Neurogenic TOS
 

Saw my neurologist today and he finally agreed that I could have TOS and wants me to see a "shoulder specialist" with knowledge of TOS.....I was curious to know if neurogenic TOS would show a positive sign in the different pulse tests (I believe they are called Addison and wright tests). Or if they were inconclusive in determining NTOS. Also in regards to the different surgeries to correct TOS pec minor releases, first rib resection, or scalene release? I believe is the last one...what are, if any, permanent limitations with these surgeries? Any loss of or limited arm function? Or any things you shouldn't do due to the structural difference in that area? Right now I can't elevate my arm or shoulder without my hand completely locking up ( unable to open fingers while elevated) and experiencing pain burning sensation in the shoulder and scapula. Has anyone had loss of function that returned after any of these surgeries and to what extent? Been bounced from doctor to doctor for the last year with all normal tests (Emg w/ulnar nerve entrapment didn't explain my symptoms, mri of neck and brachial plexus, mri of shoulder). Been suspecting TOS after a friend who's a doctor mentioned it and I researched it. Crazy that all these people I have seen and not a whisper of TOS. When I started learning of the symptoms it was like a checklist of my problems. I'm thrilled to finally have my Neuro finally recommend seeing a specialist because my case is comp and without the recommendation they will never approve the visit. Good luck to everyone going through this because it does consume your life and drag you down. This site has helped so much for advice and just venting :)

You and i have very similar symptoms. I haven't had the surgery yet, but mine is scheduled with dr pearl in Dallas on 12/4. Sounds like your neurologist isn't familiar with TOS. I would recommend You see a vascular surgeon who has done many rib resections. (Theres a list in this forum.) they too can diagnose you. I wasted a lot of time and $ going to different neurologists.

Thanks for the reply.....yeah I am in the process now of trying to find the right doctor. My Neuro made one recommendation but I am gonna shop around. Good luck with the surgery hope all goes well. When u said similar symptoms do u have a problem with opening closing hand or controlling finger function? It seems like a rare thing to me, most people I have read about complain of pain,swelling,color change in the hands.

I have problems gripping and with motor skills using my hand: buttoning buttons, zipping zippers, my handwriting is ridiculous. I never had pain in my hands - Just numbness and weakness. I had pain in my wrists, shoulders, neck, and arms though. I went to two neurologists who told me opposite things. They both agreed that I have TOS, but one told me to live on pain meds, and the other one told me I was atrophying, and I needed to do something (surgery.) I have neurogenic TOS, but my vascular surgeon told me I don't have any arterial or venous blockages, but if I continue to go untreated I could develop them.
I started this TOS journey in August (after I was misdiagnosed and misoperated on for carpal tunnel) I finally have peace knowing my plan of action. My advice: Do what you need to do until you find peace. Advice I was given and what works: go with your gut.

Yeah we definitely do have similar symptoms. Recently I noticed I have been dropping things a lot, and having trouble with any two finger grabbing. And as far as the pain goes that's never ending. Well I'm glad your on he right track and have a plan of action. My neurologist finally said it could be TOS but suggested I see a shoulder specialist to find out. It seems like the mystery syndrome that no one knows about. So I'm gonna see a vascular surgeon hopefully. Good luck and thanks for the reply.

Hi. Just wanted to wish you both good luck! I have finally been diagnosed with NTOS and pectoralis minor syndrome. I have surgery scheduled on Nov 29. can't believe I'm actually excited (and scared to to death) but I am looking forward to some relief! It has been a long and painful road. I am a rural carrier in Florida and this has made it impossible to continue working. I have bilateral ntos and crossing my fingers that I do not need surgery on the right also. Keep looking for answers....don't give up! I wish you the best.

Thanks tsquaw. Best of luck with surgery on the 29th. My grandpa was a rural carrier. That's grueling work. I'm counting down until my surgery. The pain is so horrific today. 27 days until my surgery. We'll get there. It has to get better.

Best of luck to everyone with surgery scheduled. I had my surgery on 9/18. So far so good. I'm told its a 6 month recovery until ur at ur best. I have R sided NTOS. I also have trouble with my fingers. Always had. Numbness pain tingling small task and dropping of things. I do have a new symptom of my fingers constantly twitching. I hope it resolves soon. God Bless and keep searching. :grouphug:

Hey thanks for the well wishes tsq...I hope your surgery goes well and gives you some relief. I know how the journey through daily pain can effect your life and your workplace. Especially if your rural carrier! I realized that you do have to keep looking for answers, because it seems like getting a diagnosis of any form of TOS is a difficult journey. And even after your diagnosis you have another journey in finding the right surgeon and treatment that you feel is right for you. So once again good luck with your surgery and I wish you the best and a speedy recovery.

