What's wrong?
 

I'm newly diagnosed with TOS after a long, fun-filled journey as a "medical mystery". I've been lurking here for a while and wanted to thank you all for sharing your knowledge and stories. It has meant a lot to me to know I'm not alone in dealing with this stupid condition.

A little background info: I injured myself 3 years ago in a power yoga class. Had intermittent neck and shoulder pain with a tingling pain in my arm for a year and when the chiropractor didn't help, I got an MRI and EMG and they sent me to pain management and physical therapy. After cortisone shots, PT, and a nerve lesioning failed to stop the pain from escalating, I made the round of specialists to try to figure out what was happening. Finally I got referred to Dr Donahue at MGH and hallelujah, he confirmed it. I have a Botox shot scheduled for Tuesday but am not very hopeful that it will help. The pain has gotten so debilitating that, even with narcotic painkillers and muscle relaxants, I can't stand or walk with my arm in a sling for more than 15-30 min and can't lift or carry anything.

As a stay at home mom of a 4- and 7 year old, it's been a difficult summer but the beginning of school has me facing a new challenge. What do I tell people is wrong with me? It's hard for me to explain this tongue twister condition to people who saw me 3 months ago when I was still somewhat able to pass as healthy. TOS means nothing to them, brachial plexus needs an anatomy lesson, pinched nerve doesn't seem to convey the impact.

How do you explain your condition to casual friends and acquaintances?

Welcome JulieJem. :Wave-Hello:

Someone will be along to help.

Many years ago we had another member that was injured in a yoga session..and got TOS from it.

For explaining it, I usually would say it's a chronic neck/shoulder injury to casual acquaintances, and give more info to close friends if they ask..

Julie, please take a look at the InterX stuff i posted in another thread

http://www.interxtherapycenter.com/i...ving-with-rsd/

Its not a magic fix and temporary but works in kicking out TOS for a few months to weeks.

I think you're over-anticipating here. With TOS, you just have to try stuff and in all honesty you almost never know what's going to help or hurt ahead of time, let alone by how much. I try to be "neutral" when I'm going to try things.

I tried this early on:

"I have thoracic outlet syndrome which is neurovascular compression between the base of the neck and shoulder. This causes severe pain, numbness, muscle spasms and occasionally dizziness."

BWAHAHAHA! Eyes would just glaze over.

These days, if it's a stranger, I just say that I have problems with my neck and shoulder, usually while grabbing my neck and making a pain face. If it's a friend or relative, I give them the full explanation, but I take it slower.

Just tell them you have a nerve condition in your shoulder that affects everything up and down the line. If they ask, "Like a pinched nerve?" answer, "sort of, only bigger and more complicated."

Works for me. Most people don't listen past "nerve condition", or more commonly I'll even say "nerve thing", because they don't really care what it is as long as it isn't something contagious.

If I say thoracic outlet syndrome people don't know, and don't really care, what I'm talking about. I have chronic back pain as well, so I just say three failed surgeries on my lower back and neck. People seem to understand that.

Welcome Julie, My TOS also started with a yoga injury. Not even a power yoga, just a gentle plow. I dont try to explain it to casual acquaintances, sometimes I say "repetitve strain injury" or just "neck and shoulder issues"

Someone said they describe it like being carpel tunnel, of the whole arm.

Wearing a neck brace while grocery shopping or doing othe errand running when I feel like crap is a good tool, or carpel tunnel splints whichever. People are more helpful, more likely to hold a door, bag my groceries lightly or not give me a dirty look when I ask them to bag my groceries lightly. Or wonder why I make my kid load all the groceries in the car by herself, while I just get in and sit there.

Welcome JulieJem! First of all I'm sorry you are having to deal with this:( I know how difficult and frustrating this condition is. I have two little munchkins as well which definitely adds to the difficulty of trying to maintain a stress free relaxed state. My two year old is probably close to 34lbs and its a nightmare when he decides to sit in the middle of the store and refuses to move.
I'm curious to know how your botox shots went? Did they just do your anterior scalene. My Dr did my pec minor and anterior scalene and unfortunately it didn't do much for me. I'm hopeful that you will have a better result..

The botox shots didn't work for me at all. I had them in the anterior scalene and pec minor. I think the fact that they didn't work plus the amount of pain I'm in when I do anything, actually made the decision for surgery easier. There's not much else they can do other than pain management and I'm so tired of the drugs. So, I'm scheduled for surgery December 2nd. I do wear a sling when I'm out of the house and that helps a little. Most of the time though, I have to sit with my head and arm supported. Fortunately my kids are a little older but I agree, when my four year old has tantrums, it's so hard to help him one handed. But seeing them play doctor with dolls with makeshift slings and talking about fixing the doll's "bad arm" makes me smile!

