In october 2015 my husband began having problems with his right arm. He had pain off and on and one day while working(Cracker Barrel Grill cook, lots of overhead reaching and repetition) his arm turned really red with lots of pain and pressure. I took him home and overnight he had a bulge appear in his upper arm and the next day we went to the doctor. He was diagnosed with a Blood Clot in his subclavian-axillary vein which they gave him a $700 shot to break it up. He was told to keep his arm elevated, so for the entire weekend he did just that(which was a terrible idea) and had no relief. He was referred to a specialist at because the doctor had no idea why he would have this clot form and how irregular it is. The specialist told us that she knew he had thoracic outlet syndrome and only sees it about 4 times a year, very rare. She was going to refer him to a surgeon for TOS, but he did not have insurance at the time which made things very difficult. For 6 months we waited to find someone that would/could see him. After calling many different hospitals to no avail, we finally got in touch with Barnes-Jewish Hospital in St. Louis. One of Dr. Thompson's team members, Dr. Vermeri, is who we saw and he was great. From day one he knew the answers to all our questions and we were scheduled for surgery in April.

By now my husband(boyfriend at the time) had been out of work for some time and qualified for Illinois medicaid. After many phone calls we finally got them to approve the surgery and 90 days of treatment through Dr. Vermeri under continuity of care. And once the surgery was performed, the insurance really had no choice but to approve all follow ups pertaining to the surgery.

He had surgery to remove his first rib on the right side along with 3 scalene muscles and while it was no fun, it is exactly what everyone else describes. lots of medication, lots of pain, lots of waiting. for all follow-ups, his recovery seemed to be going well. His initial problems subsided but he still experienced pain in the surgical area which was to be expected.

Where we ran into problems was with insurance and physical therapy. At first, the insurance and approved physical therapy, and then went back and forth trying to get out of it. Basically, he was able to receive the therapy from a local hospital at first 2-3 times a week for just a few weeks, then insurance said they wouldn't pay anymore, although he really needed somewhere close to 6 months of therapy. Every time he would start to slightly improve, the therapists were fighting our insurance again. So after a few weeks, he wouldn't have therapy for 2-3 weeks, then he would for a week, and then not again. So when he would go back, he had regressed each time and it was like starting over because he was unable to get continuous treatment. He hadn't even gotten to the point where he could lift a gallon of milk above his head and the therapy stopped completely.

Our biggest fear, as it had been explained to us, was that the physical therapy is the most crucial part of this process. After surgery, as the scar tissue is forming, the therapy helps it to form loosely so that it is not restricting his movement or ability to use that arm. Also, if this does not happen, the scar tissue can form tight as it fills up the room that was created during surgery and could potentially cause the same TOS symptoms he experienced before surgery. For over a year he was out of work and when he finally returned he was extremely limited to light duty with a maximum of 4 hour shifts only a couple days a week. After a few months, this was shown to be too much for him as he began to have similar pain in his left arm due to overcompensation. When this began, we were both scared of having this occur in the other side, so he went on leave and eventually found other work that wasn't as demanding on him physically with no overhead repetition or lifting. He was still limited to 25 hours a week and short shifts because anything for too long was too much for the right arm. It is very weak and still has pain most days.

Now it has been almost 2 years since surgery and he has been in a lot of pain with that same right arm. He describes the pain to be just like it was before surgery, which is very different from the surgical pain he has experienced since. He feels that he may have another blood clot. We now live in Lexington, KY and have a doctor appt. for friday with a new Primary Care Physician. We are hoping she will be able to refer us to a specialist but fear there are no doctors anywhere nearby that will be experienced with this problem. Although it is far away, I would prefer to go back to Barnes-Jewish Hospital, but also fear the insurance will not cover it this time. And Dr. Vermeri is no longer with them, as he relocated.

Im really glad i found this forum because it does give us hope that there are others out there that understand this struggle. If anyone has insight on doctors, similar experiences, or recurrence, Please feel free to share! Just as before, we are just going through the motions with no real expectations. With such a rare problem, it is so hard to find helpful information. Thanks for reading our story.