Questions about surgery
 

Hey everyone....my workers comp doctor finally gave me the authorization to go see a vascular surgeon, and finally agreed that i have Thoracic Outlet Syndrome. I have started my search of doctors and narrowed it down to some in state, and if i have to, some out of state doctors. I live in NY close to NYC and the only problem i have ran into so far is that a lot of the doctors don't accept workers comp cases. I am waiting for a call back from Dr Darren Schneider from New York Presbyterian to find out if he will accept my case. I chose him based on some good reviews. I was just curious about the surgeries to correct TOS. I know there are different procedures based on your specific diagnosis, but i was just wondering about limitations after these surgeries. I dont mean right after surgery, because i'm sure there are many limitations at that point. I am talking more about long term. I am in the law enforcement field, and in my line of work you have to be prepared to use all of your limbs at any time. Right now i'm completely limited to my duties and am sitting at a desk....which often aggravates my symptoms more! With a surgery such as a rib resection or when they cut part of your pec muscle.....does this limit your arm function or range of motion permanently? After the surgery is that area now more susceptible to injury due to the change of overall structure? (like a direct blow to the clavicle/Shoulder area, or a fall impacting that area). These are all things i'm sure my doctor could answer for me eventually....i would just love to hear some first hand accounts. After my surgery my jobs doctors are going to evaluate me in order to determine if i am capable of returning to work in a full capacity. This is why i ask other people who have had any of these surgeries their limitations. Thanks for your help and support.

So happy to hear that you are getting some where with your treatment. it is so hard to find doctors that except workmans comp. the main reason I chose not to go that route. I'm interested in the same answers....I'm having rib removal and also removal of PDF minor muscle. my doctor told me that I will have to do aggressive therapy to get the strength back in my arm. he said the pec minor muscle is responsible for the lifting with the arm stretched in front of you and is also the muscle used in pushing. it has been so long since I've used my left arm I'm sure I'll have a lot of work to do but I am ready! Can't wait to get my life back! You have a very dangerous job. my son in law and my husband both work for the sheriff's dept. I'm sending prayers out to y'all. please keep the updates coming.

Good luck! Who is doing your surgery? It seems there are not too many drs that do the pec minor surgery. How did they determine that the pm is involved?
I have those symptoms too, but my beleif is that the rib is pushing on the pm and that is what is causing the numbness.

Hey tsq thanks again for your response. Yeah workmans comp is real difficult to get approvals from, what a headache. Unfortunately I had to just in case they put me out on disability. I would think that even with therapy 100% strength in the arm would be hard to achieve after these procedures. And as you know having family in law enforcement, they may look to put me out on disability if I don't have full strength in my arm. My right arm is my effected side and I also hardly use my right arm...if I do the pain and burning in the shoulder and scapula starts! Thank you for the prayers and I just landed one appointment with a doctor out of NYU, Dr Cayne. I am still waiting for an answer from Dr Schneider out of New York Presbyterian to see if he will accept comp. I have heard more about him so he is my first choice, but he hasn't called me back in days so I'm assuming he doesn't want to accept comp. Good luck with your surgery and keep us updated!

Dr Neil Cayne
 

I forgot to ask....I read a few reviews, but has anyone heard anything about this doctor? Good or bad? Dr Neil Cayne out of NYU.

Dr. illig at FSU in Tampa. he diagnosed the pec minor syndrome through a physical examination. I never heard of this until he diagnosed me. I believe Dr illig replaced Dr bandyk when he moved to California.

Joshuamr, I can tell you that I have been in law enforcement for 19 years and my problems started two years ago. I have had two surgeries on my left side Sept 2011 and July 2012. I still have nerve issues. I do have ATOS and NTOS bilateral. I have been doing therapy ever since and had to be put on disability. I am in Ohio, and our law here gives me five years to return where the city that I worked for has to give me back my position if I can make it back. I still lack the strength in my left arm to pass the city doctors tests, so I continue to go to therapy. Everybody is different and responds to the surgery and healing with varied results, so it depends on how your body responds. Good Luck and my prayers are with you. I miss the job very much. As you know there is a special bond between coworkers that you put your trust with, and I miss being around my coworkers. I fight everyday with this TOS, but I refuse to let it beat me. Keep up the good fight.

