Cervical now was a old past lumbar sufferer

[cavalier]

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

[dshobbies]

Not sure what a TOS is but it doesn't sound good. Another problem to deal with, another puzzle piece that must be put in place.... what a mess. What comes first at this point? What must be corrected before moving on is possible?

Sorry for this complication and hopefully, it will get resolved quickly. My best to you, Dale

[cavalier]

Dale I am sorry TOS means Thoracic Outlet Syndrome - a big name for the fact that everyone has a Thoracic Outlet this is what carries the bloos flow & nerve pathways from the cartod artery down into the arms & chest area. This outlet can get scar tissue or compressed over time - HOWEVER in my case I am one of the rare people who have a EXTRA rib a Cervical rib that only one percent of the worlds population has & this falls in this pathway - so i am MORE crowded than most people & over time - this always tends to cause problems with nerve & compression to the arteries which is what this is doing to me now - I have this on both sides of my spine & it requires this being taken out in 2 different operations. The doc's who do this are typically Thoracic Vascular surgeons but due to the fact that this is not a common surgery - you want a doc who does alot of these under their belt. As alot of complications etc. if you dont have a good one. i have so far alot of pre work ups that show i have the arteries being compressed - i have a couple more tests to do & i want them done ASAP as I have a risk for a clot & anerysm spelling sorry i am tired. So depending on what i find out i will put the one that has the most danger if left untouched 1st - but i am trying to weed thru this & I am talking to doc's around the country on this. Memphis does not have doc's who do much of these.
I have a TOS doc who does alot of these calling me himself this week which is very nice & I had another TOS doc call me last week so far it looks like yes I have this for sure & that this extra rib has to come out - I actually would rather have the ADR Cervical neck surgery as this is a major deal & once recovered have to undergo the other side as both are affected. Once I get all of the final tests & doc's weighed in I will confer with Dr Fenk-Mayer & lay this in front of the doc's & make decisions. I do know when it comes to my neck who i want Dr B. - however with the TOS I am going thru finding who the best are etc. I only want a doc like Dr B & Fenk-Mayer who are willing to address ?'s
Thanks - & all the best to you Jill

[cavalier]

Oh I forgot to mention it causes 4th & 5th digitis numbness & tingling & circulation issues & wrist & hand weakness & neck pain & shoulder pain arm pain so it iis confusing as it can overlap with someone who has neck issues & I have both - so trying to do as much diagnostics to get some guess as to the %'s but not alot of dooc's here know much about it - so thus the need for travel & those who do know the most are the better ones to see.
Jill

[dshobbies]

Jill,

I knew this didn't sound good! I am sorry you have to deal with this on top of your other problems. How far apart are these surgeries? Is it the normal 6 weeks and you're good to go or a more prolonged healing process? After these extra ribs are removed will your anatomy be considered 'normal'? In other words, is this TOS surgery a complete fix or will there always be related health problems?

And then your cervical surgery. Hopefully, after this YEAR of surgeries, you'll feel much better and can get on with the rest of your life.

Please keep us posted, Dale

[cavalier]

LOL - normal - is subjective. Much of this depends on the technique of the surgeon & what I am finding is the techniques for the VARY quite a bit - why I dont know. So that is the trick. Yes about 6 wk's but not sure yet how long before they will do the other side much of this is what I am looking for the Artery studies to tell us more on since both hands are affected. Then the neck is probably what will happen but I am not setting anything in stone til I see the artery studies I need to know they tie into the TOS otherwise I wont be so sure on moving forward.

Thanks Dale.

[cavalier]

Once again as in the past with my lumbar - USA doc's are saying either do no surgery for the neck & do TOS surgery instead, which is a rather complicated & risky surgery or do a 2 level fusion for the neck. Stenum & Dr B both agree in saying ADR 2 level possibly 3 TBD by discogram. I would prefer to have just one USA doc who has seen me in person to agree.
The spine doc's who say fusion are scared due to loss of Lordosis which is normal, when you have loss of disc height intergrity of the discs & also the facets which also wont be perfect if you have the above. You need the height to be restored.
Stenum added that C6/7 is herniated which is not noted on my MRI report which is a important note to me as it would mean the nerve root C8 below would be getting irritated which is what I had wondered about - as that would explain the TRUE TOS arm issues & shoulders & scalanes. Rather than what one USA Spine doc said was the TOS was the issue. The C5/6 disc is prolasped also not mentioned on my MRI - but it all MAKES sense as you cant have moderate stenosis & osteophytes taking place unless you have disc weakened or being lost - I know this from my lumbar - so this wont be going away - since I am narrowed to 7,8.9 mm's & normal foramen is 15 to 20 mm's i will have to address this - I am getting the subclavical axillary arteries & a US Venous Doppler in various positions done this week - so I can be sure the TOS which i believe is a 2ndary that the above doc's are right, has not caused a clot or artery compression as i have 2 arteries compressed in my L hand I just need to be assured this issue is not up higher so i am basically tracing the origins of this. The Artery doc had me do a simple test - one that should be done & it shows definitely there is a issue so tracing this is smart - & something I have wanted to have done - once i have this I can know if i can just do my neck or if i need a arterial repairs 1st.
I am going to try to avoid doing any TOS surgery - but want as i say to be sure I dont need any emergent artery repairs. I think that is prudent & then I can proceed. All about having a plan & hoping you can then put it into motion. One that needs some thought to it based on common sense & understanding of anatomy and i believe in my heart that some of the doc's also understand this as well. My GP pulled out his thick book with the Dermatome map to agree in looking in my saying I feel the C8 nerve roots are being irritated by the C6/7 above & causing true TOS issues due to the time this has gone on. Rather than TOS as a stand alone. He has nothing to gain by giving his input as he does neither surgery but he drew his circles for my MM's as he was thinking it thru - he said the neck needs addressing you are at risk for more damage if you wait - he said TOS surgery is hard & difficult & alot of complications and you still have the neck - he feels as long as we check the arteries out well - the issue is coming from C6/7 irritating the nerve root that is below it. I am willing to bet the farm & am putting my money literally & my life on it. But i need to feel i have addressed the arteries so we dont have something hit me out of left field.
Jill