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NDPH: CSF Venous Fistula as Cause?

Chronic Pain | Last Active: May 22, 2023 | Replies (12)
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@mikaylar

Omg I have had NDPH for 3 yrs/9 mos, every day/all day. I had 5 spinal blood patches, nerve blocks, everything imaginable. Used Ketamine nose spray. I have a friend who had the Ketamine IVs for 5 days. You will have hallucinations and some pretty noticeable side effects. I am 76 so I refused it. My doctor is putting me on off-label lithium next. Where are you treating for this?

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Replies to "Omg I have had NDPH for 3 yrs/9 mos, every day/all day. I had 5 spinal..."
l1ll1anfaye | @l1ll1anfaye | May 21, 2023

I am in Denver, CO. I will receive the Ketamine IV treatments from an anesthesiologist who has a private practice. I have tried so many other interventions. I am having to take partial retirement this summer due to this condition. I may not be able to work at all ultimately. Are there any support groups for this condition?

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quazar | @quazar | May 21, 2023

I've been seen by several places on West Coast including Stanford, UCSF, and UW. My UW doctor was impressed and intimidated by all the big names, but I said, "None of them cured me, so I'm not all that impressed." LOL Medicine is a practice; it builds on itself. So, I try to temper my search for a cure with the search for better management skills and a balanced life. I may not be able to be pain free, but I can learn how to live the best life possible with the pain.

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