show improvement afterward. He also has been having symptoms for a long time and hearing you did, too, and still had a reduction in symptoms after your shunt surgery gives us hope! I’ll make sure to come back here when we know how his test turns out and update you. Fingers and toes crossed!

Jump to this post

After my 1st lumbar puncture, I improved immediately. They then did a lumbar drainage which was for 3 days. Again, I improved for a much longer period afterwards. I will keep my fingers and toes crossed!

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ortina2023 | @ortina2023 | Jun 24 12:23pm

I’m curious about the timeframes - lumbar puncture test came first, then how long was it until your three-day lumbar drainage, and finally how long was it before you had the shunt surgery?
I really hope my husband will be well enough soon to travel and go see his best friend who was just diagnosed with pancreatic cancer.
I’m so glad this terrible journey has had a good outcome for you!

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