Went to local vascular doc, as blue-arm problem happening more often.
Figured I needed someone local with some familiarity with me, in case I ended up at the local hospital ER.

Despite Yale, Columbia, Mass Gen and NYU saying I had vascular TOS, a couple confirming from scar tissue from shoulder injury, this guy stuck hard and fast to original local doc's saying No, which is why I ended up traveling all over the northeast.

He said I have neurological TOS, since that's most typical.
He said I do not have vascular TOS.
He said it is IMPOSSIBLE to have both arterial AND venous TOS.
He said scar tissue external to the blood vessels is irrelevant and does not cause problems. He said only INTERNAL scar tissue, inside the vessels, caused by continuing compression and irritation, causes vTOS.
Therefore, I did not have vTOS.
He did say that my rib-collarbone spacing was fine, wide and clear.
He said that a CT scan could not show scar tissue, even tho the one I have from Mass Gen reports scar tissue and calcification (or ossification, I forget exact term) at the vessels, radiologist's report, not doc's interpretation.
He said I have scar tissue around the nerve, and kept pointing ABOVE my collarbone area, even tho there is no lab/testing reports indicating such, nor can they because the plate in my collarbone obscures both CT and MRI in the area.
He pressed on some points above in my shoulder and neck, with no results except pain from his thumb, but insisted it's nTOS despite complete absence of any pain shooting or spreading down my arm.
He said it's nerve being compressed by scar tissue causing my hand and arm to go blue and swollen and numb.
Totally denied any possibility of related circulatory problems (like subclavian steal or vertebrobasilar insufficiency), despite my having EVERY symptom at times, like I had written the descriptions myself.

Offered to settle the vascular question by doing arteriograms, tried his best NOT to explain the procedures to me, as I was asking about what type of dye/tracer and what type of imaging (been made radioactive 3 times already this year, have had 5 CT scans of my upper body in the past couple years, refused a few others because I am going to glow in the dark pretty soon), told me "don't you worry about that" and when I persisted and told him why, he said, I'm in there getting exposed every day and I don't have cancer, so...

So.......aside from it's the crummy local hospital, and he was an absolute rude jerk (interrupted every sentence I tried to say or ask) making proclamations, not explanations or descriptions, I'm thinking that if I need an ER some day when I can't clear the blue arm by raising & moving it, I'm better off making my husband drive me to ANY other hospital, even tho they're all an hour or more away, than this local one which is only 20 minutes away.

What about all he said?
How much of that is true?
And if he's a vascular doctor, why was he saying HE would operate to free the nerve from the supposed scar tissue, when there's no vascular involvement?
Oh yeah, and he said he uses the hyaluronic acid sheets during surgery to prevent further scarring and adhesion, tried to tell me it prevents further scarring, IF I was even to scar again, I make keloids like crazy inside and out, when I started pointing that out he backtracked, and insisted he would "buy me more time". He also said that getting the steroid shots in the external keloid "makes more scar tissue inside".

Huh?

If you've seen all those other surgeons confirming A and/or V TOS, are you not seeing them to follow your case? I know that, personally, I was not at all impressed with the Yale surgeons. I was not at all convinced they knew what they were talking about and they were happy to give me a diagnosis of TOS without anything further than one provocative test. I thought I only had NTOS but when I later went to another doctor for a second opinion it was found that I had AVNTOS.
That being said, Mass General is extremely well-respected for TOS diagnosis and if you can go there, that's really where I would recommend that you be.
Like you, I keloid like crazy. I was told that they would not do steroid injections to prevent the formation of keloids because the chest area is notorious for not healing very well and he didn't want to risk me not being able to heal from my surgery when the scars could (hopefully) be managed with good post-op care, a watchful eye, and physical therapy. I had surgery and my scar looks great after making sure to massage it regularly and apply breast milk to it. If you want to see a picture, head over to my thread "bilateral transsternal first rib resection."
Anyway, don't allow the local guy to do your surgery. He doesn't sound like he knows a thing of what he's talking about and I have no respect for a doctor that goes outside their area of knowledge. A vascular surgeon, simply, can't read a CT scan like a radiologist can.
That being said, vascular surgeons are the normal ones to take care of NTOS surgically. Neurosurgeons typically don't even believe that TOS exists and they do not do the surgery because they are not able to cut bone whereas a vascular surgeon can. Sometimes, TOS decompression surgery requires the cutting of bone such as in my case where I had 2 ribs removed.
Hope that helped!

