Hello,

I am a 33 year old male in SF Bay Area, who has been suffering from ongoing chronic pain in my neck, chest, pectoralis, and shoulder. I have been unsuccessful so far in getting the tender and tight muscles in my neck from relaxing, and have now been gradually developing worsening dysautonomia. I was diagnosed with orthostatic hypotension causing mild to moderate POTS last year at Stanford by Dr. Jaradeh, who runs the autonomic disorders program there. Recently my standing blood pressure has been dropping as low as 65/45. (My sitting blood pressure has always been around 115/75.)

It all started 5 years ago, in 2016. I had been performing a great deal of upper body calisthenics--more than I'd ever attempted in my life. Everything was fine, until one night my pec minor muscle seemed to seize up extraordinarily. I woke up in a fetal position, unable to lift my right arm, like it was locked solid.

Over the next 4 months, I regained the ability to lift my arm up. However, in the process (and perhaps due to the misguided insistence of my PT that I try to do wall push-ups and straighten out my shoulder by strengthening my scapula), my neck muscles now became incredibly tight as well. So at this point, although my pec was no longer locked up, I now had terribly tight and tender scalene muscles and upper trapezius, as well as painful muscle tissue all along and underneath my right collar bone, from the AC joint to the SC joint, and along the subclavius. In fact, the SC joint area and the thoracic outlet is by far the most painful and tender.

Fast forward 5 years, and over time I've accumulated symptoms of IBS, then dysautonomia in the form of brain fog and orthostatic hypotension. I also have muscle pain in my calves that makes standing painful. Through extensive labwork, we've ruled out any kind of pathogen or B-vitamin deficiency. What seems to remain is the possibility of TOS, or some related syndrome of neck and chest wall pain, going basically from the pec minor, through the thoracic outlet, and up the scalene and upper trapezius.

However! In all of this, I've been seen at Stanford Pain Management, Sports Medicine, and the Autonomic Disorders program, as well as by a neurologist at Palo Alto Medical Foundation. BUT, every time I mention to a GP, sports medicine doctor, or pain management specialist, I always am asked to do things like raise my hands above my head and put my fingers together, or otherwise test for weakness or numbness. It seems that every time, I am being tested for positive signs of TOS, but because my arm has pretty good function and don't have symptoms going down it, my terribly sore and tender scalenes go completely untreated. I don't know who to turn to, or if a vascular surgeon would even consider my case, since I don't seem to have TOS on paper. Every second though, I have terrible pain in my neck and chest, which and general dysfunction in my shoulder and scapula. Attempting to do a push-up reveals how badly imbalanced things are, and I get terrible pain in my neck and subclavius when I try.

At this point, I am basically wondering... should I go to a vascular surgeon, in hopes that they'll diagnose me with TOS somehow? I have hope that something like Botox injections could break this cycle and make PT possible (I've tried PT 3 separate times, each time with no real lasting results, although when the therapist gently massaged my upper thoracic and neck area to try to release the trapezius muscles, there was some partial relief for a few minutes).

So far, the neurologist at PAMF laughed at me when I suggested that Botox could be used to relax my upper trapezius muscles. And yet I've read there are clinical studies from UCLA showing the efficacy of Botox for people with neck pain. I am tempted to try and schedule appointments at UCSF or even fly down to UCLA to see if that might help. However, I am concerned that unless I am seen by a doctor who is willing to diagnose my condition as nTOS, I will not receive injections in the right places (like the scalene, pectoralis, and subclavius muscles). The dilemma is that I am unsure how who to even talk to about getting to a TOS doctor. Should I just book a flight and see one at Johns Hopkins, where I've read that Botox has been successfully used on TOS patients? Or Mass General, with Dr. Donahue?

Thanks for reading, and I apologize for the long message.