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barbwith3cats avatar

NPH is a tough road.

Brain & Nervous System | Last Active: Oct 24 7:59am | Replies (27)

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Profile picture for ortina2023 @ortina2023

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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Replies to "I’m curious about the timeframes - lumbar puncture test came first, then how long was it..."

Hi, so the lumbar drain happened 1 week later. My surgery took place the following week. It happened so quickly. I laugh because we also had travel plans. We had a 2 week holiday in Africa 3 weeks after the surgery. My surgeon agreed, he just required that I saw him 2 weeks after the surgery to make sure everything was ok.

I also wanted to let you know, I did not have any problems right after the surgery. The only pain medication they gave me was 2 tylenol every 6 hours. Honestly, I felt better right after the surgery, I could walk well immediately and they discharged me the very next day. I did take a couple of days to go back to work.

My husband I came back from Africa. I have only been vigilant on paying attention to any sort of relapse. We were so busy that I was tired. I think this may have had an effect on things like walking or cognitively. I am still walking way better than I was before I had my surgery. Also, my surgeon told me he had my shunt at the lowest setting and when I see him next, he will make adjustments based on my observations. Traveling was no problem, even going through security 🙂

Just one other thing. I have read in the research I have done on NPH, that it is difficult to diagnose because it has similar symptoms such as Parkinson's, Alzheimer's, and Dementia. If I was not as aggressive about finding out what was wrong with me, I could have just chalked it up aging and begun to continue to deteriorate and my life would have been shortened. The reason the timeline was so quick was because my husband became pushy, and because of our trip to Africa and asked how soon i have the surgery. Plus I wanted the surgery because I had been so distressed and tired from not being able to walk, not have my memory gone and the incontinence!! I have realized we have to be advocates for our own health. I was my mom's and my dad's advocate because they were not. I am very grateful to my surgeon for being thorough and moving the timeframe quickly. I had a GREAT holiday in Africa, because I could walk!!