50 - 50% split between the Spine Specialists

[cavalier]

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

[dshobbies]

Jill,

If we get the same run-around while only dealing with spinal issues, it's easy to imagine what you must be going through.

However, if TOS affects only 1% of the population, it's easier to understand how most spine doctors aren't that familiar with it. It sounds like its own specialty or at least, a sub specialty. I would think it next to impossible to find a doctor who is extremely well versed in both cervical herniations/nerve damage and TOS/nerve damage and able to differentiate the two. But if you're dealing with incompetence, that's a different issue.

I'm sure you have your own opinion as to which is more severe and causing your worst symptoms. Since you're getting such varied opinions, what is your gut telling you? Everything may be culpable but since you can only do one surgery at a time with healing time inbetween, you may just have to choose yourself. And from your description of your symptoms, I would think the sooner the better.

My best to you, Dale

[sk8ter]

Dr. Thompson in St. Louis is the best in the country where you are. i heard he is amazing. I would go get his opinion. He will be speaking at the first TOS conference in October.

[cavalier]

Hey Dale - I NEED to clarify something TOS is a fairly common condition - just my having a extra CERVICAL rib is what only less than 1 % of the population has. I am seeing Dr Thompson who is a Thoracic Cardio specialist on the 22nd next week. I am getting tired of traveling in trying to unravel this all. The TOS is real for me but many TOS patients occur the articles state due to the neck being injured or trauma. Even having the extra Cervical Ribs for them to become a issue is caused by the neck I have read. I am hoping i can get fruther diagnostics up in St Louis to wade thru this mess as the spine specialists are split down the middle on fixing my neck - I would feel stronger about them being split in fixkign the neck - but only 2 have seen me in person & those 2 both have said no to fixing the neck right now - the other 4 looking at the same MRI but have not seen me in person yet all have said fix the neck.
Not sleeping well & having my arms in pain constantly is getting annoying. I also realize I am not the only one having problems. Yes I know Dr T in St Louis which is about 5 hr's each way from us - is organizing this conference - his receptionist has been pretty amazing & compassionate so it bodes well for him. Have hear d good things about him but this surgery even with the best is a very iffy outcome. Articles I read indicate over time any improvement can deteriorate & they feel that could be attributed to further decline of the neck. I have to feel I am NOT the 1st one to have both Cervical Abnormal Findings & TOS but I feel or hope it will take the Thoracic Doc's to help unravel this in what they feel is the cause. I have Dr T's questionaire filled out it is pretty comprehensive & in looking at the tests I have completed some here but it is telling as there are more he can run up there that so far have not been requested down here yet so I am hoping to get down the bottom of this soon ! The PROBLEM with this is BOTH the neck for my levels & TOS the symptoms overlap so a patient AND a doc could easily be fooled by symptoms. One of my fears is I will have the wrong surgery & not be any better off. Dr Ninan is a Thoracic Cardio Vascular Professor here in Memphis like Dr T just he does not normally do TOS surgeries - he offered to look at all of my testing & wanted to see CD's & I am hoping he will get back to me - this week. He is pretty busy though but will be interesting as he should not have a vested interest if you get my drift in saying either direction. He just finds the case interesting and is trying to help. I guess i feell I need to get more than one Thoracic Doc's opinion - I have Dr R. Sanders in Co who did a interview with me over the phone but has not looked at any testing & said I have TOS, & Dr Garrett knows i have TOS but felt it was coming from the neck why he sent me to Dr Foley here in town but Foley said the 2 levels have wear but remove the rib. I hate to start chuking body parts without some diagnostics. Either discogram for the neck or tests for the TOS I almost think both - May sound crazy but I need to be thorough on this one. Jill

[cavalier]

Just got back home from seeing a doc in St Louis very tired, I am seeing doc’s for a injury I did a year ago that didn’t heal quite right. Dr T thinks I tore the pec minor & maybe the scalenes too when I broke my rib based on how I described the vast areas of swelling I had - which I thought was pretty far for the rib to affect my shoulder line etc. so I tend to agree. He said was no way for them to see that on imaging. Once those healed they were tighter & thicker & more scarred so causing issues now & over time getting worse not better.

I had some diagnostics done there by injection with lidocaine into my chest wall muscles to be sure which one is causing the issue. Long story. But showed positively this is causing the issue. My back of my neck got better & the headache was gone for this time period. Not supposed to give long term relief but for determining the source. Scalene & Pec minor in the left side only even though I have both sides due to worry of injury to the frenic nerve - they do only your worst 1st. I met the PT guy there too - think his name was Mark but not totally sure have his card.

