[farmgal]

Just wanted to introduce myself and possibly get some support/advice from the knowledgeable folks here. I was diagnosed with TOS back in 2005 so I've been lurking here for several years but have never posted before. I've done the Dr shuffle like most of you (started with chiro, then ortho & PT, neuro and now back to ortho again) and I'm getting so frustrated by the lack of knowledge in the medical community. Also frustrated by the fact this condition is likely to force me to find another vocation and means of supporting myself (I've been a software developer for the past 16 years).

Here's my situation. After at least a year of constant neck & shoulder pain and attempts to treat with chiropractic adjustments, I finally went to see an ortho in early 2005 and had a cervical MRI. The MRI showed disc bulges around c5/c6 along with some small bone spurs. This particular doc didn't think the disc bulges & bone spurs were enough to produce the symptoms I was experiencing (pain in neck & under collarbone, felt like butcher knife was lodged between my right shoulder blade & spine, daily tension headaches which were also on the right side, tingling & numbness down right arm and right hand would sometimes feel cold to the touch). He prescribed Mobic & Flexeril but I'm not a big pill person so I resisted initially. Finally, I couldn't take the pain anymore and tried the meds. Mobic didn't seem to do much but the Flexeril definitely helped the muscle spasms. This was my first clue that the problem seemed more muscular in origin.

This ortho also prescribed physical therapy so I tried about three different rounds of this before going back to see him. Some of the therapies helped, like the heat, massage and stretching. Other parts of PT seemed to hurt more than they helped . . . like the strength exercises and the electro-stim (seemed to aggrevate my already touchy nerves). I had also been researching my symptoms on the internet and came across some TOS sites. I mentioned TOS to the ortho at my next appointment and he agreed the symptoms were a good match but this was out of his league. He referred me to Dr. Meyer @ UAB and after waiting several months for an appointment, Dr Meyer diagnosed me w/TOS in late 2005. He basically told me to 'suck it up as long as I can' before considering surgery.

So after 'sucking it up' for a couple of years . . . just taking hot baths and the occasional muscle relaxer to cope, I started getting migraines at least twice a month. So I went to see a neuro that was a headache specialist and told him about the TOS diagnosis. I felt the migraines were related since they were always right sided as was my TOS. The headaches always started in the occiptial area and ended up feeling like someone was squeezing the back side of my right eyeball. After having this headache for several days, it would eventually turn into a full-blown migraine with auras and vomiting. Neuro thought with better pain control for the TOS that maybe the migraines could be reduced. So I walked out with scripts for Phrenelin Forte (for the daily headaches), Flexeril (for muscle spasms) and Imitrex spray (for the migraines). This combo worked well but the Flexeril made me so sleepy I couldn't take it during the day. I could take the Phrenelin without passing out but it was basically a barbituate/tylenol/caffiene combo and I worried about becoming too dependant if I took it daily.

So maybe a year later, I asked neuro doc if I could try something that would address more of the overall TOS pain and not just the headaches. So he swapped the Phrenelin for Tramadol which worked like a dream for another year or so which brings us almost to present day. About 2 months ago I started on a new project which has been extremely stressful. I think the extra stress has just pushed my TOS pain over the top. I started seeing a chiro again and getting massages every two weeks. The chiro also does trigger point injections so I've had many of those in the occipital, scalene, and rib area. I must say that I'm not a fan of needles, but these injections were like heaven . . . about 2 hrs of pure bliss and no pain. It was kind of shocking to remember what 'normal' feels like but it was a very temporary fix.

So here I am today, going back to the original ortho for a new MRI . . . hoping maybe the discs or bone spurs have gotten worse. Maybe that could explain the increased pain but my gut tells me it's the TOS. I have an appt with him on Monday to review the new MRI but the xray he took in his office last week (where my right collarbone was about 1 inch lower than the left) spoke volumes. I'm petrified about surgery . . . I don't really feel that any of the docs I've seen know enough about the condition to be removing my scalene muscle or chopping off my top rib. But I also can't keep scarfing down pain meds for the rest of my life . . . I'm only 36 but feel like I don't have any good options right now.

Anyway, that's pretty much the end of my story so if you made it this far you're a real trooper. Any advice, encouragement, Dr recommendations in the southeast US would be greatly appreciated. Thanks so much for listening.