Other possible diagnosis??
 

My doctor told me yesterday that he doesn't think it's TOS because my CT, ultrasound, and EMG all came back negative. He said for me to do some research on my own and bring to him in 2 weeks and maybe we can figure out what's wrong with me. I already have a lot of TOS info and was wondering if anyone knows of any good web sites of conditions that are similar to TOS? BTW, 3 physical therapists think I have TOS despite what the doctor says. Also has anyone had much success with yoga? The doctor recommended that I try yoga classes 3-5 times a week and I'm just not convinced that's a good idea as I can only tolerate very minimal stretching at PT at this point.

What are your sx?
Yoga has good and bad in it for TOS. I did and still do some Yoga poses/stretches but I know which are okay for me and which are not. Yoga actually helped me start to find stretches and remedies that provided relief. The PT work incorporated many Yoga stretches/poses without even knowing that I do Yoga. Again, listen to your body and IT will tell you what IS or IS NOT good for it. For me OPENING the chest was okay...but anything that required shoulder to bear a load was not good...also anything that would increase the compression was not good...so for example eagle pose is a definite no-no for me. Down Dog requires loading the shoulder...a no-no.

My symptoms are:
constant throbbing pain in right shoulder with random stabbing pains
right arm aches and feels like it just doesn't "fit" right
right hand gets cold with elevation or use
numbness & tingling in right pinky & ring finger
stabbing, burning pain in underarm area
tenderness over clavicle and pec area
scalene muscle has feeling of tightness
headaches that start at back of head & over right side of head
feeling that left side of throat is being "slashed"
dizziness when I move my head
loss of dexterity in right hand
burning pain over scapula
swelling in right hand
color changes in right hand


tests that have been done:
MRI of rotator cuff - normal
cervical xrays - normal
EMG - normal (did not do with arm in positions that cause symptoms)
CT - normal (was done with arm down at side)
ultrasound - normal (the tech who did this had no clue what she was doing, she had a book out and even said she didn't understand how to position me)
shoulder xray - normal

I've had 17 sessions of PT since October and have only been able to tolerate very minimal stretching....chin tucks, shoulder shrugs, that sort of thing.

It couldn't hurt, IMHO, to try my favorite....get the foam roller lie on it with your butt on one end and your head on the other. Legs bent, feet on floor. Hold stomach in so lower back is somewhat flat against foam roller. Allow shoulders to drape back around the roundness of the roller opening chest. Try some yogic breathing with abs (not chest). If that helps..you have a start to self remedy.

Your sxs sure sound a lot like mine. I had left rib resection in 2005 and am worse for it. Like you, I had normal nerve conduction studies, relatively normal cervical MRIs, normal xrays. I did have the 3D MRI/MRA study with Dr. Collins, which showed TOS.

I tried yoga at the beginning of this journey. I liked it for the mental aspect, but I couldn't take all the arm forward and above positions. So I just do abdominal breathing -- often on my foam roller.

Good luck.

At this point, I would go to Denver and see two of the three top docs there and get a definitive diagnosis. They see TOS so constantly and so often, that for me, that would stop the merry-go-round, which I was also on, here in So. Cal. And EMG is only worth the skill of the person who does it. Dr. Togut says EMGs aren't even made to test for TOS, the scientific reasons behind that statement are too hard for me to understand but DiMarie has posted it before. So I'd want to be seen, touched and "decided" by one of the top docs.

foam roll
 

I've never ever heard a doctor to tell me to go get info. for us to discuss.

It just has never happened. They usually have an opinion (right or wrong) made up before they even open up their mouth to me.

None of us are doctors. Even if we were, there'd be the conflict of interest of "working on" oneself...

This doc doesn't sound right to me in the least.

I would love to go to Denver but right now that's out of the question financially. Since this all started in early October, I've only received 3 weeks of TTD checks and have already completely wiped out my meager savings. At this point I don't even know how I'm going to be able to pay my rent this month. Maybe someday in the future......

That makes a lot of sense. I honestly don't think I'm ready for a foam roll yet, even just using a small towel rolled up is too much for me right now.

