Quote:
Originally Posted by RachelSM
I have POTS and had bilateral arterial thoracic outlet syndrome. Having surgery two years ago to relive the thoracic outlet syndrom definitely helped my POTS symptoms significantly (I'm not bedridden anymore and am not dizzy when I turn my head) but has not resolved them. My stomach issues improved greatly as well, along with brain fog. I recommend Dr. David Whitley, a vascular surgeon in Birmingham, AL. He used ultrasound and other means to diagnose me and was able to tell that my subclavian arteries were 100% compressed depending on the position of my arms. While he did not suspect a link between POTS and TOS, I found that relieving the TOS helped my POTS symptoms. It definitely helped me regain some quality of life. My mother had the same surgery for her arterial TOS (she only had it on one side). Dr. Whitley had recommended PT to us first, but it did not help us due to it being the rare arterial form of TOS.
I pray you find relief!
I regularly see a orthospinologist chiropractor who helps me with residual symptoms of TOS, as I have frequent joint subluxations which can cause a recurrence of symptoms on a much smaller, less-debilitating scale. I highly recommend this orthospinology technique, which is safe for TOS. If you have TOS, you should never let a chiropractor manually adjust your neck.
|
Thank you, Rachel! I am sorry to hear what you've been through, and am glad to hear that the surgery provided some improvement.
It is quite interesting to hear that you experienced POTS and TOS together. I myself am somewhat skeptical of the link, but there doesn't seem to be any other explanation of it.
I have in fact scheduled a consultation with Dr. Donahue at Mass General, and will be getting Botox and a CT scan this December. So presumably if there is indeed arterial compression it will show up on the scan.
In my case, the symptoms do not seem to vary based on my arm position. The progression has been gradual and steady, starting with muscle pain in my calves, and now POTS, OH, and finally brain fog, over time these past 5 years. If it's as simple as arterial compression, I would be quite happy to get relief from surgery, of course.
On the other hand, I have to wonder if this is somehow a neuropathy triggered by the TOS. I have been referred to a general neurologist at UCSF, and plan to ask them about what kind of imaging or other diagnostics we could do to look for a neuropathic explanation. The fact that I have OH and also general muscle and calf pain makes me wonder if a skin punch biopsy to look for small fiber neuropathy is in order.