Anyone have these symptoms please help
 

Hello,

I have had a total of 4 shoulder operations on the Left side due to misdiagnoses and a chiropractor manipulation...

2009 - Distal Clavicle Resection due to being at the time a competitive bodybuilder
03/2010 - manipulated by a chiropractor and experience the worst pain in my anter shoulder/chest area

03/2010-12/2010 - began experiencing weird symptoms in my shoulder - senesitive to touch over deltoid and popping in my shoulder with any movement. Hand and shoulder would cramp up and tingle

03/2011 - Another Distal Clavicle Resction and labrum repair - was believed the popping was coming from the bones still hitting each other

04/2011 - 2013 - Saw three TOS doctors and many shoulder doctors.My clavicle was diagnosed to be lax on both sides due to the chiropractor manipulation. TOS doctors said to stable Distal Clavicle. Symptoms of nerves getting caught with deep breaths, weird feeling over lateral and anterior shoulder, when walking or moving my arm nerves get caught below clavicle, neck balloons up along with chest during breathing

01/2013 - underwent surgery to stabalize distal clavicle AC Reconstruction

Now I am being seen by one of the best TOS doctors and shoulder doctors.

The TOS doctor isnt 100 % certain my sx's are from TOS because they are not typical but he is willing to do the operation. My shoulder doctor recognizes my SC joint is Lax as well and needs to be surgically repaired because I cant deal with the pain.

My dilema is I have the nerve issue and my other side of my clavicle issue. The shoulder doctor is 85% certain this will help my discomfort in that joint but not certain about the nerve issues.

Here are my symptoms that I have no other idea that could be but TOS

1) Ripping and tearing of my nerves below my clavicle around the deltopectoral groove area when walking, runing or moving my arm in flexion or extension. when nerves get caught and rip I can feel the sensation tear below the clavicle and can go down into bicep, shoulder, hand or forearm or palm of hand
2) Nerves getting caught and ballooning of my chest and neck during deep breathing - when nerves get caught and rip I can feel the sensation tear below the clavicle and can go down into bicep, shoulder, hand or forearm
3) Arm gets fatigued and tiredsome when hanging next to my side or doing anything
4) Ballooning (blowing up) of my chest during retraction of my shoulder
5) Tingling in all fingers
6) When abducting or raising my arm to the side or in front I get popping sensation above/below my clavicle - feels like scalene muscles popping over first rib or clavicle region
7) Scapula wings
8) When shrugging shoulders my nerves rip and tear when I let my shoulder down
9) Neck muscles (Scalenes) push up against clavicle more so than non affected side, especially when sitting or arms rested on something

Things that help
1) Protracting shoulder
2) Laying down on back

I used to be a competive bodybuilder and have undergone 3 shoulder surgeries from a chiropractor manipulation and have also undergone bilateral ulnar nerve transpositions of which each one had to be redone twice. So overall I have undergone 9 surgeries. I am exhausted and tired!

Has anyone experienced this ripping and tearing of nerves and the feeling of them getting caught with arm movements and with deep breathing

What do you mean by nerve ripping and tearing?

Who is the TOS/Shoulder specialist?

By ripping and tearing I mean if I walk or run I can literally feel the nerves getting caught in something and then it feels like they are ripping through my muscles or skin and then shooting down my arm... Like it gets caught somewhere in my chest area and then it will get caught and then tearring like a ripping feeling.

When I take a deep breath in I can push below my clavicle on some sort of what feels to be like a muscle mass and then it pops superior above clavicle - when this happens though there is also always tearing ripping in my arm -- all docs say there is nothing abnormal in my MRIS and CT scans as far as muscles

I can also feel in between the deltopectoral groove on that side and actaully feel the nerves unlike my non affected side I just feel muscle (like the pectoral muscle) - however on my last shoulder surgery the doctor checked for a pec or deltoid tear and it was negative.

The TOS doctor is Dr. Annest in Colorado - I feel very confident in him as a surgeon just my symptoms are so unique that its ahrd to say if this is the surgery I need

Also my vein (cephalic vein) the one that goes in between your chest and shoulder bulges out all the time - bulges through my skin like there is no fascia keeping it in place --is this common of TOS

Please read my thread before going through with TOS surgery with anyone also especially if you are in any way unsure this is the surgery you need, Annest and Sanders are working on a study right now and this is in IMO more of a concern to them than their patients these days.

