Hi There. Does anyone on this board have Thoracic Outlet Syndrome or know anything about it? I searched the board and there are a few threads from many years ago. I believe I have this disorder or something very similar. I am having a hard time getting doctors to listen to me. I have had two cervical spinal surgeries (fusions) that I was told will solve my pain but they haven't. It's hard to find information on this. I have read a bit about it and it looks like there aren't a lot of doctors who know a lot about this syndrome. Can anyone please tell me if they know anything about it? Thank you
Hi There. Does anyone on this board have Thoracic Outlet Syndrome or know anything about it? I searched the board and there are a few threads from many years ago. I believe I have this disorder or something very similar. I am having a hard time getting doctors to listen to me. I have had two cervical spinal surgeries (fusions) that I was told will solve my pain but they haven't. It's hard to find information on this. I have read a bit about it and it looks like there aren't a lot of doctors who know a lot about this syndrome. Can anyone please tell me if they know anything about it? Thank you
Nerves and blood vessels emerge from the upper chest and enters the upper limb. Where the site of compression is and the structures involved gives a veriety of clinical signs and symptoms. You say there arn't a lot of doctors who know a lot about this syndrome. That is perhaps a bit unfair to the docs as this is a most confusing condition. Complaints are often vague and contradictory. One question, is it nerves or blood vessels? Is there a thrombosis? although that is usually an easy one. Even with sophistocated tests it is not easy to diagnose. Also there are about three or four sites where neuovasclar compression can take place. If it is the blood supply it can be a dull ache, hand odema and a somewhat swollen viens. Nerves are somewhat different, intermitent, tingling on the little finger side of the hand and worsening with your hand above your head. This may give you something to notice and you can relate your findings to your doc.
James
Yeah my dr. thinks I have it. Tests tomorrow. I'm in a great deal of pain right now, waiting for the percocet to kick in. I've had this chronic pain in my arm for 2.5 years now, I've had every test in the book it seems. After an EMG I was diagnosed with carpal tunnel syndrome, which can cause arm pain. I had CT release surgery, which may or may not have helped the pain - it's different now. A year ago, the pain was so severe that I would seriously scream into my pillow, almost called an ambulance a number of times because I couldn't deal. I was on morphine, which I hated so I quit that. That pain was daily - started right in my upper arm/shoulder, like where you'd get a tattoo. That's where it is now, but less severe. It moves around though - and it hurts all the way down to my hand. By move I mean it can move from that upper arm area to under my arm, to the back of my arm and on down to my forearm. What's weird is when it's really bad, I can feel it in the side of my face and the outside of my ear. Right now, it feels like someone is driving a big blunt nail right into my arm. In the past I was on neurontin, which I hated, but it did help - just made me tired and stupid, my brain just didn't work right. I have been taking percocets for 2.5 years, but only when it hurts, which granted is daily, but when I can go without, I do. Last night I actually went to sleep without taking them which always thrills me because it's usually the worst at night. Of course I'm making up for it this morning, called in for this morning because I can't work or drive til they wear off. I really hope it's TOS. I don't have a cervical rib, and I sure as heck wont have surgery for it. I was told, if the tests are positive, I would have a scalene block - a shot of bottom in the scalene muscle. Good lord, if that's all it takes to alleviate this horrible pain, I will seriously do back flips. I'm so so sick of hurting. But the test is they'll put a pulse-oximeter thing on my finger than make me do some exercises to see if the amount of oxygen in my blood decreases. I was telling my dr that I have started working out in the past couple months, and doing certain exercises, particularly lying on the floor with my arm straight over my head on the floor then raising it and touching my toe on the opposite foot which will be lifted in the air (for abs). I won't do that exercise because it hurts without fail. But I take a percocet before I work out because my arm always hurts. Anyway, long winded response for ya. Good luck getting you dr to listen. That is SO frustrating, I know. Ive been saying I think it's a pinched nerve or something in my shoulder since Day 1, and now, finally, they're considering it may be. I just want to be pain and drug free please.
Last edited by MyEye!; 03-21-2011 at 06:41 AM.
Reason: A shot of bottom - should be a shot of Botox, hard to edit on an iPad
id look up manual therapists..doctors are complete morons with this go to a good physical thearpist and dont let them tell you to lift weights!!!!!!!!!!!!
I was diagnosed on Tuesday 4/5 with Pectoralis Minor Syndrome by Dr. Sanders in Denver. He's the major specialist on this. Treatment is stretching! So not thoracic outlet for me. We'll see if the stretches work, should take a couple weeks I was told. He didn't say to stop working out or anything.
