[SallyT]

Hi there - I am completely new to the use of forums, so please forgive my ignorance! I am kind of in the middle of figuring out my TOS and looking for a bit of advice for my upcoming appointment with my GP. I am in Canada.

I was told approx 2 yrs ago that I had TOS by my chiropractor based on loss of radial pulse in some manoeuvres. Later saw a neurologist, who confirmed compression but stated that is wasn't nerves. GP sent me for an ultrasound of the neck/shoulder which was normal.

I pushed for a vascular ultrasound and had that a couple of weeks ago. I had one test with a sensor placed on my finger which showed loss of blood flow to the hands (both I believe) during all manoeuvres with arms raised and military stance. The tech then looked at the blood flow in the subclavian artery with arms down and arms raised. The blood flow completely stopped. He seemed interested ("well, loooooooky here!" haha) and I was on my way. My GP called me in for results but said it was not urgent and I go in in another couple of weeks.

My symptoms include: numbness of both scapula, pain near collarbone, arm fatigue, hand cramping, grip that won't quit (stuck in tight grip position after holding/carrying something that lasts for a minute or so), forearm aching, chest pain, etc.

I have additional symptoms and I'm not sure if they're related: face tingling, ear fullness (on side where arm is raised when driving, and where seatbelt crosses over collarbone area); very occasionally my left eyelid won't open very much after lying on left arm in the evening; feeling faint/history of fainting; feeling slightly nauseous and unwell after sleeping in bad position with arms raised or when driving.

In preparing for my appointment, and understanding that this is a rare condition, I want to have some good questions ready for my doc. He has already made a referral to a thoracic surgeon for me but my understanding is that TOS is seen as wait list only as is not a priority condition.

My questions are:
What do you make of the most recent vascular ultrasound? Would this be ATOS?
If the subclavian artery goes from the heart to the arm, why would I have "head" symptoms?
If this is ATOS, is surgery urgent? From what I read it seems to be fairly serious, but his MOA stated that there was no urgency in meeting with the doc for follow-up.
What should I be asking my doc when I see him? Further tests?

I'm sorry for the long-winded message. Thanks in advance for any support/advice you can provide!

Warm wishes-
Sally

[Jomar]

Generally if not a high pain level, and can do ADLs /work/drive, & not clots, then it is not urgent.
Of course if you haven't had any expert PT you could start that now...
* expert chiro should be of help too if they use multiple modalities and have advanced training..*
I had the best /fastest results with a very good chiro, but he missed the raised top rib at first.. but when I found out he was happy to add that adjustment into my care..
*called a top rib mobilization * often can be very beneficial for us.

trigger points can be very bothersome too.

You don't mention swelling- that is usually a vein issue

the cramping of your hand could be some nerve impingement starting.
A lot of the TOS stuff does not show up on the standard test drs prefer to do, but they have to rule out other possible causes before dxing TOS.
and many general MDs are biased or not knowledgeable on TOS..

If you haven't found our sticky threads I suggest reading as much on those as you can before your appt..
sticky's are in the upper portion on this page-
http://neurotalk.psychcentral.com/forum24.html

It will make is much cleared for you, so you can make informed choices..

[SallyT]

Thanks. What are ADLs? I don't think I have any symptoms of a clot - no discolouration, persistent swelling, etc. My left hand is swollen in the mornings but goes back to normal once up and around. I forgot to also mention (and I'm not sure if there's a connection) I get torticollis once every 2-3 months. I think I had seen somewhere on here that a number of people with TOS also have wry neck. I will have a look at the notes you suggested. Thanks!

[Jomar]

Oh, it's Activities of Daily Living.
Home & self personal care , bathroom, meals etc...

[SallyT]

Hello -
I went in for my followup and it seems like the report from the radiologist was mixed. The report stated that there is evidence of reduced blood flow which may be attributable to TOS, but may be a false-positive because the patient is not symptomatic. Aaaargh... uhm what? Don't the symptoms precede the visit to the doctor? Don't the symptoms precede diagnostic testing? I wouldn't be pursuing this in the first place if I was asymptomatic. Kind of frustrating.

So my GP is resending the referral to the thoracic surgeon and has said if the surgeon wants to pursue further testing or feels that I am a candidate for surgery, then fine. If however, the surgeon doesn't feel it adds up, we will just have to manage the condition in other ways. So I'm happy about that, but just quite confused.

I had been excited to get the call to go in for results and felt like maybe the ball was finally rolling on figuring this out. I don't believe there was any mention in the report of one bit of testing the tech did; he had looked at bloodflow in the subclavian artery and we both clearly saw that the bloodflow stopped entirely with my arm raised and came back when arm was lowered. Is this normal? Does this happen to everyone and is that why there is no mention of it?

What a wonderful resource this is. Such a gem to find.

[Jomar]

A certain small percentage of normal people can have loss of blood flow in certain arm/neck positions..

I am one of those people, I could hang by my arms and do kids stuff just fine , but as I got into my 20s ( repetitive job ) I had trouble when holding my arms up for more than a few minutes. Found this out when remodelling our home..often had to hold something up so dh could fasten it , and if he wasn't fast my arms went to sleep and got heavy..

If you happen to do those positions often or in a repetitive job environment, it could become more problematic. It was for me..

Upper body posture is a good thing to practice & work on.
some easy basic things -
http://neurotalk.psychcentral.com/album.php?albumid=422

If you can avoid surgery , that is the best way, but often some expert PT , chiropractic or bodywork is ended to get you going forward properly.

Surgeon have to have a fairly clear reason to move forward requesting a surgery, so that is probably why , you aren't in a bad enough state, and really you don't want to be there if you can avoid it.. often it is not a fix all 100% thing... scar tissue, other pain issues...can come into play...

[JNT2014]

Originally Posted by SallyT

If however, the surgeon doesn't feel it adds up, we will just have to manage the condition in other ways. So I'm happy about that, but just quite confused.

My two cents: do NOT take this as a final answer. Beware of people who cannot tell you what is actually wrong. Eight, nine, and 10 years ago I had several surgeons and physical therapists tell me that I had tendinitis or some other minor overuse problem, and that it would go away. Had any of them noticed my poor posture, overly tight neck muscles, or weak upper back, I might not be where I am now.