Mixed opinions - Back home from TBI -

[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.

I have another 4 spine specialsts 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 loer than the Knoxvil 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 betweeen 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 nuerologist 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

[KBear]

Wow, I wish I had a 'magic' answer; but I don't. Will be praying for God to guide your descion.

[RedStang]

Wow, I wish I had a 'magic' answer; but I don't. Will be praying for God to guide your descion.

I will second that.

[Cindylou]

Jill, I wonder if you are possibly looking at two separate surgeries? One to open the thoracic outlet and the other adr's for the neck? I would definitely get that other TOS doc's opinion. Maybe it will come down to addressing the most problematic area first, which appears to be your TOS, then who knows? Maybe you won't have to do any other surgery if it takes away all your symptoms? Just my humble opinion. I applaude you for slowly unraveling a spreadsheet of confusion out of your spine issues!! You'll get there. Hang in. Sounds like you are almost there.

[Justin]

Jill, I wonder if you are possibly looking at two separate surgeries? One to open the thoracic outlet and the other adr's for the neck?

I'm thinking along these lines as well. The spine surgeons are recommending to fix your neck, while the TOS specialists are recommending that you address the TOS.

Here's the reason why in my opinion: the spine surgeons you are seeing don't see TOS patients that much, so they are recommending what they know how to do--spine surgery. The TOS is best treated by an expert that deals with upper extremity nerve injuries. I think it is hard to get a "straightforward" answer on what to do because the two problems you are dealing with--your neck and the TOS--are currently intertwined in your symptoms.

Honestly, I think you'll be hard pressed to find someone that is an "expert" in TOS and that will know how to address your cervical spine surgically.

In my opinion, I think you will have to have individual specialists treat your TOS and your neck; unless, there is a surgeon that is well versed in both.

Good luck and I wish you well in your travels. Things will fall in place soon!

[cavalier]

I VERY much appreciate the support & any advice. What keeps going thru my head is the one statement i found written by Dr Richard Sanders a big TOS expert & a Thoracic Cardio surgeon he has performed over 2,000 of these surgeries himself, now he only assists with another thoracic cardio surgeon. Maybe due to his age now or semi retired, a older gentleman. In his writeups on TOS - he says this -
Even people with Cervical Ribs who are one % of the world's population - 80% of the T.O.S in becoming a issue is caused by the neck going a wry.

I felt like stating that above to some of the Spine doc's who said no Cervical surgery for me - but I felt what good would it do - I dont think they would have taken any closer look or changed their opinion. And if they dont know much about TOS then ... If i go to the net my symptoms match TOS & they match Cervical compression and disc issues - I match the deratome map for my arms at C56, C67 & C45 is questionable by some of the docs. Some of the spine doc's who say they know nothing about TOS would avoid doing Thoracic outlet surgery period and my GP also says the neck surgery is alot more straight forward and less risks. He thinks the 2 are connected. Will have to see what other TOS doc's can advise me is all & hope it adds some clarity. In the meantime, I wish my telling myself that these issues are not that bad that I could just wave a wand & make it all go away. I wake up to the feeling of someone having used a baseball bat on the back of my neck and headaches and that is if I can get any sleep due to the neck not getting comfortable and the arms. I just wish it was more straightforward. My hubby thinks and I have to agree I HIGHLY doubt I am the 1st case like this so finding those however it seems some of them have tried one surgery over the other so not exactly true text book so far that i have found. Just some of these doc's dont seem to put it together or put any research in. It is more of the next attitude 5 min's or less if cant get it sorted out then they move to the next patient. I was a bit surprised at how fast TBI was yesterday, compared to how they were during the trials for lumbar ADR.

Jill

[cavalier]

I need to correct one thing I wrote above - I was not clear - the symptoms for Cervical DDD & compression EXACTLY can match people who ONLY have TOS ! So it is hard to separate which is the Bigger cause of these issues & yes doc's tend to treat with what they know best. But it seems the Thoracic Cardio Doc's due to the fact that they are trained to know the neck can be the source - some are actually able to read the Cervical MRI not just the reports - so I found that interesting. The reverse is not always the case with the spine doc's.

I will see what this new UT Professor Dr Nihan has to say who have offered and wants to see EVERY test I have had done so far not just the reports but CD's etc. I was a bit surprised that he is willing to do this and the Professor the one in St Louis also wants to try to sort thru this so will see. Perhaps it is due to the fact they are teachers they tend to be the types to be used to doing more research. I have read of people who have TOS surgery who still have the issue and vice versa people who had the neck surgery but still remained with the issue.
Jill

[cavalier]

