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NDPH: CSF Venous Fistula as Cause?
Hello All - I've posted here before about CSF leaks as a possible cause of my NDPH (New Daily Persistent Headache). A few years after the horrible CT Myelogram that gave me PTSD, I was able to try a blood patch. It did not make any difference in my pain. Since then, I've continued to try new things and wanted to share in case there's a treatment option you might not have heard about.
I recently moved to a new state. Prior to my move, my interventional anesthesiologist had suggested: an ultrasound-guided occipital nerve block, and Lidocaine and Ketamine infusions. We were not able to schedule those before the move, so they are still on the table.
My new neurologist said he had some success with the following combo: Memantine + Ubrelvy + Tizanidine + a boatload of supplements (ginger, B2, B12, Magnesium, and Boswellia). None of this had any impact on my pain, and at the highest dose (10mg/ twice daily), the Memantine made me dizzy.
Up next for me though is a Digital Subtraction Myelogram (DSM for short) to look for an atypical csf leak - one caused by a venous fistula. This is apparently a recent (2014) advancement in technology, and as is common in medicine, all new discoveries take time to be tested and communicated across the country and/or globe.
So first, I get to do yet another MRI so that the neurosurgeon performing the DSM will have an idea where to look. Then a week later, the 2-day outpatient DSM happens under general anesthesia. If they find a venous fistula csf leak, then the fix can be done without surgery. My doctor used words like catheter , femoral vein, Onyx cohesive, and embolization to describe the fix, but I couldn't tell what it all means. I just know that it's not surgery where they cut me open and maybe have to remove bones or deaden nerves to get to the venous fistula.
I found a super technical 2022 article that discusses these treatments: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9379705/
That article says:
"Current treatments for CSF venous fistulas include an epidural blood patch, percutaneous fibrin glue injection, and surgical fistula ligation. Recent case series also reported favorable results regarding the novel use of transvenous embolization of the paraspinal vein with Onyx in 5 patients with thoracic CSF venous fistulas."
So that article quote seems to cover all the words I didn't know and will need a medical dictionary to understand better. LOL
If you've been diagnosed with a CSF venous fistula, I would love to hear about your experience!
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Please let me know how the DSM went. I was supposed to get one but have not yet. Still have he headache 3 yrs/9 mos, every day, all day. Had 5 blood patches over the years. My new neurologist is holding off on the DSM for a bit trying other things. Keep me posted. I'll be praying for you.
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1 ReactionI have a diagnosis od NDPH. I have had a moderate to severe headache every day (all day long) for the past 9 months. I am having IV Ketamine treatment next day (4 infusions over 5 days). Has anyone had this treatment and was it helpful? Thanks for any help.
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1 ReactionOmg 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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1 ReactionI 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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I found a Facebook group, "NDPH Support Group", and it's helpful. People share about their treatments and experiences. People rant and lament. Rules of the group are typical - have to have an NDPH diagnosis and be respectful/ no bullying, etc.
So do the Ketamine infusions help? Those are next on my list to try, but if I have a CSF leak, it can be fixed. So I'm trying that first. If no cure, then I'll focus again on management. Have you checked for CSF leaks yet?
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.
I will look into the support group. Thank you for the information. I will start the ketamine infusions this week, so I will let you know when I have completed them. I have not heard about a CSF leak but plan to ask my neurologist. Thanks again. The
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1 ReactionThank you for your words of wisdom!
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1 ReactionWhy not try the Ketamine nose drops first. I understand IVs are brutal - 5 days in hospital with side effects.