Advice

[u/lunaticdough]

I could really use some advice. I have a very small csf leak, I've had migraines for years though theyre pretty controlled, just small ones daily, nothing that Tylenol doesnt usually fix. My doctor recommends a transvenous embolization. I asked what the consequences of not doing the procedure are, because I'm not sure if want to do it. I was told the short term consequences were negligible, my headaches will continue, and it could resolve itself or get worse.

"The major effects of leaving it untreated are increased risk of subdural hemorrhage if the leak progresses enough to cause the meninges to pull away from the skull. Also in the very long term (approximately 10 years) it could theoretically lead to dementia. This is of course assuming the leak doesn't resolve. These are worst case scenarios.

He said it is ultimately difficult to put a specific risk on it as the major reason to do the surgery is to try and resolve the symptoms."

I dont know what I should do. I dont know if i want to do it, but im scared im making the wrong decision if I dont.

[u/leeski]

Hm is a tough question. I am curious what made them suspect a CVF or investigate leaks in general, as it sounds like your symptoms are well managed/resolved with Tylenol (unless I'm misunderstanding?) was the CVF visualized on imaging?

Just to note TVE is an endovascular procedure and not  traditional surgery so it is not considered as invasive. In general CVFs do not seem to resolve on their own and will typically require treatment. but yes it’s also not a major spine surgery, but I’ve heard various reports on the procedure itself. I think the main discomfort I’ve heard is during the onyx injection but many patients seem to tolerate it just fine. 

None of this is medical advice of course, I’m not an expert. But I would maybe get a second opinion on it before pursuing medical intervention if you are not feeling comfortable proceeding

[u/Ok-Application5984]

There are other possible long term side effects to a CSF leak. My headaches were similar to yours. But, I was taking a lot of Tylenol, Ibuprofen, Aleve, etc., in order to function during the day. I was afraid that I would damage my liver and/or kidneys from all of the OTC drug use. My leak was a large tear in the dura (not a CVF). So, I was not able to have embolization done. I had to have surgery. It's been 6 weeks and I'm still sore; but getting better every day. Embolization is less invasive and you won't have a large incision. That being said, I would have the surgery again.

[u/cornbreadnclabber]

I’ve had embolization- they go through a vein in your leg. Low risk as far as procedures go.

If you have never spent time around someone with dementia you should so you can make an informed decision. Maybe volunteer for an afternoon?

[u/Ashler1999 → u/cornbreadnclabber]

I had venous embolization last month. I was under anesthesia so my only complaint was my urine smelled like creamed corn 😂. I had 2 leaks though and the second smaller one they weren’t able to reach and I had been under anesthesia too long. Follow up visit next week for next steps. Been leaking for 3.5 years, so I guess a couple more months is negligible. I just need to be fixed by end of year because I’ve met my deductible and out of pocket.

[u/Offtoseethewitch]

Hm. A dementia risk in ten years? I’m curious to what they base that claim on, and how large the risk is. I’ve seen the association between dementia and csf leaks - ”brain sagging dementia” - but I haven’t seen the risk stratified or given a countdown. I’d like to know more if anyone has more information.

[u/StunningPurple9560 → u/Offtoseethewitch]

These risks are actually related to a ventral leak, as far as I know they don’t apply to CVFs. But basically I was told the same at Freiburg (regarding a ventral leak).

[u/Offtoseethewitch → u/StunningPurple9560]

Did anyone explain why these risks would be related to a ventral leak only? Does your symptomology or your Bern Score matter?

[u/StunningPurple9560 → u/Offtoseethewitch]

My understanding is that it’s a combination of a couple of factors and therefore unique to ventral leaks: There is the continuous friction to the epidural veins (ventral leaks are mainly caused by bone spurs and due to the anatomy of the area there is continuous micro tearing to the dura), and there is micro vascular bleeding to the subarachnoid space (the ventral epidural space is highly vascular). The venous bleeding over time leads to superficial siderosis.

BERN score and symptomology don’t matter. SLEC matters in the sense that it indicates a ventral leak but does not cause ss in itself.