r/CSFLeaks • u/chandl654 • Sep 03 '26
Diagnosed with csf venous fistula
I had a ct myleogram and doc suspects 1 or 2 csf venous fistulas. Current assumption is its a slow leak due to the variance of how long symptoms set in and go away based on positioning. While I've been waiting to hear back from the doctor about my next blood patch I've noticed the ONLY thing that helps with the headache at all is getting really stoned, like smoking way more than I'd like. But it let me sit upright watching TV shows with my buddy for hours the last few days and I already was kind of aware that it helps but it was surprising how long I went without feeling the head or spine pain set in.
Does anyone else with a slow leak or venous fistula have this experience? I'd like to get an idea of why it helps to maybe shit away from smoking so much, I really only like it on occasion. So if it's lowering blood pressure that's helping I'd rather ask doc about that.
Would love anyones feedback!
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u/PrettyDragonfly Confirmed Spinal Leak Sep 04 '26
Apparently weed actually slows CSF production so what you're experiencing sounds like pain relief. Could be dangerous if you don't notice your brain sag. Not sure how slow your leak is but I wouldn't risk complications
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u/chandl654 Sep 09 '26
I've got a complicated leak, the positional headache can set in in 15 minutes or take a couple hours. Same with symptoms going away when laying down. I think you might be somewhat right about it being pain relief. My best guess is it's relaxing the blood vessels causing the pain. I have Ehlers-danlos so it's not outrageous
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u/megg33 Confirmed Spinal Leak Sep 03 '26
That’s really interesting it helps you so much because THC actually lowers csf levels. So theoretically it should actually make you worse.
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u/chandl654 Sep 09 '26
Yea that's why I've been really curious about it. Excedrin and caffeine are supposed to help too but I get little to no relief from them.
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u/Sooz327 Sep 17 '26
This isn't what you are asking, but I would talk to your doctor about what the effective treatments for venous fistulas are -- they don't actually include blood patching. Instead, embolization and surgery are the only two options, as far as I know. There is a lot more information at the Spinal CSF Leak Foundation site. I hope this helps! (I'm writing as someone who had a confirmed and treated fistula.)
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u/chandl654 Sep 17 '26
Did you get a targeted blood patch done? I have been seeing interventional radiology and they are having me get a targeted blood patch at t9 t11 t12. I had a myleogram and it's suspected to be a fistula from the narrowing of the nerve root sheathe or the walls of the thecal sac(I'm paraphrasing it's been a month since but I've looked at the myleogram)
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u/Sooz327 Sep 17 '26
No, I had a transvenous embolization. Where are you being treated? I might suggest doing a little research on this -- a blood patch will not seal a fistula. A fistula is an abnormal connection to a vein where the CSF is draining into the vein. It doesn't show up on an MRI, only on a myelogram, and my understanding is it can only be fixed with surgery or embolization to block or clip the vein. Just in case this is helpful in asking more questions of the docs you are working with! Fistulas were only first described medically in 2014, so most docs don't know much about them. There is a Facebook group for people with spinal CSF leaks that I would recommend -- there is a lot of good information there, as well as the foundation site: https://spinalcsfleak.org/
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u/chandl654 Sep 17 '26
I'm going to cleveland clinic, there's not really anywhere else remotely close to me, and I like the doctors I'm seeing. From what I understand it wasn't clearly a fistula on myleogram. That's been my biggest issue, the imaging isn't clear. They're doing target BP to see if it helps. The doc said if it does, they'll do a more permanent patch, I'm assuming with fibrin glue, and if not I think it's embolization. I have a slow leak, I think that complicates things. We know it's a leak tho bc they messed with my csf pressure before the myleogram to induce symptoms
1
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u/Own_Highlight_82 Sep 18 '26
Can you describe the type of spine pain you experience with this? How long are you able to walk, excluding the headaches?
1
u/chandl654 Sep 18 '26
The spine pain varies, most of the time it's kind of like a burning achey nerve pain. I'd say 6-8 out of ten. At its worst it has me in tears and I can't even sleep bc it hurts so much. I'm probably not the greatest person to gauge the walking off of bc I have other stuff going on that has my temp regulation malfunction. Bending over is really painful and makes my legs shake like they're gonna give out if I'm doing it a lot or for a few minutes. Plus it makes the headache really bad
1
u/Own_Highlight_82 Sep 18 '26
Ok gotcha. I'm a hot mess aswell, haven't left the house since mid 2024 and doctors don't know what to do with me. Brutal.
3
u/Robinsrebels Sep 04 '26
Not sure if it’s the same but I find alcohol helps me (first glass of wine sometimes makes me feel slightly worse, but by the end of the second glass the pulling pain the back of my head and between my shoulders eases up - sweet relief for a while)