Could this be TOS ?
 

Hi,

my issue started back in July 2013 when I started experiencing pain and burning in my right hand and wrist while using the computer (my job). I started physio but the pain got worse and started spreading right up my arm. Tingling, burning, loss of sensation on my pinky and ring finger. I went through several diagnoses : De quervain, carpal tunnel, cubital tunnel, Herniatic disc pressing on nerves. I had done nerve conduction studies for carpal and cubital tunnel , MRI for my neck , x-ray for my neck, ultra-sound for my wrist and elbow and everything came back normal. The last specialist I saw suggested I could have TOS. I can't lift my arm above my head without losing the sensation of hand/arm, burning and weakness of my arm and the same happens if I extend my arm out. My neck feels stiff, I sometimes get headaches at the back of my skull. Using the computer, watching tv and driving all give me pain and stiffness in my arm , as well as tingling and numbness.
I had an x-ray done to check for an extra rib and came back normal. I also had a duplex ultrasound to check the flow of my veins and it seemed normal too. I had a slight reduction of the flow with my arm lifted but still within the normal range. The upper limb specialist suggested I see a cardio-vascular specialist. I am lucky that WorkCover is paying for all my visits but I am not sure I am closer to a diagnoses than I was last year.
Could this be TOS even though both x-ray and ultrasound are normal ?

Most definitely! By your description it sounds like you have developed neurogenic TOS. You will want to stop activities that aggravate the symptoms and find specialists near you who specialize in TOS (physical therapy, surgeon, etc). Where are you located so we can try and offer some suggestions?

Where are you located so we can try and offer some suggestions?


Thanks for replying. I live in Brisbane, Australia.

Poor PT will make you worse! Please be cautious if you are feeling more pain or symptoms after PT. Do not stay with that PT.

Have you found our TOS forum sticky threads?
There is so much information in those that can add to replies here.
http://neurotalk.psychcentral.com/forum24.html

Welcome to the site, and I'm sorry you are going through all of this. Unfortunately, all of your symptoms are related to TOS. I've dealt with TOS for 21yrs, and all the test u stated above I had. I've had those same test at least 4 or more times, and they all came back normal. Had a third surgery, (scalenectomy and rib resection) three months ago.

Try to find a vascular surgeon in your area that knows about TOS. A lot of doctors do not know about TOS, so it's important to find someone who specializes in TOS. Keep searching and don't give up. Keep us updated on your situation.

God bless

Try to find a vascular surgeon in your area that knows about TOS. A lot of doctors do not know about TOS, so it's important to find someone who specializes in TOS. Keep searching and don't give up. Keep us updated on your situation.

Hopefully the vascular surgeon I am seeing next week can give me a more definite answer. My normal doctor doesn't believe I have TOS despite my symptoms and wants me to do a brain MRI.
Today I am in pain and I wish I could just chop my arm and shoulder off !!!!

I hope u are able to get an answer. I know the pain is unbearable at times, but don't allow it to get to u. As stated, I just had my third surgery in Dec, and I'm still having some pain and swelling. But I'm not giving up, because I have too much to live for and do. So do u. If I told u how many test I've gone through these 21yrs, u will be shocked. I've had about 3 brain MRIs, and all came back negative. I'm praying the vascular surgeon will give u an answer. Ask a lot of questions. I know it's frustrating, but we all have been in your shoes, this is why we are on this site. Maybe u can get some OTC pain pill to help with your pain.

FYI, I had my second surgery in 2003, and I tried to go back to the doctor who performed the surgery, and he didn't want to see me. Same thing happen after my first surgery. The doctor who performed my second surgery was one of the top doctors that knows about TOS. Well at least I was told that. After that, I was told all kinds of stuff from other doctors, but was still in horrible pain. I had swelling, weakness, involuntary movement, etc. I kept working through it all. Now 11 years later, this doctor told me, if I didn't have this surgery, I would lose my left arm. The other two surgeries was on the right.

So if there's someone who should have cut his arms off, it's me. I thought about that, but it's not going to prove anything. I kept praying and using my Tylenols. So u keep fighting, because I am. Starting physical therapy soon, will keep everyone updated.

God bless