I was diagnosed on Tuesday 4/5 with Pectoralis Minor Syndrome by Dr. Sanders in Denver. He's the major specialist on this. Treatment is stretching! So not thoracic outlet for me. We'll see if the stretches work, should take a couple weeks I was told. He didn't say to stop working out or anything.
This is interesting, there is no muscle testing position which will enable you to distinguish it from pec major very easily. Pectoralis minor draws the shoulder blade forwards and downwards. If the shoulder blade is held more rigid by other muscles it will elevate the ribs. Can you remember what you did, if anything to get this condition. Also where is your pain.
Pec minor is different from thoracic outlet as it is external to the ribs.
James
It has to do with the nerve running right below the Pectoralis minor. The median nerve gets irritated by the muscle. This is how I understood it anyway. As for my pain, I get excruciating pain down my arm to my hand which will getnumb and tingly, and pain under my arm as well.
Quote:
Originally Posted by james079
This is interesting, there is no muscle testing position which will enable you to distinguish it from pec major very easily. Pectoralis minor draws the shoulder blade forwards and downwards. If the shoulder blade is held more rigid by other muscles it will elevate the ribs. Can you remember what you did, if anything to get this condition. Also where is your pain.
Pec minor is different from thoracic outlet as it is external to the ribs.
James
What kind of specialist are the doctors who diagnose these conditions? I am not close to Denver so I can't go there. I'm in the Milwaukee/Chicago/Madison area. Is this a neurologist, a thoracic surgeon????
Also, what tests did you get done or do in order to diagnose this? I have major pain in the upper thoracic/scapular area, under the arm and in the front and back of the armpit, down the back of my arm to the outside of my elbow. It doesn't hurt too much into my hand, but when I have my arm up my pinkie falls asleep. However, the main thing that can make the difference in my pain is if I put my arm over my head, my pain gets dramatically BETTER. My surgeon told me this is called the "hyper-abduction sign" but he didn't say much more than that. What does is mean? I need help... I try to do everything right-handed so I can walk around and sit with my arm over my head, but it's hard to type that way. If I am forced to sit with my arm hanging down at my side, I will get excruciating, mind-blowing pain. Lift my arm- major relief. 3 years now and I can't get a doctor to listen to me that maybe, just maybe, this isn't from my neck (2 surgeries later).
I believe Dr. Sanders is a vascular surgeon. If you call his office - perhaps they can refer you to someone near you? 303-388-6461. They're very nice.
As for the tests he did on me - this is what it says on the narrative report I received:
Grip -- R was 70lbs / L was 50lbs
Scalene tenderness - checked bilaterally
tinel's over plexus - checked bilaterally
direct plexus pressure - checked bilaterally
shoulder tenderness -- checked bilaterally
arm abduction - checked 180degrees bilaterally
neck -- checked full range of motion
head tilt - left and right
upper limb tension test
chest wall - checked for tenderness
axillae - checked R and L
trapezius tenderness - checked L and R
rhomboid tenderness - checked L and R
spine -- checked for tenderness cervical and dorsal spine
hands - did a tinels and phelans
elbows -- did a tinels and checked for epicondyle tenderness
pronator tunnel -- tinels
radial tunnel -- tinels
sensation in hands
90degree AER -- abducted arms to 90degrees in external rotation
And he gave me a left pectoralis minor block of 4cc of 1% Xylocaine in the left pec-minor tendon area.
Not sure if that info will help but maybe you can take it to a vascular surgeon near you and see what he/she says.
On this for me it says under Impression - Left pectoralis minor syndrome. Under recommendations it says a stretching program for the next 3 months, quite possibly will clear up symptoms, if not pectoralis minor tenotomy may be a possibility (no f'in way)
Also, what tests did you get done or do in order to diagnose this? I have major pain in the upper thoracic/scapular area, under the arm and in the front and back of the armpit, down the back of my arm to the outside of my elbow. It doesn't hurt too much into my hand, but when I have my arm up my pinkie falls asleep. However, the main thing that can make the difference in my pain is if I put my arm over my head, my pain gets dramatically BETTER. My surgeon told me this is called the "hyper-abduction sign" but he didn't say much more than that. What does is mean? I need help... I try to do everything right-handed so I can walk around and sit with my arm over my head, but it's hard to type that way. If I am forced to sit with my arm hanging down at my side, I will get excruciating, mind-blowing pain. Lift my arm- major relief. 3 years now and I can't get a doctor to listen to me that maybe, just maybe, this isn't from my neck (2 surgeries later).
You seem to have a seventh cervical root. Your pain is in the place you would expect.
The givaway is the lessening of pain with the had above the head. In the roots above at say c5 and 6 the nerve is stretched with the hand above the head, in the 7th it is more relaxed up above the head. Try this test. Elbows to your side and forearms out in front. Have your partner make a fist under your fists. You slowly and steadily push down as hard as you can. See if both arm,( triceps), have the same strength and if you have pain doing it. Let us know.
