BIG car accident, broken right collarbone, sternum, left 8th rib, etc (seatbelt path, even with airbag). Collarbone didn't heal, fixed with plate and 8 screws at 3-1/2 months after accident. Few months later, vascular symptoms appearing in right arm. Big surprise, I make keloids inside & out. Have spent over six months just trying to find a competent doctor (local yokels are idiots. Head of vascular surgery at local hospital said he didn't believe a very clear MRA showing both artery and vein blockage because I didn't have clots. Therefore I didn't have a vascular problem. Told me to go away. sigh.)

When I "trigger" the arm blockage by moving wrong, it can cause my blood pressure and pulse to go way way up. Danger zone, sometimes. Cardiologist has increased bp medicine. Sometimes, when I overdo it, even my right eye gets the "grey curtain" effect across it (ophthalmologist confirms that's what it is). Then I sit very quiet, waiting for all to calm down, haven't gotten to point of calling 911, yet.

Still have swollen lump area (soft tissue) at base of neck. Neck-end of collarbone/sternum area is sore, "stuck" with scar tissue I can feel is there (and recent CT scan seems to confirm, tho plate in collarbone is interfering with good pictures). When I move my shoulder up or forward, lump and stuck spot end up feeling like someone's fist is knuckling into my neck.

Last couple weeks, sometimes even when not moving feeling like a rock is pressing into my neck. Couple of days has felt like someone's hands are around the base of my neck, squeezing. More often, now, strange, unpleasant feeling in my lower neck, kinda alongside windpipe, don't know how to describe it--tickling/tingling is too gentle, not twitching as this is more constant, buzzing but not a buzz, just constant like that. I just want to rub or grab and pull my neck/muscles to make it stop. Feels also like a fullness or pressure, but without pushing inward. Like I said, I don't know how to describe it exactly, but it's really unpleasant and as it becomes more constant, it is REALLY getting to me.

Seems to coincide with high pulse rate (to 100 or more), but not necessarily always so (or else things change by the time I bother to go get the bp machine).

Does anyone know what this might be? Or how I better describe it to a doctor? Haven't gone yet, I go too much with too many problems (it was a big accident. Lots of stuff still going on. Much they haven't even bothered to address yet.) Did have a thyroid check (bloodwork, exam) with an endocrinologist in January as ophthalmologist checking eyes saw cause for concern, but endocrinologist said all was fine.

This weird uncomfortable neck thing is just really getting to me now.

Although I'm not sure how you can better describe your symptoms- as I feel that you have been plenty descriptive enough here in your post, I can say that I do hope that you're able to be seen by a DR who knows how to investigate further. Pls try to get a second opinion from another Vascular DR. I too, know how it feels to see someone whom is "highly rated" or the director of the vascular Dept- I almost began to wonder if you're from AZ!! I saw the highly rated vascular surgeon here at UMC/UofA and he turned me away with a possible "allergic reaction to lotion" and it was "100% not a vascular issue" when my left arm/hand swells and turns red- because I have never been DX'd with a clot nor did I have one at that point. REALLY.

Anyway, fast forward to new DR- have arterial TOS and I have surgery scheduled for next week. Amazing.

it took me to narrow down my symptoms according to the particular specialist I was seeing. I would pretty much make two lists, one highlighting my symptoms according to the specialist (neuo symptoms for neuro, vascular symptoms for vascular Dr, ect.) and then a second list with all other symptoms. IF you find a DR willing to listen and PAY attention to your first list, then hit them with the second list.

Also, maybe look into internal medicine? They have a whole/total patient concept- might work for you. Sometimes, DRs are too close to the forest to see the trees, keep looking for other opinions- you will find the answers that you're looking for.

Don't hesitate to go to the Dr/hospital ASAP though, when your symptoms are getting out of control/out of the norm. You may be playing with fire. Also, not that I advocate patients going to the ER- but that right there could be the key to getting an appropriate work up right away! Bear in mind, you will get poked and prodded and tested up the wazooo- but who here hasn't anyway! With your symptoms, you are almost 100% sure to get a substantial ER workup!!

Chin up, we are here for you!!

Have been to Yale New Haven, have been to Columbia Presbyterian, both said would chop out rib, after looking at me, MRA, and cheap quality x-ray taken to check that screws & plate in collarbone are still tight, for about 5 minutes. Neither was very comforting, tho both were nice.

Recently went to Mass General, Dr. Donahue. HE spends time, lots of talking and checking, records review, further CT scan. Proposing muscle injections for further diagnosis, then we see from there. Says he goes to surgical solution as last step, after eliminating all other possibilities, because surgery is irreversible. No Kidding! Like him a lot. But he's 150 miles away. I drive no more than 5 miles at a time, all back roads only, anymore.

I have arterial and venous TOS. Nobody here knows what to do with me. Plus, they're all 30-second, "Poke'em, Pill'em, Bill'em, Bye" doctors. It better be simple, easy, and quick, or forget it. As you can tell, I am within range of many of the Big Places, but this is a little place, and we've concluded that the doctors here are the ones who couldn't cut it at the Big Places, this was as close as they could get. Local ER?--day or night, it takes at least 6 hours to get through the place, twice I/my kid were stuck in a curtain/room and FORGOTTEN, even tho seeing/asking people during whole time, it didn't occur to them that no one was in charge of us anymore (went off-shift) until we finally complained point blank. If you're sure you're in danger of dying, it's the place to go, otherwise, it's a place to avoid at all costs. Sigh.

