Thoracic Outlet Syndrome Support Group

Thoracic outlet syndrome (TOS) consists of a group of distinct disorders that affect the nerves in the brachial plexus (nerves that pass into the arms from the neck) and various nerves and blood vessels between the base of the neck and armpit.

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after TOS surgery.

I was diagnosed with TOS in 2007, after almost a year and a half of running around with different doctors, I found a great doctor in New jersey who actually knew what I had and sent me to do all the necessaries tests to make sure that I had TOS, sadly it was too late and I had a chronic case of TOS. we started to get authorization to have a surgery and it was done in Boston Massachusetts General Hospital in 2008, I cant say that I am 100% ok but I am much better than before. I had my first rib removed and my scalenous muscles removed too. it has been really hard for me because I am single mom and I had lost everything that I had, but I am proud and bless to say that I am here and I hope with all my heart that I could help others with this syndrome.
it is not easy, but with the right information we can make it!..

Replies

deleted_user
deleted_user

Thanks for the post. I was recently diagnosed with TOS. It has been 3 years of dealing with the pain. I am scheduled for surgery in a couple of weeks. Do you have any tips or suggestions on how I will feel after surgery? I an a bit nervous.
deleted_user
deleted_user

I have read so many negative responses to this, I am not so afraid, to get the surgery. However, I have had this pain, for 5 years, and in the last 6 months it has gotten so bad, that I can't do anything I used to enjoy.
I am seeing the chief Thoracic Surgeon in Baltimore's Good Samaritan Hospital, and I don't know to believe.
deleted_user
deleted_user

I also had Dr Karass
Do my surgery, I am recovering from my second surgery now. How did everything go for you?
shib
shib

Loved your post......I too was advanced and had my rib resections done at MGH. I still can't practice dental hygiene but have learned to cope and live a little...most of the time anyway. For me the more I do the worse my pain gets. So I have to pick and choose my chores & activities and plan on down time afterward. Coping is a huge part for me as I am still mad I got this...lost my career and can't do things without paying for it later. This TOS is a life changer... a true disability but this site helps...just knowing I am not alone can help when feeling depressed. Yes... we can make it and it could always be worse. Volunteering helped me realize that.
deleted_user
deleted_user

As an 18 year old tennis player I have had TOS for 2 years, and as i was recruited for college tennis I knew I needed to take drastic steps for improvement. I scheduled surgery, and went through with it a month ago. I had every complication there was imaginable. From lymphatic duct leaks, to having a chest tube put in, it was a nightmare. I had a first rib resection, scalene muscles removed, and surgery on my pec minor. I was in the most competent hands but there are many risks with the surgery. I spent 9 days in the hospital, on constant pain medication, nothing ever seemed enough, and they were constantly increasing my dosages. Looking back on it, I wish I had spent more time on my physical therapy. While receiving treatment I continued to play tennis almost every day, or do some workout routine. Whatever you do, do every single exercise they tell you, and do it religiously. I looked at this surgery as a last option and a fix it all, but it is an extremely serious thing to go through. I know I got more than most people have with this surgery, but sitting in a hospital bed helpless for 9 days is something I would never wish upon anyone. Take it from me, someone whose been through it all, DO THE PHYSICAL THERAPY AS BEST AS YOU CAN! I am approaching a month since the day of the surgery and I am still feeling the pain, and I cannot even start the recovery of physical therapy since I have not completely healed yet. I have many months of hard work before I can even think about picking up a tennis racket or even living normally again. If you have any questions please let me know, and I will gladly answer everything. As a side note I was left with an $85,000 hospital bill, without doctors fees ($30,000 just in medicine costs)