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.