And the hospital will NOT ALLOW me to see another vascular doctor in their system (which includes most everybody in the area, and everybody who has the slightest inkling of TOS) for a second opinion on their first guy. Office manager herself called to tell me that and cancel my appointment with someone else. It's policy. Their doctors are NOT ALLOWED to offer a contradicting opinion on each other. Explains a lot about the way things are here. Hence the trips farther out to the Big Names like Yale and Columbia.

My lists are so long, after this accident and all, that they don't even pretend to care, some of them. And then I get this "weird TOS thing", which many have barely heard about, and then its even the rarer kind of TOS, with weird extra effects like "the weird breathing thing" and "the eye thing" and "the dizziness thing", on top of the back problems and knee problems and arm problems and etc from the accident (which was 15 months ago). I need to turn this into a 30 second poke'em pill'em bill'em problem before I go in, or I'll just be wasting my time and energy, and energy is a rare thing anymore.

Sorry for letting loose. It's been a long long trip, and I don't see any possibility of an end, at this point. When I can at least figure out what something is, it makes it easier to tolerate. Also makes it easier to go to the doc when I can hand them the info so they don't have to figure it out for themselves.

What you describe reminds me of when my top ribs had raised up and gotten stuck after some really severe spasms.

I had a feeling like a tight turtleneck sweater was on all the time, was constantly pulling on neckline of my tops .
felt like I had to clear my throat all the time
just a weird pressure that would not go away

I found an advanced PT (taught PT also) for an independent evaluation and during the exam I was mentioning those symptoms - so he said "let me try something" - I said OK..
He placed his hands on my top rib on one side and held down with firm pressure, then released and stepped back to see if any change happened.
A student was assisting/observing with notes and such.
He asked her to look at how much that side had lowed compared to the other. 1/2" or 3/4' can't recall but it was a noticeable amount.
so he did the other side too and same result.

That weird tension & the throat feelings were gone and I was able to drive home without having to constantly switch hands on the wheel.

That raised top rib had been closing off /pinching things between the collarbone even more than usual.

My chiro had resolved the severe spasms and helped with misalignments & muscle pain and many symptoms, he didn't realize about the raised top rib.
After telling him about the PT eval and what happened , chiro always checks the top rib now.
He only has to adjust it once in awhile and I haven't had any of those severe spasms since. I know what set them off and don't temp it anymore.

With the plate /screws and such it's hard to say if it might apply for you or if it is something else causing that pressure & feelings for you.

Have you had any really good /expert PT to feel the tissues and see what they think?
some time the hands will tell more than imaging - if the person is really good.
How long ago did the accident happen? weeks, months , years?
You don't have to give specific date , just wondering how far along you are healing wise.

PS, after reading your second post I can add a few more things.

Look in our useful sticky threads up at the top of our TOS forum there/s a dr& PT thread also.
in post # 1 of the useful sticky thread look at the alternative therapies, the chiropractic info
I'm thinking your c1 c2 are misaligned - don't know if any injury in that area though..
possibly other spinal misalignment s since you mention lower body sx too.

MDs generally do not study the body/structures in depth like PT & DCs unless they are personally interested.

Expert DCs or PTs might be something to look into.

[QUOTE=winic1;759048]
Recently went to Mass General, Dr. Donahue. HE spends time, lots of talking and checking, records review, further CT scan. Proposing muscle injections for further diagnosis, then we see from there. Says he goes to surgical solution as last step, after eliminating all other possibilities, because surgery is irreversible. No Kidding! Like him a lot. But he's 150 miles away. I drive no more than 5 miles at a time, all back roads only, anymore.

Sorry you are going through this crap. I too was the victim of an MVA...only it agravated my tos. I have met dr. D as well. There are some ont the forum who "love thier surgeons" at least thats how it seems...I dont want to come accross that way. But I do believe you are in good hands with dr. D. Like you say...he sees surgery as a last resort because it is irreversible. There is no going back once it is done. He will look at all options with you. That being said, i do believe there is a place for surgery....it should be considered a last resort though... after it is done and you still have ongoing problems most chiro's. etc, will not work on you. An old friend of mine once said it was like the game Jenage, once you take one piece out...you never know what is going to happen...
Cheers,
Jay.

Have any docs discussed the possiblity of subclavian steal syndrome with you? I know you are having a struggle with your local docs, but perhaps you could e-mail or call Dr. Donahue and ask him about it.

Oh great. Something worse, and weirder still. Eyes, headache and lack of sleep are interfering with me reading up on this, all I can find on initial searching are highly technical articles, do you have a link to something written in basic human?

I have to fire my GP and find a replacement. Called yesterday because the neck thing was really acting up, had my pulse running at 119 consistently, bp up, ears ringing, headache, short of breath, at first they said come in, but then they called back and said they wouldn't let me come in to see doc because "we generally save the last two appointments of the day for emergencies, and the doctor doesn't think your bp is really that high". It was 45 minutes before the end of their day at that point, how many more calls were they going to get? They gotta go. Soon.

So who handles Subclavian Steal Syndrome--my insurance doesn't require referrals, I can go straight to someone who might have a clue. Would it be a cardiologist? The one I got sent to when the TOS started playing tricks with my bp is a decent doc, her I would try seeing again.