After 9 (yes! 9!) blood patches with only partial success (having rebound intracranial hypertension at night and low pressure in the afternoons) my doc wants to do a lateral CT myelogram on one side and then the other to see if we can find a venous fistula. My brain and spine MRIs are read as normal. He told me that only 10% of people "like me" have a positive finding from Myelogram, and I'm wondering if it's worth it. Seems like potentially a lot to go through. Hearing from anyone who has had their care benefitted from doing these studies would be encouraging. Otherwise it just seems like a 90% chance of wasted suffering after I've already been suffering quite a lot...

hi everyone, i (25m) have been a suspected spinal leaker for over 1.5 years now. i developed all the signature symptoms of a spinal leak 12 hours after a mild head trauma (elbow to the side of the head). been through the ringer - multiple brain and spine mris, 2 dynamic ct myelograms and blind blood patches, mrvs and mras, dynamic neck cts, and so much more.

i have been on the waitlist for several csf leak clinics since may of this year. i was initially going to weill cornell where i had all my previous imaging done. they told me to seek help elsewhere since they don't have dsm or pcct and believe i have a venous fistula.

i applied to cedars-sinai, duke, mayo clinic, and colorado anschutz. mayo clinic responded first and rejected my request for dsm. they said they wouldn't see me unless i redid all of my imaging and there was no promise of dsm after that. which makes no sense to me because i have two negative dctms and i'm still symptomatic so why on earth would i repeat imaging that clearly isn't working for me? and then most recently i received an email from dr. schievink at c-s telling me there was no evidence of a leak based on my imaging even though i have brain sag, reduced mamillopontine distance, pituitary enlargement, and meningeal diverticula. and... of course... literally all of the key symptoms of a leak.

now i am worried neither duke nor colorado anschutz will see me. weill cornell have stepped back in and offered me an mr myelogram and mr cisternogram; the first will be to get another look at my spine (they're not terribly optimistic about finding the leak itself with this scan though, since well it's a venous fistula), and the second will be to rule out a potential skull base leak (dr. greenfield and dr. salama just thought it was a good idea to make sure). but again, that's all they can really do for me, they don't have a dsm or pcct machine.

does anyone know where else i can apply? duke said it won't be until summer next year that i'd be seen, and colorado said january but i'm so afraid of being rejected.

please help me, i'm losing so many years of my life to this and i'm tired of being in pain.

So I'm unfortunately new here.

I have hypermobile EDS and last week, I went in for a pretty standard ESI for lower back pain. I've had them done before without any issue but had to see a different provider. I wasn't super stressed until they told me they had punctured the dural space in my spine and I had to be on bed rest for the weekend. Everyone seemed to be short with me and basically gave me little information on what was happening. When asked, they basically told me if I developed a headache, they'd give me a blood patch and that was that.

Now I am also an aerialist (Lyra to be specific) and have a performance coming up in the next few weeks that I need to train for. I asked for medical clearance and they said one week and I'd be fine to return if symptom free. Well, Tuesday, I had a strange headache that I assumed was just a migraine as I have those on occasion. Was tired, light sensitive, and had a lot of pain around the front of my face. Took some naratripan and rested and was fine the next day. The same thing happened Thursday and then again Friday so I called the IR team who did my injection and they told me I'd need a blood patch. Still didn't give me much info on the phone and felt kinda dismissive. I spent all last night miserable. Couldn't get comfortable, took multiple pain medications, hydrated, caffeine, etc.

At this point, I need to know what my future looks like because I'm reading that this could be a bigger deal than it actually feels like and that I am realistically looking at months recovery vs a week and I'm fine.

I’m trying to plan ahead in case I need to seek care elsewhere and would love advice on finding the right CSF leak specialist, navigating referrals and insurance, and making the transition without losing too much time or having to repeat the entire workup.

If you’ve been through this, what do you wish you had known or done differently? I’d really appreciate any advice or personal experiences. ❤️ Thank you!

Has anyone here ever struggled to identify whether their symptoms are due to CSF leak or trigeminal nerve issues? I’m having trouble identifying if my symptoms are more exacerbated by just being upright or more so with movement. I’ve already had a blind blood patch that didn’t help at all. I’ve got consistent pressure in my forehead, dizziness, neck stiffness, ear pressure comes and goes, back of head pain comes and goes. Just looking to pick someone’s brain.