Thoracic outlet syndrome (TOS) involves compression,* injury*, or irritation to the neurovascular structures at the root of the neck or *upper thoracic region*, bounded by the anterior and middle scalenes; between the clavicle and first rib (with possible enlargement/hypertrophy of the subclavius); or beneath the pectoralis minor muscle. Some authors define the thoracic outlet as an opening bordered by the first rib laterally, the vertebral column medially, and the claviculomanubrial complex anteriorly. The syndrome of compression at this site could be primarily neurologic, involving the brachial plexus, most often the lower trunk or medial cord; alternatively, it could involve compression of the subclavian artery and/or vein.1,2 Thrombosis, embolus, or aneurysm of these vessels is a less likely possibility.
Many authors have discovered accessory cervical ribs associated with TOS3 ; however, they have noted tough fibrous bands coming off the accessory ribs that are believed to be more responsible for the pathology. There have even been reports of bony fusion of variant cervical ribs, resulting in bifid ribs with attached fibrous bands.4 The bands cause tethering of the brachial plexus, which results in traction and, therefore, symptoms. Other authors report compression or irritation of the neurovascular bundle more distally under the pectoralis minor muscle or from anterior displacement of the humeral head.
Additionally, clavicle fractures can result in plexopathy from expanding hematomas or pseudoaneurysms that compress the plexus, with variable latent periods following the fracture. Delayed onset of symptoms may suggest exuberant callus from the healing fracture site. Nonunion of the fracture site also can result in direct compression by the lateral fragment, which is pulled inferiorly.
Thoracic outlet syndrome (TOS) most likely has multiple causes. The primary cause is believed to be mechanical or postural. Stress, depression, overuse, and habit all can lead to the forward head, droopy shoulder, and collapsed chest posture that allows the thoracic outlet to narrow and compress the neurovascular structures (see image below and Image 1).5 Accessory ribs or fibrous bands also may be present, predisposing the site to narrowing and compression. Large breasts have been implicated
*Trauma can lead to decompensation or shifting of structures in the shoulder and chest wall, leading to symptom onset.* - Like my breaking the 5th rib - I kept saying I was fine til this happened & when this happened is when this all started in !!! I had minor symptoms off & on prior to this with my wrist only but no arm pain & not this neck pain - til i broke this rib !
This started right after I broke my 5th rib - not being able to raise my arms anymore, the headaches & pain in the left arm & now the right after I broke my 5th rib last July. Doc's said including the Vascular doc - they didn't get how that would be involved. I said it must have upset something I could only thik perhaps posture after that but it is more than that ! Rich from the ADR forum sent me some links - this one -
www.bodymindresources.com/carpalthoracic/thoracictheory.htm It is FINALLY clear now - I kept thinking cause & affect - I kept thinking this is when I could not breathe as deeply due to the broken rib so yes I think I have been able now to verify the answer !! ALSO some VERY good info under Dr Ellis also in your links and the bodymind resource link also gave me much better ways to work on this - I even found where it said the corner stretch most PT therapists offer is WAY too much to start off with - it actually flares you up EVEN more ! - which it did me! I have spent literally tons of hours on the net trying to read different info & still had not come across these 2 sites - some of the others yes. It is logical & I can follow the chain of events I kept saying no that break of the rib over my heart meant the start of this find a direct link to this & I then can feel I have found my answer. It leads me directly to the TOS as the primary problem - the neck while it maybe a issue down the road tends to make me feel since it was asymptomatic BEFORE I broke my rib - that fixing the TOS problem the neck should hold for a bit longer just keep tabs on it now. I dont know what to say - I am so GRATEFUL. I also have proof of my lungs showing they are now shallower on X-ray than they were before the breaking of this rib so it makes perfect sense I kept thinking this even should be able to pinpoint & now it does it all lines up ! The doc's I have seen so far didn't get the importance but to me it is when this ALL changed & so it was significant - now I have the proof.
From the link above -

What causes the tensions that create Thoracic Outlet Syndrome?

Well one thing worth observing is that all three of those culprit muscles have one thing in common. Each of them attaches to the rib cage. This tells me that *the structural integrity of the rib cage is a key factor*. Any client I have ever had with symptoms of Thoracic Outlet Syndrome had *collapsed the front of their rib cage and was breathing very shallowly.* One must also note that the structure of the rib cage determines the structure of the arms, head and neck since these structures must sit on top if the rib cage. *When the front of the rib cage collapses, the arms, head and neck roll forward off of it. This shortens the pectoralis minor, subclavius, and puts the anterior scalene in a awkward position.*

So there it is - I cant tell you how simple this is & yet until I could find a medical article to show support of that it seemed like only a logical guess.

www.doctorellis.com Gives specific treatments one can try & some med'
s & when you need surgery - it is pretty good. Better than anything i have read or been told so far - so finally Jill

I feel so relieved - J

[Justin]

Hi Jill,

I'm glad you found some research to help understand TOS. I'm surprised none of your doctors mentioned the anterior scalenes, subclavius, pectoralis minor, etc. as these are well known to be implicated in TOS. I guess they didn't mention it to you as it's an understood in the pathophysiology of TOS.

What's your next plan of attack?

[Justin]

BTW...I mentioned that you might need two surgeons to address these separate issues (TOS and advanced degeneration of your cervical spine). The TOS is a beast on its own...I can't remember what level of degeneration your cervical spine now shows?

I wish you the very best Jill--you've struggled for too long. Let me know if there is anything I can do to help!