Hi! I have been lurking a while on different boards.. and decided to join here, as I will need some support and friends moving forwarded. I will try and not make this super long.....

have had TOS Almost 3 years, I didnt do the Dr shuffle so much, after 2 shoulder surgery's My should was better but my tos symtoms never went away.
My shoulder Dr sent me to see Dr Avery in SF (this is all WC) and Avery sent me to see Peter, get the TOS MRA, get the brace, PT and my Tens unit, pain meds and nerve meds I have been doing this all for 10 months now.... and Im only getting worse and worse. My arm turns blue and purple the swelling is horrid and we all know about the pain... I went back to see Avery, and I knew it was coming.... Surgery... and at this point in the game im pretty much ready to have them just cut the whole arm off.

Dr Avery spent 2 1/2 hr with me covering all the complication and risk, and I signed all the paperwork... now more waiting, waiting for work comp to approve...

So Im asking you: Give it to me... The good the bad, the worst the better... I know its going to suck... buy I'd really like to chat with a few of you that have had this done. I do not have an extra rib, I do have TOS on both sides my dominant arm is the only one with problems, my Artery is involved only when moving my arm away from my body "tiger ally" measures 7.2 (per Dr pretty bad, done on bone) wants to remove 2 neck muscles and 1st entire rib, will also have a neroligist in surgery to test the nerves during the operation...says about 6 hrs 5 to 10 day hospital stay in SF.

Thanks Fellow TOS peeps
TOS gerl

Sounds like you have it covered pretty well, and with knowledgeable drs & therapists.

The swelling and blueness isn't from vein involvement???

I've never heard of the "tiger alley " or measurements of it.

Hospital stay sounds about right , it all depends on how you are doing.

Most swear by having a recliner at home for sleeping at least for the first while after being home, or lots of pillows for propping & comfort.

It 's good to hear they are taking the whole top rib and not leaving a stump, sometimes that is a problem from past reading about it online.

I'll add "upcoming surgery questions" to your title so those with surgery experiences will be sure to see it.

I'm sure the Blueness and swelling is from the vein.. the blood not getting back to the heart right? Avery said and looking at my MRI you can see the Artery get cut off when I move my arm, so I know that for sure, but sometimes when I'm not "doing" anything its turning blue..... 2-3 times a day, almost everyday this whole week a huge change.

My Surgeon call the space between my clavicle and 1st rib "tiger ally" (alot is crammed in that tiny space) they gave me my measurements on each side, but never told me what "normal" was, I do know I dont have an extra rib. im glad he want to take the whole rib as well, he said he has seen it cause problems when they dont.... I like the idea of him testing the functionality of those 5 nerves during the operation.. Any idea on the MRA shows I have on boths sides, just only one is causing me problems, should I be worried about my "good" side ?

swelling and blueness = subclavian vein

Jo Mar..... Cant fiqure out how to reply to private message???? or send you one??
But Yes, and I didnt know...so if you could help me do that it would be great. Thanks 8)

You won't be able to send private messages until you've been with us a little longer, but you can receive them.

Have a look at the top right of the page. You'll see your user name and some other information.
This is what mine looks like:

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If you click on the Private Messages, you'll be taken to your Inbox.

I hope that helps.

Yeah that helps.... She sent me a message...and now I know why I could not respond.... Thanks SO MUCH! So how do I take off other identifying info like email?

Your email won't show publicly on the forums unless you post it somewhere yourself.

You should be able to PM and reply to PMs now, the reply button will be in the lower right corner of the PM message.

Thanks for changing that for me!

Hi!
I had surgery just this past Monday, August 30th. I am home now, and on the road to recovery. My TOS is bilateral, with the right side worse. Surgery tackled the right side. I am expected to go back in for the left side in the future.

Here is how my recovery is going.... maybe it will help give an idea....

My surgery took about 1.5 hours... from 13:00 - 14:30 or so. I awoke around 16:30. Upon awakening, I felt like I had been hit by a truck. Don't be fooled; this surgery is very invasive! Basically, the surgeon explained that they had to position my arm in a way that just about dislocated the shoulder. The entry point was my arm pit - a 1.5" to 2" incision. My pectoral/chest muscles had to be lifted away from the rib cage/lungs area to access the surgery site. The entire first rib was removed. That one nerve (forget the name) was cut to prevent permanent nerve damage. And some muscles were also removed. According to the surgeon, I had quite an odd bundle of muscle "cording" wrapped around places that definitely contributed to the compression. That "cording" was removed. Then I was sewed back up. Ahh... simple.

After waking from surgery, I was kept in the recovery room until my pain level decreased to a 4 (on the 1-10 scale). That took quite a bit of pain meds pumped into the IV. Once down to a 4, I was moved to my main room.

Eventually the IV pain control was too much for my stomach, and I suffered extreme nausea and vomiting (ugh, that was awful). They took me off the IV and gave me anti-nausea meds. I began taking the pill form of pain killers (coupled with ibuprofen, and my usual neurontin) earlier than most people, because of my nausea.

I was very weak that first night. I was able to maneuver myself to and from the bathroom, but with much effort. The next day, I could manage the bathroom trips quite well, but pain was still there.

The day of and after surgery, I had to cough quite a bit. Coughing (and laughing, sneezing, vomiting, etc) is excruciating at first. When coughing, I recommend tucking a pillow under your injured arm and applying the most tolerable amount of pressure you can manage against the pillow. I screamed out in pain after each cough for the first couple of days. Now I just wince.

I only spent one night in the hospital. I chose to leave the next afternoon, around 16:00. I just couldn't bear staying in the hospital for long.

I am currently staying with my parents, who have been a great help. Be sure to have an able-bodied person with you after surgery, to help you manage your daily routine. Don't be afraid to ask for help with the smallest things. As an independent person, this aspect of recovery is frustrating. But I also recognize it is not wise to stress my right side during this time.

A reclining chair is important for general comfort. To sleep through the night, I have constructed a pillow barrier around my upper body. It keeps me from rolling to either side. It also provides a nice cocoon-like feeling.

I have been regularly icing all around the surgery site. Tomorrow, I will begin to add heat to the routine.
I was sent home with pain killers (oxycodone), anti-nausea pills, regular ibuprofen, and a prescription for a stool softener that I did not fill (you may not have a bowel movement for days after surgery due to everything that was pumped into your body... so there's the potential for your first poo to be difficult). I am weaning myself off my neurontin. I only take the oxycodone when absolutely necessary, since they kick in pretty fast anyway.

I wear an ace bandage around my breasts. You'd be amazed at how effective this is for pain control and mobility.

My breathing has been labored. I actually have to concentrate and make an effort to breath well. I tried taking a short walk, but had to stop early because of the fatigue and breathing issue.
However, I am making a point to do gentle moving and stretching. It is not wise to protect your arm/side so much that it deters healing. Just do what you can do, and be smart about it.

I believe my recovery is going quite well, compared to other stories I have read. I hope that gives you some optimism going into your surgery. So far I am glad I had it done. But it is still very early to know for sure. Consider this: my TOS had progressed so much that I had awful, chronic referred pain in my jaw area (like TMJ). Upon awakening from surgery, it was gone and hasn't come back! The pain and discomfort I presently feel, I contribute to the surgery, not TOS. So I am hopeful.

Feel free to ask me anything if you want more details.
And good luck!

-Melanie