If I proceed with surgery 5 days in the hosp in St Louis long ways from my home & dogs & the another 5 days in a hotel close by get the drain out on the 7th day - complications or things can come up & he said wants me in the area so he can address this as he says they have seen it all & doc’s down here or in places where they don’t have a TOS expert - they can be floundering in trying to help but puts you at more risk. Hub would be there for the 1st couple of days but cant be gone for the whole 10 days & I am worried about my dogs a long time to be gone. Don’t have any kids who live here any more so need to talk to them I don’t want to board my dogs - Axel really mourned & was not happy when I was gone. He was really happy to see me they all were but he & then Augie were the happiest - but especially Axel he kept hugging me putting his arms around me.

I would love to have him in the hotel with me just keep one of the dogs the one hardest hit by my absence be so healing for me too -so a lot to try to piece together. This is only doing my worst side my left 1st hoping I can manage for my right to not need the surgery there. His odds are 87 % I will be better & only 1% chance made worse. Doc in Knxvl, Tn actually a tad further from us here than St Louis, who does a lot of these would have me in the hosp for 2 to 3 days & can travel someone else driving on the 3rd day home, BUT his odds are less than Dr T's. Deal is if I got into trouble here coming home sooner, I am even further away distance wise from him then St Louis. I told Dr T. I still wanted to talk to him. I am so exhausted to have made the drive but said I had too -

I was to see that doc today in Knoxvl but a call came in on Thurs that he was called out of town for a personal family emergency. I sort of want to see him just to be sure he does not feel I could not be helped by conservative measures. As I dont want to wonder or if anything would be different. But at any rate that got delayed for now. His stats are not as high as Dr T's - Dr T said only 1 % chance I would be made worse 87% odds I would be better. This other doc in Knoxvl has not been doing them as long but is a TOS expert - he said 80% chance improved,15% odds i would be WORSE & 5% chance no better. More to see if the technique & surgery would be the same offering or what.



I still wonder if Prolotherapy could not be injected into those 2 muscles? I am going to call around to one in Nashvl to find out - it could be due to that being so close to the frenal nerve that controls breathing for the lungs - they may not want too. The injections were done by guided imaging Cant think how to spell - floroscopy. The doc in St Louis is VERY good & I have no doubt is VERY vested in TOS in helping people - he introduced me to one patient who had surgery once - did VERY well got back to work working 12 hr’s a day lifting patients she is a nurse & sole provider for her kids - she got scar tissue & Dr T had to go back in to relieve that he reused the same scar area I saw it - to go back in again, she is now one month out from clearing out the scar tissue & is doing well. They tried other things 1st she said for about 6 mo’s from having to re-operate but she said I got to talk to her privately he is VERY good & the only doc she would have touch her. He gave me his direct cell # when we left I almost fell on the floor.

The one doc here does not do anything to the muscles only removes the rib but I do know AFTER these 2 lidocaine blocks my problems are in these muscles contracting down on my nerves so his operation here would not completely resolve my issue. Dr T feels I tore these muscles when I broke my one rib & when they healed got thicker from the tears & scarred causing the nerve compression now I asked if only those 2 muscles could be cared for & leave the ribs but he feels it may not do the complete job but right now they are still in there - but it only sort of froze the feeling of the compression right now, only temporary but def. showed this as being the source of my trouble. They can do Botox injections that give about 3 mo’s relief but not a permanent fix & each time takes more to do the job.



This doc in St Louis has done a Cardinal’s coach who pitches balls to the players is back doing this same job again, a Tiger’s ball player & a ballerina whose career was ruined all had this TOS & are back at their jobs. Plus others. I also met someone who had to have her surgery redone in the sense that she got scar tissue - so I felt he was not withholding anything & left us alone to talk. That is pretty darn good in my book - she said she got complete relief but she went back to working FT doing 12 hr's a day & is a nurse lifting patients is a sole provider so felt she needed to do some catch up she then ran into trouble some time after that - that is the thing is feeling good I have already read any of us must still take it slow & easy - overdoing can be a bad thing. BUT the good news is after he tried some conservative means 1st to see if it would help her he then opened up & found the scar tissue - she would have only gotten worse & no better if she had a doc who ignored this. I saw the scar amazing he was able to go back in on the same scar she had - looked pretty darn good for only being one month out from having this scar tissue removed. She could not say anything but good words for how he cares for his patients. For me the one of the hurdles is being away from home for 10 days - that is a long time. I get why he likes to play it safe if one gets into trouble at a remote place he is not as accessible for them as having them stay in the area. Overall a good visit, I told them to be working on the insurance to see what they say as I was told this could take a bit to get approved. I have to hope that I will be doing the right thing. The injections were good confirmation. In the meantime I figure ask about Prolotherapy if nothing else I could do the neck muscles & the outer shoulder muscles to try to help those. I still hate the idea of loosing those 2 muscles and 2 ribs so I must be sure I have looked at all options. He said the operation is hard & slow will feel like I got hit by a mac truck. I have no doubt on that score.

I just need to be sure one thing does not lead to another as that is how I got in this spot to begin with my simple break was more than just a simple break it led to other issues especially as nothing was done to address them for some time.

At any rate, this is long enuf -

Jill