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Old 07-09-2009, 04:21 AM
cavalier cavalier is offline
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Join Date: Jun 2009
Location: Memphis
Posts: 43
Default 50 - 50% split between the Spine Specialists

Update - without naming the doc's names - this is such a mixed bag so far.

I have 4 long time spine specialists who say I need at least 2 level ADR for my neck & this should help my arms & the Bilateral TOS -Thoracic Outlet Syndrome. That I have cord compression I do know i have only 7, 8 & 9 mm's in those 3 levels anything under 10 is considered cord compression.
However the other doc's below who read those findings see the MRI differently that the ones above saying there is still enough room.

I have another 4 spine specialists who say dont do the neck at all, including TBI. I wonder if it is because I say I am not as strong in my left arm - but to them I am still strong in their mind for a woman - they just dont know what I used to have to compare it too. I dunno that is my guess. I could lift easily a 20 lb dog & carry it with one hand & hold him for a long time Like hours & not feel it at all in the neck or the arm in feeling weak or tired. Now I cant without 2 arms & cant hold him for any length of time - have to set down fast. My L hand is atrophying & visibly smaller & lost muscle in the forearm. That is my worst but it is my dom. hand the right is now following behind as i am using that more in acting up too.

Have one spine specialst who says the neck needs a fusion & does not understand TOS but says the TOS and the neck are 2 separate issues.
Have 2 Spine Specialists who say do NO surgery to the neck at this time - one says go see a Thoracic doc & have them decide on the TOS issue & the other says get that extra Cervical Rib removed that I have 0 that only 1% of the world's population has. The 1st one in this group I showed the arteries & issues with the arms and said he does not know anything about that.
Have a 4th in this group who says remove the ulnar nerve - I said how will this help the arteries that are being compressed or the TOS or my arms he said it wont ? He does not know that in some bad cases of TOS the ulnar nerve get compressed so that is not getting for sure the cause of the problem.

Problem is the neck & arms would be hurting whether it is TOS alone or the neck alone & it could be 2 separate issues which means that is why they both together make it a bugger.

Thoracic doc's I have seen one - he felt I def. have TOS but felt it was coming from the neck once he saw the MRI. Said see a spine specialsts now that I have gotten one here in town who said go back to the Thoracic doc That Thoracic Doc said come back in ready now to do this surgery. I said i needed more than just one spine doc's opinion & he got that so is waiting but it is still split right down the middle with the spine doc's. So I guess the answer is see more Thoracic Cardio Specialists than the one for their input now is all i can come up with - just what I want to do see more doc's.

All of the spine doc's & my GP say they dont like this surgery for the TOS alot of risks & could be made worse or no better.

I saw the Artery specialist who says the compression is not coming from the cervical rib when the arm is by my side. Does not mean I dont have Neurogenic TOS however.

My GP sent me a name of a new Professor here in town a Thoracic Cardio specialist he said might as well get his opinion - i called before I left town - his nurse said he would be willing to look at ALL of my reports & CD's including MRI of my neck & work up so far for the TOS & render his opinion if he can help me or not. So copying all of the paperwork & discs & getting to him tommorrow.

Dr Sanders the TOS specialist in CO. called me and asked me questions he said I def. have neurogenic TOS but I never got a chance to tell him of my neck findings. I could only answer what he asked.

There is a Dr Thompson a Professor up in St Louis who is well versed on TOS & surgery and he has Spine Neuros he can confer with & Orthos there at the school. There is also a Thoracic Cardio at UTK in Knoxvl, but that is further away by 3 hr's, then St Louis is for us. Dr Thompson has more years in working with this he odds or risk for things going bad was a bit lower than the Knoxvl doc's.

It seems the Thoracic doc's know to rule in or out the cervical but many of the 3 out of the 4 spine doc's I listed who say dont do surgery on the neck know nothing about TOS - you would think they would, since the symptoms overlap so much.

So this is where i am at - I feel as if i am spinning circles - I feel i have enuf spine doc's even though 50 50 split between them - all I can think of is then get more than the one Thoracic Cardio doc's opinion & see if that sheds more light on this somehow. I thought about seeing a neurologist as they have nothing to gain either way as they dont do surgery but will they know much about TOS ? I would have to call to ask prior to making a appointmt.

Jill
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