James
I have not tried that test yet, but I will ask my husband to test it with me tomorrow. I do think that probably my left arm (the side with pain) is weaker in this position than my right. I don't know how much of that would have to do with my being right handed, but we'll see. I had my fusions at C5-C6 and no one can seem to get past that. I have suggested other levels might be the problem, or as I suspect, an upper thoracic/brachial plexus thing. My doctor has agreed yesterday to refer me to Mayo Clinic for full testing and diagnosis. I'm hopeful they will uncover what has been plaguing me for these years. Thanks for all your helpful info.
So the nerve is the C6-C7 nerve, or the C7-T1 nerve that is suspected?
I have not tried that test yet, but I will ask my husband to test it with me tomorrow. I do think that probably my left arm (the side with pain) is weaker in this position than my right. I don't know how much of that would have to do with my being right handed, but we'll see. I had my fusions at C5-C6 and no one can seem to get past that. I have suggested other levels might be the problem, or as I suspect, an upper thoracic/brachial plexus thing. My doctor has agreed yesterday to refer me to Mayo Clinic for full testing and diagnosis. I'm hopeful they will uncover what has been plaguing me for these years. Thanks for all your helpful info.
So the nerve is the C6-C7 nerve, or the C7-T1 nerve that is suspected?
Would you mind sharing the stretching protocol? I have TOS with pec minor involvement but have not gotten any specific PT advice for the pec minor part. Does Dr. Sanders believe the tenotomy is helpful, or only a last resort? I noticed you said "no f'in way" about getting it done, is there a reason you feel that way?
Hi There. Does anyone on this board have Thoracic Outlet Syndrome or know anything about it? I searched the board and there are a few threads from many years ago. I believe I have this disorder or something very similar. I am having a hard time getting doctors to listen to me. I have had two cervical spinal surgeries (fusions) that I was told will solve my pain but they haven't. It's hard to find information on this. I have read a bit about it and it looks like there aren't a lot of doctors who know a lot about this syndrome. Can anyone please tell me if they know anything about it? Thank you
Hi my name's Jodie and I was diagnosed with Thoracic Outlet Syndrome in October (only happened because I went to hydrotherapy and she believed me and referred me on). Anyway TOS is when the veins, arteries and/or the nerves are compressed in the space between the clavicle and the first rib. This causes your arms and maybe shoulder area to go numb, limp, have pins & needles and pain ( my pain is like needles are being stabbed into my whole arms, both of them — only way I could describe it to the doctors). These symptoms can be constant or they can come and go like mine do. You can have good days with hardly any problems. Contact me for anymore info.
I was diagnosed about the same time as you were. I have shortened scalenes due to a rearend accident back in December of 2010. I spent about ten months with a doctor that insisted the problem was in my spine. I think some of my pain was related to spinal issues but that resolved with a facet injection and then pain gradually came back and in both arms. I went to a doctor who specializes in TOS. He did a scalene block.....amazing difference. I could tilt my head and stretch my arms up without pain. After that I had botox injections in both anterior scalenes and right pec minor. I was almost pain free for a month or so, other than some shoulder pain which turned out to be another issue, then the pain came back. I am scheduled for surgery on March 30, 2012. The surgeon I am seeing removes the anterior and middle scalene muscles rather than doing a rib resection. I am a little apprehensive but so anxious to have a chance to be rid of this pain. Have you looked at surgery?
Surgery isn't really an option as it would be explority and I live in the UK so I can not find a doctor specialising in T0S. However as I am only 15 it is quite extensive surgery to just explore and maybe not resolve the problems.
I hope your surgery goes well that date is my last day of school for easter holidays just realised and I'm doing my GCSEs this year and next year so wouldn't want to be out of school for long because I do art.
Have you tried hydrotherapy before? Really helped for me the last time but on the NHS you only get 6 weeks although I was able to secure 6 months somehow??? However was offered more but only got 3 weeks this time as I kept having to miss appointments from illnesses. As ever since this started I semm more suceptable to colds and bugs, has this happend to you?
I have not noticed that the TOS has caused me to be sick more often. I just get very tired of the daily pain. I am okay in the morning but after trying to work it gets much worse. I have to lie down at work at lunch and when I get home I pretty much take a pain pill and go to bed.
Is there an event that caused your TOS to start? My scalenes were overstretched and now they have shortened. I have not tried hydrotherapy but I have been to three therapists, had lots of PT and massage. I have been told by two of the PTs that this is not going away. It will only get worse as time goes by. I have already lost muscle mass in my left hand in the ulnar nerve area. I have run out of options other than surgery.
