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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 He couldn’t work, stopped driving, couldn’t play golf without falling and became withdrawn and overly emotional.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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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 ReactionsThere is a clinical trial comparing shunts you may want to enroll your spouse in. The good thing it’s totally treatable.
https://nphstridestudy.com/for-hcps.html?utm_source=google&utm_medium=hcp&utm_campaign=patient_recruitment&r=2&gad_source=1&gad_campaignid=21985726440&gbraid=0AAAAA-b8WuRSq0N87lKfe6PlpO9VBP476
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.
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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2 ReactionsWe 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.