Well, this doctor's opinion of me having TOS is that it's just a "notion" that the physical therapist has. As for wanting info from me, he knows I have a degree in nursing and that I've done some research on the subject. He admits he doesn't know exactly what is wrong with me. While it may not be the norm, maybe we can finally make some progress.

At one point, I thought I might have TOS. I did the test where you take your pulse when your arm is down, and then take it when your arm is up in the air. Neither I nor my husband could even find a pulse when it was up in the air. I also had visually obvious circulatory insufficiency to my hand (mottled), hand always cold, easily spasmed, sensitized, and spasms so bad on that side of the neck and shoulder that I would get headaches and visually obvious atrophy. My neurologist moved my arm into the air and said after about 2 seconds, "Your pulse is fine. You definitely don't have TOS". She was right. I asked her if there were tests that could confirm it, and she said yes but suggested I save my $$. I will ask her in 3 months when I see her for you. Can you work up a sweat daily doing aerobics of some kind? That would go a ways toward delaying problems. Do you have health insurance? If I were you, I would want to go to as many bulletin boards as possible asking how TOS is diagnosed, because my neurologist is usually right, as she was in my case. You wouldn't want a pinched nerve to become damaged because you assumed that it was TOS if it isn't, for example.
Good luck,
Jane

It looks like KLS had many imaging tests - I don't know if they imaged the C spine for sure - but that should be one of the first things to check I would think.
The physiatrist ordered MRI & xrays of T & C spine for me - to be sure C spine is not causing the arm problems.

Question -
I guess this is one thing I'm not 100 sure of -
if you don't have vascular compressions - would you still lose your pulse in the arm? if you have nerve compression only??

Yes, they imaged the C-spine (twice) and no problems were detected there either.

I am confused.

I have TOS. No question. But, I do not have any reaction to the holding your arm in the air thing - I have a pulse when my arm is in the air. I can also do the test where you open and close your hands over and over.

So just because these two tests are not reactive in me, is everyone saying then that the person doesn't have TOS?

I am confused by these postings...is anyone else?

Tamara, i am as confused too. I have never lost my pulse, in any position, and while I can't do the open and close your hand thing, there are other "classic" TOS signs I don't have either.

Thanks for the info!!! I'm going to definitely discuss this with my attorney! Right now he's telling me that because of TN law I'm not entitled to see another doctor at this point but maybe since my doctor is being pushed towards MMI that may be possible in the very near future to see someone else.

From all I've read, I don't think TOS can be diagnosed without taking into consideration all symptoms and ruling out everything else. Just because you don't have positive reactions to just those two tests, I wouldn't think that would mean a negative diagnosis of TOS, it's the BIG picture that counts. It's also my understanding that TOS encompasses compression in several places and the symptoms would depend on exactly where the compression is and the severity of the compression....ie.....how much of the nerve or blood vessel is being pinched, how long it's been going on, the extent of permanent damage. But then by no means am I doctor and I'm fairly new to all this so that's just my thoughts on the subject.

Quote:

Originally Posted by Jo55 (Post 205167) Question - I guess this is one thing I'm not 100 sure of - if you don't have vascular compressions - would you still lose your pulse in the arm? if you have nerve compression only??

I was just wondering because of what gizmogirl said.
From all I've read loss of pulse can be an indicator - but doesn't prove or disprove TOS all by itself.

[At one point, I thought I might have TOS. I did the test where you take your pulse when your arm is down, and then take it when your arm is up in the air. Neither I nor my husband could even find a pulse when it was up in the air. I also had visually obvious circulatory insufficiency to my hand (mottled), hand always cold, easily spasmed, sensitized, and spasms so bad on that side of the neck and shoulder that I would get headaches and visually obvious atrophy. My neurologist moved my arm into the air and said after about 2 seconds, "Your pulse is fine. You definitely don't have TOS". She was right. I asked her if there were tests that could confirm it, and she said yes but suggested I save my $$]

In TN, do you not have rights to elect to change your primary treating physician at will? You can only pick on, and must stay with one until he releases you? And, would this doctor not discuss with you a way by which you could ask to see a top TOS doctor for just a consult, via a referral by this doctor, for a one-shot exam and consultation opinion report, that then your primary doc would incorporate into his reports and make certain decisions for your care?