Hey brmr19, thanks for the response. Sorry to hear that the surgeries haven't eliminated your nerve problems. That is what I was concerned with as well. My injury was job related so the way it works here is they keep me out "restricted duty". I can remain in this capacity for quite some time. Still have to go to work and sit at a desk. If I do get surgery, which is very likely, they will probably keep me for a few months and evaluate my chances of coming back 100%. The particular thing that I was worried about is what you said, the arm strength. Since it was an on the job injury, after the evaluation they make their determination if I get disability or not. I can imagine how u miss the job and the people you work with, it's a job that brings people close to one another. Good luck to you in your healing, and I pray you get back to the job you love.

Hi there,
Dr. Darren Schneider used to be in the Bay Area, CA, that is the region where I live now. He has an excellent reputation and is a very skilled surgeon. Now New Yorkers are so lucky to have him. Since he has not been in N.Y. state that long, he may not be in the W.C. system yet. I know that he accepted W.C. patients when he was the chief of vascular surgery for U.C.S.F. in CA. You might just call his office and ask.

As to your question about your functional limitations after surgery-- please get the best physical therapy AFTER your p.t., your doctor should prescribe it and push to have it authorized. I have heard that the better shape you are in before surgery the quicker your recovery will be. But some people with very narrow A to P chests could run a greater risk of damage because there is just not enough room.

There are risks to having TOS surgery, a risk of nerve damage. However not having surgery slowly damages the nerves too! Every person, every body is individual.

Also, I would not recommend Pec Minor release because it will result in a weaker pectoral area! If you are in law enforcement you need to be physically strong. Pec Minor cuts a muscle/tendon! Please get a thorough diagnostic workup to figure out how much of your problems are coming from "Pec Minor" impingement. Do not agree to get the Pec Minor until a doctor proves to you that it will help you.

I hope you are able to see Dr. Schneider!

Hey nerpain4 thanks for the info! I tried to make an appointment with Dr Schneider two weeks ago called the receptionist twice who said she would find out if he accepts WC, but she never got back to me. I made a bad decision I guess and went elsewhere. I am just confused as to which doctor to see next since Venous TOS and Arterial TOS have been ruled out at my last appointment ,but the vascular surgeon i saw told me he doesn't treat NTOS and told me to see a neurologist. So does anyone know if Dr Schneider would diagnose AND treat NTOS? Thanks for the reccomendation on pec minor.

Nottherightkindofdr,
how did the surgery go? I have the same issue. I go to see my dr next month foe next options.

Was it worth it?
Are the symptoms gone?
Any issues i should know if i do get the operation?
What questions should i ask the dr?
Thank you!!
Ciarrai

Hi Everyone
I was diagnosed with bilateral neurogenic TOS. My right should is the worst as I am right handed.

Symptoms:
Shoulder feel like it has the flu
ring finger and pinky pucker (like they were in water)
ring and pinky are colder then the rest of the fingers
hand will turn white if raised above my shoulder
generally lighter in color when not raised
can't sleep on the right side
handwriting= horrible
nails break all the time on that hand

What I have tired:
About a year of PT- a little help and some relief
Jan 2014 Botox injections
May 2014 Botox injections

I go to see my doctor next month to see what else I can do.
Any suggestions or tips I can inquire with the Dr about?
I am thinking surgery is the next step. I am also looking for some insight on that. I.E.- what to do to prep for the operation, what to preplan for after the surgery and I am home, etc.

Thanks for any help and insight.
Ciarrai :)

My son, who has n/tos and had surgery recently, was told no contact sports for one year - so I am going to extend that by logic and say you probably will have to avoid potential direct hits of any nature for a bit. He is a few months post-op (first rib and scalenes) and there is no limitation to his range of motion due to the surgery anymore. He had a few months of post op restrictions for amount of weight he could lift, carry, push, pull. They key to your jobs evaluation may lie in how much improvement you get from surgery. Also, I think each surgeon has his own approach to the post-op period insofar as restrictions and recovery, so it's best if you ask whoever will do your op.