Was not impressed with Yale, either, which was first place. Went to Columbia for second opinion, treatment differed a bit from first, and Dr was lacking in personality (please don't act bored when you're talking about chopping out part of my body!). Freaked out by prospect of surgery, went to Mass Gen & saw Donahue. Who, unfortunately, mixed someone else's MRI in with mine, this other person had bad discs in neck, so his written diagnosisi and evaluation was completely wrong, and when I finally got him to talk to me (phone) he admitted the mistake but denied any wrongdoing on his part and said, "well, if we didn't connect that badly, then I'm not the doctor for you" and dumped me. His office had also mucked up dealing with my insurance, failed to appeal in a timely manner, and so even if he hadn't royally screwed up my case, the insurance would no longer, never, approve payment for any procedures by him. So much for the shining Dr. Donahue. Went to NYU, was clearly and completely explained and discussed, there is no bone problem, internal scarring from major car accident and broken collarbone that did not heal and was finally surgically fixed 3-1/2 months later after shifting pieces had turned my arm blue. NYU said, given my scarring history, internal keloids not just surface, surgery is the last thing I want to risk, much greater chance of losing my arm than fixing it.

So, have been going to a PT who does myofascial release stuff for the last year and a half. (also working on rest of injuries from accident.) Scar tissue is still forming, inside and out. Tried treating external for months, lost cause. Have had the injections 4 times, it's STILL growing back 3 years after accident.

Internal is evidently still changing, too, because last several weeks, things are getting worse, happening more often and more easily. Takes us over 2 hours to get to NYU, by train, as we don't do city driving (live rural). Trains only run during the day, and mostly into the City in the morning and out of it at night. I can't drive anymore, so hubby has to take a vacation day from work to drive us to train station, then we ride in and take cabs and it takes basically a whole day to do a trip into a doc in the city.

Woke up in middle of night a couple weeks ago, arm more blue and numb than usual, while moving it to make it clear, wondering just who the heck I call if it doesn't pink up--my GP who is useless, can't even get an appointment with, wait two weeks to get 5 minutes with him during which time he leaves to take a phone call (switching soon, but can't get in to new doc for 2 months), my neurologist who asked my what did I think she should do? my physiatrist who always only asks, what does Dr. X, Y, Z think? and never does anything that someone else hasn't come up with, only the others always just ask, what does Dr. X, Y, Z think, also. the cardiologist? the pulmonologist? heck, the best doctor I have out of all of them is the ophthalmologist. Only he can't do anything about this.

So, being unable to easily get to the NYU doc, or any of the others (Yale is an hour and a half away, Boston, if it was still viable, 3-1/2 hrs), having no local regular doc who knows the slightest thing about this (hence all the asking, what do the other docs think), I thought it might be a good idea to meet a local vascular guy just in case I end up in the ER here for lack of any other choice. But this guy was, well, as described above. Which makes me think I'm better off NOT going to the local hospital at all if things turn bad and won't clear up, not unless it's likely I will die if I don't get to an ER in no more than 20 minutes.

Just wondering how much, if any, of what latest local doc said is valid, as it's not what I've heard elsewhere. Of course, now I have six different opinions and approaches, varying from a little to a lot, but no one was ever flat out so definitive in what can and cannot be happening, nor so flat out refused to answer any of my questions, both about what was going on in my shoulder, and what was involved in the testing he proposed (and no, even if I wanted to go through with it, I would not consider having it done at the local yokel hospital anyway, even if I DID like the guy.)

I feel your pain.

My good doctor is retiring. Dr . Atasoy, in Louisville. About three hours away. I would scoot my way to him. He helped me in so many ways.

And my family doctor retired also. So, I'm out in the cold, too.

I do much better theses Days but still have a few problems if I get involved in an exacerbation situation.

I went to a nurse practitioner for gyno stuff. She was very understanding but only does the gyno stuff. So, maybe ill find someone local and maybe not.

Keeping score of my healthcare providers, when I didn't feel like I was in good hands, I would not return to that person, under no circumstances. I think you know what I mean

Yes, I sure do. got a whole list of "don't bothers" and "avoid at all costs".

Is why if I end up needing an ER or hospital over this, I DON'T intend to go to the local one if possible. This guy and one worse than him are what they have for vascular doctors.

