Getting worse
 

Hello everyone. I have been experiencing increased pain levels lately, along with visible thenar atrophy. There are just wrinkles in my skin on my right hand where my thenar muscle used to be. I am still getting sent from doctor to doctor. Everyone scratching their head when all the tests come back normal. They want to repeat the Emg now that my muscle is wasting. I have been experiencing increased pain in my shoulder/clavicle area lately. The pain feels deep and radiates into my scapula region and trapeze muscle. What has alarmed me more lately is the feeling I've been getting in my pec/chest area. It's like a tight burning pain. Sometimes it feels difficult to breathe it gets so tight. Is this a normal symptom of NTOS? Has anyone experienced this pain in the chest area. I couldn't sleep at all last night....the pain started in my shoulder and just started getting worse. The burning pain was unbearable. My forearm has been so tight and painful. Feels cramped. And the usual weakness and fatigue in my grip strength and arm. My arm. Feels like it just wants to hang. I carried my 18month old daughter yesterday for just a minute and my arm felt like I just did a heavy workout. Burning pain down the arm, and so fatigued. Then the scapula pain followed. Kinda just venting and wondering about others experiences with these pain patterns. Thanks.

I have NTOS and that sounds like it could be as your pain is in many of the characteristic areas. Have you been to any of the TOS pros listed in this board? I was lost for years before seeing Dr. Donahue in Boston.

I have not been yet. I was thinking about trying to get to Boston and see dr Donahue. My case is workmans comp and many of the doctors don't accept it. I am currently seeing a neurologist that my comp approved. If he turns up nothing I am going to try and push to see dr Donahue.

I'm so sorry everything is so difficult for you. I hope you feel better, but I did want to make mention of one thing that may save you some time. If you are convinced that you have TOS, an EMG is probably going to show nothing even if there is wasting of the muscle. It is classic for Nerve conductions/EMGs to show nothing wrong for TOS. I know that my left bicep is 2 inches smaller in circumference than my right which is significant wasting and my EMG showed nothing abnormal at all. I would suggest not pursing that area to save yourself a couple months of pain and really push to see a TOS specialist. I hope you're able to find one soon that accepts your insurance :-( :hug:

Run don't walk to see Dr. Donahue. He is everything you hope a surgeon would be: competent, empathetic, and humble. I have never encountered a Dr. like him before. He doesn't have that "I'm in a rush, make it quick" feeling that so many doctors give off.

Thank you both for the advice. Yeah I am gonna try and get the authorization to go see dr Donahue. I agree about the Emg also....read the same thing. My Neuro wants to repeat it anyway. He said although it may not show specifics...it sometimes shows abnormalities. I'm just gonna pursue dr donahue and let my Neuro keep trying in the mean time.

My symptoms sound very similar to what you have going on. I got bounced around from doctor to doctor with no results and guesses at what might be wrong or solutions that you could tell were just a guess in the dark. I finally was tired of being in pain, and felt like I knew I had TOS. I decided to find a TOS specialist and went to Dr. Thompson. They immediately agreed I had TOS and after talking to several other people that have it, I am very reassured that it is the correct diagnosis.

If I were you, and you didn't get answers soon, try to find a TOS specialists. I think the longer you put of treatment the worse shape your muscles will get, and I think a lot of people have trouble getting the muscle tone back.

Good luck, and I hope you get answers soon.

Sorry to hear what you are going through. I have true NTOS and I have and still do at times experience that burning tight pain in the chest area that you are describing, although mine is not as intense or it may be we just have different levels of tolerance. Sounds like to me that you also have a pec minor issue going on. Hope you are able to see a specialist soon.

Thank you all for your advice and support. What a nightmare this is. I see that it will only get resolved by seeing a TOS specialist. It's been over a year of testing and doctors. I am seeing a top neurologist at NYU hospital in NYC and although I am confident in his medical ability, I'm getting the feeling he's almost to that same point of being dumbfounded. That feeling I've gotten numerous times before, right before I'm referred to another "specialist". I'm going to take everyone's advice and push to see dr Thompson in Boston. Every step of this is a hassle do to workers comp needing to approve everything. It's hard to get approvals with no defined medical problem. It sounds crazy but maybe the muscle atrophy starting in my hand is a good thing. I finally have concrete proof that something is going on. Being a father of three small children is difficult when your living in pain daily. It takes a mental and physical toll on you. I am thankful that I found this site, because I think I would feel lost without others advice and stories. Knowing your not alone in this battle helps tremendously. Thank you all for the support and advice.

Dr Donahue is who I meant to say in the last post.