Dreading “high-volume lumbar puncture”

Hi Itecato, my husband has NPH and peripheral neuropathy in both feet. He underwent a lumbar puncture, then a high-volume lumbar puncture a couple months later. We live two hours away from the hospital where the second procedure took place. He reclined in the front passenger seat of our car on the way home and then stayed in bed for about 12 hours. He didn’t get a headache, thankfully.
He will have surgery in two days to implant an adjustable shunt to drain the excess spinal fluid. He has had the typical symptoms of NPH for a few years now and we are hopeful the surgery will return him to his previous state, able to drive, play golf, think clearly, and walk without falling. He is 78 years old.
Good luck to you for a painless and successful procedure. If you do have NPH it will benefit you in the long run to get it treated sooner than later.

My hubby had the high volume LP and they had him lay flat for 2 hours, then began the physical therapy testing. He was fine. No headache. He went from struggling to walk with a walker to walking unassisted. He was told that if he felt a headache coming, to lay flat for an hour or two. A month later we scheduled the shunt. It’s been a game changer…..my hubby is able to play golf again after 3 years or rapid decline.

I had my shunt implanted in August after years of waiting for a diagnosis for my wonky gait. We've had to fiddle with the setting on the shunt a bit, even turned it off for about a month. The headaches started in again, so now I'm set at 7, which is the lowest setting. My gait has improved since but I'm still not headache free. My memory is improving a bit also. I believe some of my symptoms are due to small fiber neuropathy, which was diagnosed 4 years ago. I see a neurologist next month for review.
I believe the plan is to advance the setting much slower than it was done originally.
I had the 'high' volume spinal tap, which was problematic since I have such severe lumbar stenosis. Took 90 minutes to get 29.5 mL and they wanted 40 mL, but my symptoms improved immediately afterward. No headache but I believe that's because the retrieval of CSF was so slow!

I was diagnosed with NPH this past Spring. I believe I would be using a wheelchair at this point if they did not find that I had NPH. To diagnose, I had a lumbar puncture where they took some fluid, it was amazing my gait was almost back to normal. A week later, they scheduled a lumbar puncture drainage where I was in the hospital for 3 days as they took fluid out every hour, 24 hours a day. Is this the same a "high volume lumbar puncture"?

Although it was not fun being in the hospital for 3 days, getting no sleep because they came every hour to discharge fluid, plus having a catheter in my back. I had no headache, PT came to see if any changes from the symptoms and I have to say it was a miracle. I practically ran down the hallway. Several weeks after, I had a shunt implant. I was discharged from the hospital the next day, taking only Tylenol. I did not experience any pain from the lumbar puncture drainage, even afterwards nor the shunt surgery.

I wish you well and I hope it goes well for you. Having these diagnostic tests and shunt has been truly life changing. I am only 55, younger than most who are diagnosed. For 10 years I was going to doctors and I kept getting, "its just natural aging". Its well worth the tests and the surgery if you have NPH. You definitely want to make sure it is.

I want to thank everyone for the feedback and support. I have decided I am going to go ahead with whatever the doctors recommend.

I also have dysphagia that was so bad that I had to have a feeding tube for a while. (It kept falling out and eventually I stopped having it replaced.)

I have been working with a speech-language pathologist to learn how to swallow better for a couple months and making some progress but lately I’ve been biting my tongue a lot when I chew food. It happened again last night and it occurred to me that maybe the NPH was affecting my eating as well as my balance, so I Googled “NPH dysphagia” and found out that the two conditions are known to be related, at least according to Google AI. It also told me that the shunt can help.

I am still not forward to going through with the lumbar puncture but I am willing to try it because the dysphagia has caused me even more problems than the loss of balance.

Thanks for all the kind words and advice!

Sorry your going through this ouch timeframe. I'm familiar with back surgery but not the procedure you described. Heard of it only. Hope you don't get the headache after especially a long hanging around one. Ugh. Here's to really good results for you. Since your Dr. said you might not have the neuropathy it'd be awesome if your results help confirm he'scorrect & you end up feeling a heck of a lot better. All the best to you@ltecato

welcome to the group,
only thing i can say is don't chew anything before the procedure and things have come a long way since 76 and conditions have improved immensely over time due to the volume of procedures done and teaching methods, a newer hospital helps with latest and newer equipment.

good luck and ill send a prayer for you.
rzndy.

How nice to hear your update. Thanks for this. You're learning alot too by the sounds of it. Good work. I hope the next steps get you some improvement. Thanks again for the update. We're all rooting for you. All the best.
@ltecato

From what I learned from recent experiences between myself & my DH, the key to not getting the headache after a spinal tap is don't let them pull the fluid from your spine. You know, to make it go faster. My spouse had >30 mL of CSF withdrawn from his spine & they pulled back on the syringe. He ended up going back to the ER for a blood patch 2 days later.
When I had mine, the neurologist let it drip out, SLOWLY. He was soooo patient. The result was less fluid than they wanted, but I had no headache. So you might be more uncomfortable lying on your tummy for 90 minutes, but to avoid a headache it's worth it.

They'd warned me about the headache. Didn’t get one. The upside down and gradually leveling off & still
resting mode could be why? Hope you luck out too. 💜

@luvnursing52