Update as it is even more complicated -I have TOS & Cervical issues. Been confirmed now by 5 different doc's on the TOS & all say it needs to come out.
I have been having bad circulation issues in my arms & even my legs. It is felt this is due to the TOS & so I have talked to a TOS doc in Colorado this week - he has done over 2,000 TOS surgeries as sadly we dont have anyone who is good in doing this routinely here in town. He asked me about a 1/2 hr of ?'s said I def. have the TOS. I also know from Dr's B & Fenk-Mayer & EVERY doc I have seen besides for my neck I have alot of facet changes & oesteophytes - the facets get this way I was told & it makes perfect sense to me with arthritis etc is due to the loss of disc height she said simply put - this follows the loss of disc height. I am coming to realize I have need for BOTH TOS surgery & for the Neck surgery !
I saw a Arterial doc this week for my circulation as I could see purple blue spots on my arms & across my collar bone. He had me do one simple test & said i DEFINiTELY match the tests i had for arteries being compressed. So I have to do this week one test at the Hosptial a thoracic Aorta Chest CTA & a Carotid CTA & then later this coming week he will do at his office a L Chest & UE & Eval of the subclavical & Axillary artery. So depending on what his tests show will tell me which to put 1st the TOS surgery or the Cervical surgery. IF i have the TOS surgery it will be 2 surgeries one to remove the Extra Cervical rib that less than one percent of the world's population has. It is when someone has one above the 1st rib - have to do only one side at a time so 2 surgeries after you recover from the 1st. Too much risk of clasping a lung a risk with doing just one side at a time. Not a easy surgery to recover from I am told the ADR Cervical surgery would be easier which would make for 3 surgeries. Not a back to back excuse the pun propostion. So hopefully i will know more this week which to put 1st. IF it is the TOS surgery the closest doc who gets people from 5 states around is 7 1/2 hr's away each way. He does 3 to 4 a week & has done hundreds compared to doc's here with one a year done about 3 total. Every one i have told this too of the Nurses who work for the Thoracic Vascular doc's here say the same thing I am thinking go to the one who does the most - they say they would. I smiled & thought yep the same thing as one tries to do with spines if they have a need.
I have relayed all of this to Dr Fenk-Mayer & will update once i get word on the arteries. IT aint fun but there is definitely 2 components to this but it is hard to assign a % to each. I found out one can do a Scalene Block & Percotralis Minor muscle blocks with Xylocaine but what I found out is hardly any one does these. Only one doc here in town who has & he missed twice before getting it right on the 3rd try - my doc says it is so crowded in there you can do significant damage if you miss. The Doc in Knoxville sometimes does them but not routinely. Colorado does them alot & often. I hope i can get some relief soon & things get rolling on which to do 1st. IF the arteries are at risk for a blood clot then I will have to consider the TOS 1st even if i still have a bad neck. But I will lay it in front of the doc's & they should tell me if that thinking is correct. Facet blocks the doc's here say they cant get exact enuf on the neck as opposed to the lumbar. Dr Fenk-Mayer said they could do them but must be a different caliper of expertise.
Meantime I am trying to keep positive even though i am getting impatient & frustrated as tired of not being able to do things with my hands. I have come to find out why the docs here in Memphis just dont know about this stuff for TOS. The Doc in Colorado says no doubt I have TOS. I keep hearing from about 5 doc's now that extra rib needs to come out.
I hate to let the neck go too long but hopefully it will all work out - it has too
Jill
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