Can you get a second opinion and say that you feel you are being railroaded to closing your case without the correct diagnosis?

I am not a practicing attorney anymore, but I vaguely remember that you would want to plan and execute this BEFORE you are made MMI (or P&Sd in CA.) Reason? MMI says that you're through. They've done all they can, and except for regular maintenance so to speak, this is your level and this is what can be expected. Well, if they haven't even got the diagnosis correct, then how can any of that be true?

So, can your attorney get you switched from that doctor you have, (or use him if he's malleable), to say, (and this is in your primary doctor's report by the way) "A brief short story about you and your injury. What the doc's testings have shown him. Then, we do not have doctors with the requisite level of expertise in TOS diagnostics in this area. I have questions lingering on f, g & I. We must go to X, W or Z cities to find a doctor who is an expert for this man to get an appropriate diagnosis, treatment plan and even possible surgical consult. Based on A, B, C & D testings and findings we have done, time if of the essence. I propose doc Joe, Bing and Boo, cities ... Then the doc addresses any opposing doc's opinions, if there are any." That report gets served around on everyone, there's a hearing, and the judge decides. Later, if one of the TOS top docs - and bring in our list to yoru doc to see our list of doctors - says you need surgery and what type, the doc writes a report, and your primary doc incorporates that report and the docs' opinion, IF he agrees. Usually they do. Usually docs truly respect eachother's work. It is the attorneys and adjusters who cause all of the muckety muck and confusion!!!

So then you might have to do a hearing all over again for the actual surgery.

But that's how it's done, I think maybe, just my imaginings here as I'm sure not giving legal advice.

But NO ONE can do this without an attorney from that area, and it is NOT a do-it-yourself system. I used an attorney, for my family I always used an attorney other than me. There are MANY reasons for that - you can get too distracted and emotional and forget!

And the laws change all of the time. That's why you must see a top attorney in your area. You don't want to do all of this work and have your reports not allowed in due to some technicality.

Good luck.

In TN you have to choose a doctor from a list provided from your employer (in my case none of them would have been a place I would have chosen on my own). Unless that doctor refers a patient on to another doctor, the patient is stuck unless the employer agrees to provide another doctor. I do have an attorney but am not very happy with him as I don't think he's doing enough. I have a hard time getting any answers out of him. Once again you've brought up some good questions that I intend to ask my attorney! Thanks!!!

If you can find a better atty fire the one you have - or threaten to if they don't respond at all.
I should have fired mine and switched to a group with women attys - I just emailed them a question and they replied right away - but couldn't give any advice since I had the other atty.:(
I wasn't sure about the process of changing attys so i stuck it out with the 1st one...:(:(

PUlse loss
 

You only lose your pulse if you actually have arterial compression. (maybe veinous,...too, not so sure about that) but you can have neurological compression and not lose your pulse.

I used to lose my pulse before surgery, and now after surgery i do not lose it anymore.

However, I still have nerve symptoms, and I am having a second surgery to continue correcting them....

Going back to your original question... I find it a bit odd that your doctor wants YOU to do research! Can you find a knowledgeable TOS doctor in your area?

And in regard to pulse loss - read this article (a simple, yet not 100% accurate test to check for pulse and blood flow to the arm):

http://www.nytimes.com/2007/02/25/ma...70&oref=slogin

In all states I know, there is only one amount for the attorney to take, so if a guy ends up with 3 attorneys, they split it 3 ways according to the judge. If it's 5, split 5 ways - there is not more money taken from the patient / applicant. And the case is not slowed down - the attorney amount can be decided later by the attorney(s) and the judge.

The only down side is if you're one of these hot heads who fires attorneys all of the time, they'll not want you. But almost everyone switches attorneys ONCE - usually for the reason that calls were not returned.

Before I hire an attorney, I watch them at court, I want someone who "does" my kind of injury, and I want someone who everyone seems to know - especially the court people. Court people know who's good. Loads of times they'll slip you a paper of who is good, but don't be a big jerk about it...on the down-low... and this isn't legal advice, but good ol' southern pal advice since he's from TN!