Mergirl - I was originally diagnosed by my chiropractor as TOS.
But - I was always skeptical because I never had issues at all until that one day when I went to the ER in so much pain. I would have thought I'd have issues throughout my adult years if I had TOS...or at least an 'incident'.
Did they remove your top rib?
Were your symptoms mainly on one side up your upper body? Did they resolve somewhat after the surgery?
I did have my left 1St rib removed 6 years ago. Nice 2 inch scar above my clavicle to prove it. That was another thing it took me years to get a diagnosis for and by the time I did, I was completely debilitated. It got so bad that the rib literally was hindering the movement of my neck to the left. Just could not turn my head.migraines and facial pain shoulder and arm pain 24/7. That's what put me out of work and stopped everything
Now this is really confusing and I know I'll probably never have an answer for this. I know I already had Lyme when I had the surgery. I had been told for years that I didn't have it. I went to over 12 neuros in my state who couldn't tell me what was going on and why I had so much pain. I could literally feel the bone bearing down on the blood vessels and nerves. There's different kinds of TOS. I had the neuro kind. Now I have neuro lyme too!
I started getting neck and shoulder tension and tightness and the severe headaches in my teens but it was more of an occasional thing. Shoulders were always tight. But as I got older it got worse and worse. But still didn't impact my life majorly until I was around 30. By that time I had already gotten sick the first time with Lyme or clinically diagnosed. And unbeknownst to me, not treated properly or long enough and told it was gone when I felt better.
I have no idea if the TOS was really Lyme or caused by it or maybe some of the neuro symptoms were Lyme and I had TOS as well. No idea. I thought the nightmare would be over when I had the surgery. I was given a year recovery time, had to go out of state for the surgery too. But in that year was when I realiZed the pain wasn't getting much better. Still had neck tightness and pain, eye and jaw pain, etc. Everything that I had blamed on the tos. And my knees started hurting. All hell broke lose pretty much .
The surgery helped my range of motion. Once the rib was gone I could turn my head again but there was so much pain in that area and cramps in my neck. I was so young and had a good surgeon, one of the best for it and couldn't figure out why I wasn't healing.
So if it was Lyme that means I've had it much earlier then I think. But I didn't actually get sick with the meningitis symptoms till my mid 20s and diagnosed the first time then.
In the years since the surgery I've been around and around to pain specialist, rheumos, neuros, chiros, etc. Not one said anything about
Lyme or ask and I didn't even make the connection myself.
I know now some of the pain after the surgery that first few years was Lyme. Llmd told me it will attack weakened nerves and tissues and it did. I'm actually feeling a little bit better in that area now for the first time since. And when I started abx I think I got a herx reaction in that area. Cramping and pain came back.
What was the pain like that sent you to the ER? Before I was diagnosed with TOS I was in there at least a couple tines a month and they could never ever figure out what was going on. I kept telling them if felt like a bone was pinching me or that my clavicle was broken but I knew it wasn't.
Sorry for the length. If I ever make it through this maybe I'll write a book someday of my medical misadventures. Lol