I'm so sorry to hear that the botox didn't help. I know how devastating that is. I will pray that the surgery will bring you permanent relief. I'm sure you have tried almost everything at this point. You sound like you are at your wits end, which is understandable.
Someone from this site posted a link for a book that helped them with their TOS. (If you google sharon butler thoracic outlet syndrome it will pull up selfcarersi) (I can't post a link because I haven't written enough posts)
It has a very interesting theory on the involvement of the fascial layer in TOS.
The theory makes total sense to me. I think I'm at the point where I'm grasping on to anything that might help. Even if you don't order the book it might be worth looking into the role the fascial layer plays.
I'm getting ready to try rolphing. It is a type of massage that targets the fascia.

wishing you all the best:hug:

What is wrong?
 

My dear, there are many of us, you are not alone and i am sure not a Dr but will briefly explain. #1) I will never go away. I have yet to hear or know of one person who hasnt had complications regardless of the treatments, surgeries, painkillers, etc... With that said. There are 2 types I will explain the one so that you may be able to educate others. This is NOT the cardio related one. There is a very small triangle bone at the edge of your shoulder. Doing anything over a period of time repetitively will cause this very tiny bone to impinge on the nerves and blood vessels. The surgeries are worthles in my opinion. Complicated and the chance of ever being normal again are less than 10% and it will return with further complications. So when others inquire educate them and most won't understand some will and none will ever know how debilitating it is. With just a small explaination about this small triangle bone and it's purpose most people won't ask again, forget and will never understand. We here do. I may get chastised for my experience which I will tell you but here it goes.

Chronic pain is slow death. TOS is pain never ending. There i NO CURE and NO SURGERY that works to date. Narcotics do nothing but mask the pain and one can function on them anyway. Any attempt to implant anything in your body too me is a big mistake, any surgery is a big mistake. Most important is how you sleep and taking Vitamin B-12 and B-6. You must train yourself NOT to sleep on the affected area as the compression becomes worse thus the numbness, pain, etc..etc.. Pool therapy will give the most relief, temporary but relief. Stay reminded of repetitive things you do with the affected arm and adjust doing things differently. Very difficult to do. Accept the fact it will never get better but you can slow the debilitating process by meditation, zen and mild tai-chai. I have been researching, studying and following this for well over 25 years and most days are beyond tolerable. This is opinion and experience only. Whatever you may find here people were told by DOCTOR's being a Doctor is a "practice". I will not let them practice on me for NONE of them have a cure, surgery nor anything that will correct this slow painful death. Research, study and only do what you know you can and those that don't understand do not have your problem never will but you have us. For me it may not be long why? I don't know how much longer I can stand this never ending pain. Sleeping is the worst thing anyone can do with this condition. It is better for me to stay up as long as possible and pass out in a way NOT compressing the area. A chronic condition that neuroscientists can't even figure out no less all those under them in the field. It is awful, painful and nobody should have to suffer like we do. The day I no longer post may be the day i am no longer here because either way death will come and with this if not completely drugged out of it, it will be a very painful one and one I don't want in some nursing home. Tha is just me, my choice and free will. I hope something here helped you understand jsut what life is and will be like. UNLESS a neuroscientist figures it out because NONE a neuroscientist have a clue what to do and we suffer they make money. Stay string for the ones that love and need you the most. Best advice zen, relaxation and pool therapy. God Bless you. I believe but am losing hope that God would allow and want any of us all to suffer in this way after all what it the point of suffering constantly daily? You will find support and very good people here. You decide. I believe my experience, what i saw happen to others who took ny of the above routes I described above. So now what is my label? A "non-compliant patient". It is OUR right as a patient to refuse any treatment we so choose not to have but we are labeled, punished and left to suffer with no Dr. Thank you Dr's who are getting wealthy of of our suffering, labeling those who choose to exercise their right as a patient and tossing them away. Stay strong my dear the sling is doing you no good. Movement to keep the blood flowing is vita even if it is painful.

25years, did you get surgery? If so, what did they do for your surgery? What kind of TOS do you have. I do agree that yoga helps and just started acupuncture.

I am doing much better post surgery and have surgery on the other side scheduled. I had surgery after more than ten years of ToS and pec minor syndrome. Have you been looked at for pec minor syndrome? That is something that ha really been brought to light in the past ten years or so by Dr. Sanders.

Wow. That was incredibly depressing.