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Originally Posted by michele576
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
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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