Thank you for your input!
I have only had a cervical MRI because when I first presented with bilateral acute onset numbness/tingling (on vacation in Hawaii of course), they were worried about central canal stenosis. The scan only showed small bulges between C5/6 and C6/7. At the time they said my scan "didn't match my symptoms" and sent me home on prednisone, gabapentin, norco and a referal to a neurologist to rule out MS. The symptoms went away within 24 hours almost completely on the prednisone. By the time I got in with a neurologist at home, I had been on 10 days of prednisone and the symptoms had not returned. He looked at my cervical scan and said there were no lesions so I didn't have MS and the "sometimes weird things just happen to your body for no reason speech." Needless to say, I was not very fond of him.
Then, 10 days later, symptoms came back with full force and it has now been 3 months since then with basically no change. My PT is actually who suggested the diagnosis of TOS. My primary care NP agreed and here I am. Im going to see a pain specialist the first week of May who works at the Neurospine Institute in my town. Just not sure if I should go out of state (and insurance network) to go see a real specialist in TOS. I saw a clinic at UC Davis but that is about a 9 hour drive from us.
I have pretty consistant numbness in my right thumb, general weakness of both arms, and I describe it as a low voltage electricity running through both arms at all times. In the evenings, my right hand sometimes feels "dead", like really the tissue is dying. My hands are often cold but also frequently my hands are swollen and feel tight. It is incredibly difficult for me to write and typing is also hard. I barely work anymore and I am terrified of surgery. I have read so many stories of post ops that have found such minimal relief and since mine is bilateral, I just can't imagine having both done if the success rate isn't high. I'm still learning things so all of this may seem silly to you guys. I just want to push a button and have it be gone. I have a 1 year old and a 4 year old and I just push through when I have to but it makes for very painful evenings and the feeling that I have to knock myself out at night to not wake up in excrusiating pain I can't do anything about. It is so frustrating and isolating as I am sure you all know.
I go to my accupuncturist weekly but she recently has been doing myofacial release on me and it is the only thing in the last 3 months that has even made a little bit of a difference. Some people say keep moving, keep moving, some people say rest, rest. I just got a copy of the Edgelow Therapy and will take a look at that but with 2 little kids I can't commit to 4-6 hours a day of therapy...that's a full time job! But, on the other hand, I feel like I am failing them so maybe that is just what it will take.
Thanks for reading my ramblings. I appreciate all your input. Know any specialists in Oregon?!