Broke collarbone in massive car accident (as well as other things).
Collarbone didn't heal on its own. Before concluding we'd waited long enough, that arm swelled up and turned BLUE. Like bluejeans blue.
Put collarbone back together with a plate and 8 screws. Arm turned pink again.
Few months later, started noticing transient blueness again. Quickly & easily clearing by moving it.
Month or two later, tried doorway stretch, arm goes numb in less than a minute.
Off to the doctors I go. This was now 13 months ago. Beginning of my trip into the twilight zone.
Blood pressure starts spiking for no good reason.
MRA shows blockage when arm is straight up (yes, talk to doc, have them do it in usual arm at side position, and then straight up over your head). Both artery and vein, very clearly blocked right under collarbone.

But local vascular surgeon says he DOESN'T BELIEVE the MRA, nor the testing showing my pulse disappears when arm is up or back. Sends me to anyone else.
Cardiologist says blood pressure spikes are from blockage when I move my arm the wrong way, causing feedback kicking the rest of my system into overdrive.
Neurologist says, it's definitely not neurological, it's vascular.
Physiatrist says, you need a better vascular dr, go to Yale.

Yale vascular doctor reviews records before my appointment, says I need to see the thoracic surgeon, not him. change appointment.
Thoracic guy says yup, vascular problem, take out rib and scalenes. I say what about scar tissue, I'm KNOWN, PROVEN to make massive keloids inside and out. Yale says wouldn't touch that, just take out rib & scalenes to make lots of room.
Panic at thought. Also, if it's scar tissue causing problem (I can feel I am bound up in shoulder area), doesn't it need fixing also?

blood pressure acting up again. more pills.

Go to Columbia/Presbyterian. Thoracic surgeon says yup, problem. Take out rib, scalenes, scar tissue, rebuild collarbone, install kitchen sink. WAIT! What's wrong with my collarbone, was it fixed wrong? No, we just do that, have a collarbone specialist.
Panic, now sounds like too much going to be done.

Find out about Mass General. Go there. Sounds hopeful. Until I find out about mistakes. And Dr. dumps me. (see post on kyounie's cervical rib thread).
Despair. Almost a year lost.

meanwhile, heart rate now spiking. back to cardiologist. more pills.
meanwhile, previous eye problem reappears (less than 1% have a recurrence). Then it gets worse. Ophthalmologist decides it's vertebral-basilar insufficiency/subclavian steal due to intermittent blockage in shoulder.
dizziness, eye, hearing, balance, all go kaput at times. oh goody. And I lsoe 4 months waiting for Mass. G., only to get dumped, while all this develops.

Go to NYU Langone Vascular Dept. Dr reviews my huge pile of tests & scans, & me. Says it IS scar tissue around artery and vein, as shown in CT scan done in Boston, as well as much other evidence. Says surgery would NOT be recommended, even tho he is a surgeon. Rib & collarbone spacing is fine. Scalenes are not the problem. Scar tissue from damage from accident is.

Says intensive PT with skilled, knowledgeable therapist (not just anyone) is the solution, get scar tissue to loosen up. Is what I have been telling them ALL since the accident, since before this problem got so bad. I can FEEL the scar tissue binding in there.

Finally get name and appointment with a really good PT (have been through so many in the last year and a half who did nothing but "cookbook" routines).

But she reads all my reports & doctor letters. Sees the vertebral-basilar insufficiency stuff. Now she is SCARED of that, of triggering something bad, so she won't touch my shoulder until she talks to a doctor who can give her more info!!!! (Is working on my back, knees, hips, etc that have all been waiting while this whole TOS mess has been happening.) Local doctor didn't manage to call her back yet (a week+ since I gave her the reports), told her probably better to call NYU doctor. Will find out this week if she's been able to get a hold of anyone.

So, I'm STILL waiting for something to happen with this shoulder.

Oh yeah, none of the MRI/MRA's and none but one of the CT scans could show the scar tissue because of the interference of the metal plate on my collarbone. Have been told normally they might, but only if there's enough to show up easily. An ultrasound tech said US wouldn't be able to show what was going on with the bloodvessels/scar tissue because the scar tissue would block the view. HELLO???? We're LOOKING for scar tissue.....so wouldn't having it block further view tell us something????

Quite frankly I think I'd have gotten just as good treatment from reading tea leaves and casting bones and maybe a ouija board. And now I hear the doctors have labelled me a "difficult" patient....