Hang in there, I hope they can patch your leak!
I was initially thought to just be suffering from POTS by some pretty well respected docs at Cleveland Clinic, but there were some outlying symptoms that just didn't add up. Ended up getting to see Dr. Carroll at Stanford and Dr. Wouter Schievink at Cedars-Sinai and they were able to visualize a leak, still in the process of trying to get blood/glue injections to work until I get through TOS surgery. After that it may end up coming to surgery for CSF as well.
Also, I hate to sound pessimistic but just want to try to give advice - from what I've heard anecdotally, TOS will slowly progress, especially in those with EDS. The younger you have surgery, the better the outcome as well. I tried to stick it out with some pretty seriously targeted physical therapy and bracing until I was 20 but shit just kinda hit the fan and I've had to opt for surgery.
There are 5-10 surgeons in the U.S. that are at the point of having really great outcomes, most notably Dr. Dean Donahue at MGH. I waited like 9 months to initially consult with him. As much as I loathe Facebook, here are some great groups with regards to knowledge of good surgeons if you ever decide to pursue that route. A bad surgeon for TOS is definitely a bit of a death sentence.
https://m.facebook.com/groups/15231937182
https://m.facebook.com/groups/205345126171314
P.S., apparently there's been a good amount of POTS cases induced by COVID-19 and not responding well to treatment. Doctor at Cleveland Clinic mentioned it to me, said they were a bit dumbfounded. Will definitely be interesting to see how things play out long-term, will hopefully end up giving POTS some more awareness it deserves. Also, I have great hope in Neuralink for EDS pain in the future. Hopefully.
I've been seen at Stanford by Dr. Jaradeh in autonomic neurology, who found delayed orthostatic hypotension with sparing of the parasympathetics, caused by mild to moderate dysautonomia (the drop in blood pressure gives me orthostatic tachycardia; strictly speaking, this isn't POTS, which has no drop in blood pressure). I've got GI symptoms as well, plus widespread muscle tenderness, pain (and lately, burning sensation) to go with it (mostly in my calves and hips, but even in weird places like my jaw muscles). There seems to be no inflammatory cause, though, since rheumatological and inflammatory neuropathy workup has been strictly negative.
Now, I've never been diagnosed with EDS, although I am tall and thin enough to classify as borderline marfanoid habitus (I'm a couple inches longer in my arm span than my height.)
I'm pretty much at my wits end with what could be causing the POTS, though. As of now I am presuming it to be instigated by chronic pain radiating from the chest to the spine.
The really troublesome thing is my "TOS" doesn't really seem to be TOS at all, because although it continues to cause me great pain in the thoracic outlet area and pec, none of the diagnostic criteria for TOS show up when I do provocative tests like raising my arm. Instead I've been diagnosed by pain management as having intercostal neuralgia of the first rib and possible costochondritis. I can push my finger below my clavicle where it meets my sternum and elicit a lot of pain, which radiates to my pec. Earlier this summer I had a diagnostic nerve block in the intercostal area of the first rib, and it killed the pain locally (my neck and shoulder are still in a lot of pain).
As of now I am hoping a procedure I have scheduled to zap the first rib area will numb the pain long enough to do some kind of physical therapy consistent with what TOS patients do. The procedure is shy of RF ablation of the intercostal nerve, and is instead what's called pulsed RF neuromodulation, which doesn't quite melt the nerve, but is meant to interfere with the pain signals (much like TENS).
I've read in the literature that POTS has been seen in TOS patients. What's frustrating to me is that I am in about as much pain, but because as far as I can tell it's not actually TOS, I either don't need or don't want something like surgery. And yet here I am years later, having reassured myself that surgery wouldn't be indicated, but wound up with autonomic dysfunction / POTS anyway. In a way I regret simply not pursuing pain management earlier, and yet costocondritis isn't supposed to last this long from what I've read.
(I have never been referred to a TOS surgeon for evaluation, but I think about four doctors by now have had me do the provocative TOS measures, with negative results of course. A part of me thinks I should just self-refer anyway and have them at least do a TOS ultrasound to see what's going on.)