Originally Posted by parbie

Hi everyone,

I haven't posted in a very very long time, and meant to update those who are oldtimers on my last surgery. I have gotten some messages asking about how I am doing now, and apologize for waiting this long to post again. I had actually been going through a lot of additional personal issues over the past year and was trying as well to recover as best I could or live a "normal life" without preoccupying myself with this evil monster we have called TOS.

In June of 2014, I had my seroma drained by a surgeon in Vancouver, Canada. I was in the hospital for longer than expected due to some leakage from my surgical site and needed to avoid any serious infection. When I went home, I had a nurse coming in to change my dressing because I had to keep my drain pump in the site for a few days until it was low enough to remove. Overall, the surgery was minor in my opinion in comparison to the rib resection and scalenectomy and pec minor tenetomy I previously had. To give some background, the first surgery was unsuccessful due to the surgeon not removing my ribs (I have a c-rib-well 2 but this was all the right side) although he was supposed to and a long thoracic nerve injury. I went to a second surgeon and things went well however I soon after developed a seroma. This was in my opinion and the surgeon's, due to the fact that I had a redo surgery. If I had gone to the second surgeon in the first place, I might be doing a lot better.

Anyhow, it took me a few months to recover following this last surgery, and it was very difficult as I had little support and was living alone. I eased back into daily activities and went through physical therapy, but it was not making things much better. Overall, my symptoms did improve in comparison to how bad they had been prior to my last surgery and even the first surgery. But not on a level that I am happy I had it. I began removing limits on myself and became determined to return to my life. I had been out of work for 2+ years and I am still young (29). So just recently, end of February I landed a job and relocated to Orange County, California. Starting a new job and transitioning to driving (a lot) when all I used to do was walk or take public transit has really increased many of my symptoms. Especially recently, with all of my commuting and sitting in uncomfortable chairs for long periods of time I am not surprised by this. But this is the sacrifice I am making to continue with my career, because without it, I will not do well mentally.

My symptoms right now are numbness in around 70% of my right hand, the remainder is pain, and numbness in my clavicle area and shoulder, as well as pain with increased use. My left side symptoms were gradually worsening and lately that has been become more of a problem, but I really want to avoid surgery only because of my personal experiences with them. This is not to discourage anyone from surgery, as I truly believe it had a lot to do with the surgeon I chose and also to each of us being unique in our own symptoms and level of severity. I would say I have a very severe case of TOS, and I am finally coming out of denial since I am experiencing a lot of neck pain and increase in symptoms again and need to address all of this if I want to keep living life the way I am right now.

I haven't had much of a chance to go through the forum yet, but I would like to help in any way I can for those who are newbies or are not sure whether they have the diagnosis. I am also hoping to learn if there is anything new in terms of physical therapy or even alternative medicine that has been helping others. I may go down the route of injections because at this point, I know I will not achieve anything close to permanent relief and just want something that can help me get through day by day. As for medications, I had a pretty rough battle, but managed to get myself off of some major medications, with one left, Gabapentin. I have been reading up and been trying to figure out why I still feel very tired and unable to concentrate or think clearly a lot of the time and I am attributing it to still being on this medication. My memory is also definitely not near as sharp as it used to be and I wish I could have it back. As much as medications can help, I have learned the hard way to be very wary of the short and long term side effects. Has anyone come across any type of treatment or medication that is working for them without a major side effect? I would love to find out!

One thing I cannot wait for is to go to Ando Aston Physical Therapy since it is right in Orange County. Ando is supposed to be an amazing PT that specializes in TOS and has treated 3 old members in the past who had some great success in PT.

Thanks for reading. I am so sorry to see so many of us dealing with such a debilitating condition. I hope my experiences are helpful to some of you.