Did a little reading today (a little at a time is all I can do with my eye problems) and I see nothing matching all of his declarations, and started seeing things in direct contrast, like descriptions of the surgery/procedures saying they remove the scar tissue entrapping the blood vessels, then IF that doesn't clear the problem, going further.

Is everything he said a bunch of bunk like I'm suspecting?

You'll just have to move on to the next provider and put this behind you.

I have spent years, and I stress years, angry at one doctor. still get mad when I think of Dr. Powell, in Ashland. He really led me down the wrong path and caused me a LOT of pain with his advice. I have to take blame for some of that. I had several other doctors that were telling me not to do his plan, but that was just it, "several." I chose his advice because I thought aggressive PT would get me back in the swing of things since he said I did not have TOS. HUH!!!! He knew better. I had already been diagnosed and offered surgery. He did not like my referring neurologist, at all. It was also an auto-related cause. Two strikes against me with him. It's a small world. So, I know where you're coming from.

A month later, a pain management doctor was arguing, "I don't care what Dr. Powell says, I say you have TOS." And my family physician was very concerned and tried to get me to go to Cleveland Clinic, or somewhere for help.

Being angry or upset don't help your healing needs. Counterproductive.
Actually, it will hinder your recovery.

I hope you find a caring healthcare provider soon.

Keep a journal, with your questions and concerns handy for the next victim You'll find someone. Don't despair. They're out there.

I gathered little morsels, here and there.

Graded things as positive or negative.

I have long posts, I apologize.

I pray you find relief soon...

I am out of "next providers". There is nobody else local to go to. This was an attempt to bring it back to a workable distance, as going into NYC or even New Haven or anywhere else on a regular or sudden need basis is not really possible, given that I don't drive and there is no public transportation here.

But at least I have learned that the local ER & hospital is really, really, not a place to go, under anything but "I am dying NOW" circumstances.

Which throws a big kink in the works, my current GP having proven useless, I am waiting for a first appointment with a new one (early April, the good doctors are all either not taking new patients, or booked way out). But this guy is part of the Hospital system, which owns most of the doctors, practices, specialties, services, in the area. They only refer to each other, other doctors and suppliers within the hospital system (of course, being told they could only do that would be illegal, but, somehow, they don't ever refer outside the system, and once when one WAS caught having told me to go outside the system, you never saw anyone backpedal so fast and deny it!) So now I'm going to start with a new doctor, and tell him I absolutely won't be dealing with his hospital or their supposed specialists in my main problem? Oh goody. That should go over well.

I would quite gladly just quit and live within it, but stupid arm decided to get worse recently. And of course, then all the other problems it generates. I have seven more years until my youngest is out of high school, so unfortunately I have to make myself last at least that long. But nobody's helping me, in the least.

It took me over tree years to get to a mayo fascial release therapist.

Over four years to find the right dr for me.

So, I do understand what you're going through.

I ran into a good naturopathic healer in my hometown and didn't know she had been there for years. She has since left. Expensive...

What bout a knowledgable chiropractor in your area. There are new ones coming out every year.

Just throwing these options at you. Unfortunately, there's no quick fix.

The LED/infrared light therapy pads help me a lot.

I also discovered keeping my arms fleece warm cuts down on the pain level.

Also posture can be a problem. I placed a long dressing mirror o the side of my workstation. Posture police. I caught myself giving in rolling my shoulders forward. A big NO - NO.

I also used Kinesiology tape. It was vey helpful. May be a little hard, at first.

Yoga is a good idea. Just do what you can.

A Theracane is useful.

Keeping "Palms up" is helpful. Especially trying".
Oh , so many things.

My TOS went through a crazy shift where instead of losing the supply to my arm, which was my "normal" problem, the arm was instead turning purple and the veins were bulging huge. So I shifted from arterial compression to veinous compression. Maybe a result of changes due to PT or posture or who knows what.

Anyway in addition to moving the arm around like some of you have described above, I also got relief from shoving my first rib down. Here's how I do it:

I reach across with the opposite arm and place the pad of my thumb on where the rib would come up to the spine. Obviously there is muscle in between, but you get a feel for the position after playing around. Then I tilt my head 45 degrees to create some slack in the scalenes. Then I exhale while shoving down.

This would fix my purple arm.

I showed it to a relative. They thought it was freaky!

Anyway, just wanted to share that as something you can try. Good luck.