Parbie: What do you mean as far as your thread and if being unsure - was annest unsure about your diagnosis of having TOS... I have always found the doctors in Colorado (shoulder and TOS) the upmost polite, time giving, and compassionate out of all doctors I have seen - and I have seen many due to my shoulder, elbow and now possible TOS

Also what study are your talking about that Sanders and Annest are working on - I could not find it in your thread - could you please send me this link?

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Also has anyone had these sx's??? The tearing of nerves when walking etc almost makes me thing I do not have TOS and need to get my other side of my clavicle stablaized because maybe it is rubbing against the nerves due to it movign to far posterior at the distal side since the SC joint is loose moving anteriorly - My shoulder doc cant gaurantee me this stabalization procedure will help but he thinks it has a chance as SC injuries cause a varying type of symptoms.

I get a lump underneath my left clavicle which is my bad TOS side. One of my past chiros identified it as my first rib being rotated anteriorly. He would shove it back in.

I now shove it in myself every day with a strong exhalation while I do so. Prior to that I press my rib down from the top side, from the side of the neck. Somewhat like this: http://www.youtube.com/watch?v=qlTzS7PUaZc

But of course, done very differently given that I'm doing it on myself.

I don't have your other symptoms but thought I would share the notes above.

Good luck.

By unsure I meant IMO never have a surgery if a DR especially 2 well known TOS specialists cannot definitively diagnose you with TOS however they still would do your surgery. That just doesn't sit right with me.

As far as the study, it is something they are working on, not published yet but it seems right now their focus is more on research and less on patient care. I mentioned my thread because it shows I went through a ton of doctors before I found out about TOS and then a ton of surgeons before I CHOSE one and flew to Denver from NYC just to have mine done by Annest and Sanders due to their experience and especially because Annest was very caring when he spoke to me and sounded genuine. BUT....right after my surgery, he left the state and I was forced to follow up with Sanders who did not perform the op, he is retired. Annest also did not do what he said he would do during my surgery and barely addressed that. Then during my follow up, I flew back to see him because I was not doing well at all, sx were worse and got new sx..he did not address this, he forgot he didn't remove my c-rib, he had one concern only, which was if my long thoracic nerve that he injured during my surgery was healed and he said it is was and went on and on about how ecstatic he was then he said he can't do anything more to help me and I need to back to pain mgmt. By the way, my long thoracic nerve has not healed, he was wrong about that, he rushed my entire appt. I do love his assistant Kathy though, she has always been nothing but super nice but she is not the Dr you are letting cut into you and the Dr you need to follow up with and the Dr who should remember you especially if he botched your surgery....

I beleive that certain doctors do their preferred surgery or procedures on patients just to support their theory or research. Dr. Sanders research shows he believes that many cases of TOS are actually pec minor syndrome and therefore he was one of the only dr's to test the pec minor and did many pec minor tenomoties to prove his theory. I am assuming his protege Dr. Annest is following in his footsteps. Not to say that many MIGHT have pec minor involvement but not everyone especially if you have a cervical rib. It is also true that Dr. Thompson has just come up with 2 very beleivable studies that show that PM is the culprit in many cases but he also does other surgeries based on what he thinks the patient needs.And it looks like he does the most at once of any surgeons.

Dr Ahn is another one that recommends the angiogram and angioplasty to all his patients as his theory is he can tell where the compression is coming from.It may be a good test but he is the only one doing this for diagnostic purposes. With TOS everyone is different so a cookie cutter approach will never work. All the surgeons in L.A. only do the Transaxial Rib resection for all cases-you cant even get a PM MAC test here. Its too bad that this happens
but explains why many people have to travel to see the right surgeon, and even then it may not be the right decision. I'm so sorry Parbie that this has happened to you-xo JKL

Thank you Jkl, I appreciate it. I agree with everything you said above.I still believe I have pec minor issues but the tenetomy might not have been the way to go. Sanders did the same thing he def has a cookie cutter approach where he has to do a Scalene block and pec minor block and a new EMG done on everyone. I am lucky about the EMG though, it showed I have positive results on both sides. Kind of similar to Dr Lee situation, wasted my time yet I found out I have the subclavian artery being compressed with the ultrasound he requires for everyone walking through his doors. However I am sure I would have gotten that done with Donahue anyway, only thing is I found that out ahead of time and it will help me (and scare me blah) and definitely help Donahue during my visit with him.