This is my first time finally searching out others with my problem. I have TOS with who knows what else! Thank God I found you, because I thought I was going crazy! I have so many questions and nobody to really ask. Please help!
I had anterior disc fusion to c4-c6 two years ago. Prior to that, I had the beginning of TOS, they think, in my right arm. Nobody would listen to me when I said I had pain in my left scapula when I leaned back. Nobody ever listened. They just said they didn't know what that was from--including my neurologist. Now, after one year of different treatments by a neurologist, physical therapist and massage therapist, including exercises, scalene nerve/brachial plexus nerve blocks to both left and right scalenes, emg/ncs times two, MRI's, etc, my neurologist wants to try botox injections to the scalenes since these injections originally took my symptoms almost away on the left side. Has anyone heard of this? My surgeon wants to do another MRI since my left arm has tingling, numbness and pain as well as the neck pain to see what is going on, if anything, in my neck again. But it's like I have to suggest things myself to the neuro, who is supposed to be the best!! My PT is great. She researches for me and gave me info on Peter Edgelow and his mini kit. Should I be seeing a different doctor, like maybe a vascular surgeon, and not a neurologist? If I have neck pain; severe shoulder blade pain when leaning with scapular winging; extreme fatigue in both arms, left arm positional coldness; left arm and hand burning, tingling and numbness; and the nerve block took the symptoms almost away, is this just TOS or TOS and something else? Does anyone experience the scapular problems too? Can my neck pain and arm symptoms be another neck problem or from the TOS or both? It seems to be getting worse, not better. Please help!!!!!!!!!!! Thanks so much! I would so appreciate any answers that will help. Michele

Hi Michele and welcome to NeuroTalk. Here's the link to the TOS Forum.....you'll find a lot of helpful and caring people there who can relate to your condition. http://neurotalk.psychcentral.com/forum24.html Please feel free to have a look around and join in anywhere you feel comfortable! Glad to have you here!

welcome to neurotalk ... there are lots of friendly and supportive people here so jump right in and start posting ... should you need help, don't hesitate to ask someone ... we are here to help ...i see you have already been given a link to the TOS forum ... check it out ...its a great starting point ... hope to see you in some of the forums ... again

Michele,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are all here to assist each other as possible.

Again welcome, looking forward to seeing you around.

Darlene

Michele,
Welcome, I just joined here myself.
I've had TOS and RSD since 83, both brought on by a motor vehicle accident.
I'm not a doctor, I'm a patient.
What alarms me about your description of your pain, is the "burning", and I'm not quite sure what you mean by "left arm positional coldness". But these I have never been told are associated with TOS. They are usually RSD symptoms.
I do NOT want to be a bearer of bad news. You don't say what started all this, and I don't know why you had the original surgery.
It's just my humble opinion that you had better have RSD "Ruled Out" by a very good Neurologist, and it worries me that you don't seem to have a lot of faith in yours.
RSD is a "clinical diagnoses", and the doctor must make the call. There is no one single test.
And, unfortunately, in my experience of going through literally 100 doctors and seven years to get my Diagnoses, (talk about going crazy), I've found and learned that many neurologist's are neuro's because they wanted to be the doctor "who didn't get dirty".
That's fine, but they also need to be fine thinkers, hard thinkers. (My own Neurologist, after all this time, still has tests done, and watches me VERY carefully). I've been with him since the very early 90's.

It's your body, and Your life! If you're not completely thrilled with your doctor, seek out another, and SHOP HARD!

You are armed with what you know of your diagnoses already. So, you know where any doctor needs to go "to begin". Tell Your doctor, you don't feel fully diagnosed.
Be verbal, write it out if you must, but let the doctor know you don't want to be "conservative" until everything is ruled out.
Feel free to PM me, I'm new here, but have been at this a Long Time!

Best of Wishes to you, Michelle!

ASB

Hello Michele, and welcome to NeuroTalk! There are a lot of interesting forums, and also a lot of caring and helpful people.

If you need something to take your mind off your troubles for awhile, here's a link to Games.

http://neurotalk.psychcentral.com/forum104.html

Hello Michelle and welcome to our NeuroTalk community. So glad you found us and I see our Kitty has given you some directions. Please make yourself at home and join in anywhere.

Michele576, if you are still here. . .

Look up what is called "Parsonage Turner Syndrome". It goes by many names, the one I prefer is "Neuralgic Amyothrophy". This is one of the more common causes for a fairly rare condition that leads to scapular winging and weakness. There is also a type of muscular dystrophy that can cause winging, but it usually would have started when you were much younger and there are other more obvious signs that a good doctor would not miss.

I have Neuralgic Amyothrophy. I have fairly sever weakness in both arms, pain particularly on my right shoulder that crosses over to my left and leaves me with left sided headaches. I have TOS on my right side that probably is caused by the fact that my right scapula has drooped from lack of muscular support due to long thoracic nerve damage. This can also impact other nerve plexus areas.

I have had problems with my arm not being the right temperature- I mean not a consistent temperature from one place to another. This was seen under an infrared camera as a nice mosaic of colors instead of a uniform warmth.

It is hard to imagine your doctors would not see this, but then again, I had to point it out to my own doctors. Even then they thought I was nuts. How dare someone diagnose themselves on the internet?

Google "scapular winging causes".

What actually causes it? There are many theories. Some types of injections can cause it. Certain types of virus are suspected. It could be an autoimmune disease. It could have a genetic factor too.

I hope you find an answer, if you have not already gotten it.

Welcome, I joined today too. I hope you get the answers you need because it sounds horribly painful.