Okay, so I'm a 14 year old girl and I have been suffering from TOS for 3 years. The other day I went up to Chicago to have my diagnosis confirmed. Not only did they confirm it but they discovered 2 cervical ribs. I'm scheduled for first rib removal surgery sometime in January. Can anyone tell me what to expect? How is the pain? How about when you sleep? What could you do, and what couldn't you do? And of course a 14 year old girl is going to ask this, could you text?

as mammals we are very complex organisms, but at 14 your dna is fresh and as such will help you heal fast. that said be careful when you text do not overdo b4 u are ready. learn to listen to ur body's signals. it will be important to have a good pt after to guide you in a gradual return to mobility. please please be sure of the diagnosis b4 they cut. what exactly do they plan? i assume one rib at a time with some recovery in between? any other procedures? is the surgeon one of the top ones? scared is good, it makes you ask questions.

welcome.

Well with thoracic outlet, you can never be 100% sure of whether or not you have it. And the doctor is only taking out my first rib.

Do you have the extra cervical ribs??

Or they are wanting to only remove the regular top rib?

2 different things, one is usually a needed surgery.{the extra c ribs removed}
if pain is high and/or blood flow is compromised {possible clots??}

If just a "best guess" at a "fix" to remove the normal top rib .. then I'd really research on it and look for surgery results & updates.
scar tissue complications etc...

For either case an expert surgeon is really best

get multiple opinions - don't just go along with the first dr that suggests surgery.

That being said..
what are your worst symptoms and what therapies and treatments have you had so far?
What is your avg daily pain/discomfort level?
0= no pain to 10 extreme/passing out

there is a link in the stickys post # 1 with a site that has updates after surgeries.
http://web.archive.org/web/200707281...com/tosers.htm

useful sticky-
http://neurotalk.psychcentral.com/thread84.html
drs & PT listings -
http://neurotalk.psychcentral.com/thread135.html

They just believe that my 2 extra ribs may becausing my TOS. But the doctor is only removing the first normal rib. I have been to soo many doctors and TOS has been confirmed, so I'm confident that I have it.

Hi, I actually wanted to recommend that first link that Jo*mar posted, but couldn't because this is my first comment here, plus I was a little unsure of what to say.

I highly suggest that you look at that link, especially the names with a check (for "update"), because, as Jo*mar said, the update is often for a discussion of the commenter's surgery. To be honest, you will find that many of these patients ended up worse after surgery. I think that this is something that should be seriously considered before anyone rushes into surgery.

Looking at the page again, maybe "many of these patients" should have been "some..."

only a rib is actually spinal surgery, never minor. some surgeons also do other procedures like a sympathectomy for example. sometimes the 2nd & 3rd opinion just look at the first guys opinion and agree without too much thought. especially if they golf together. have they done the test where they raise your arm and see if it turns blue?

ps the sympathectomy was bad news for many here.

I had the rib resection and scalenectomy four years after my diagnosis of TOS, neuro.

I got it from over use on the computer.

I went to Dr. Annest in Denver, Presbyterian Hospital, even though I live in CA, because of the huge volume and success they have there.

I was very scared.

The surgery itself was a breeze.

But, after the Fentanyl wore off, I had fibromyalgia (total body pain) very bad, and ended up being in the hospital nine days. This is not usual.

The key is not to move around and cause scar tissue. you want to heal with the least amount of scar tissue forming. Don't text or use your hands, fingers, etc., for as long as you can, and be protective. Don't waste the surgery by going right back to repetitive movements which can cause scar tissue.

You are welcome to PM me and give me your phone number and I (I am female) will call you from CA, or, I will PM you my phone number so we can talk. I don't mind talking to your parents also. You do need someone there with you to fight for pain medication and get things for you and keep you drinking fluids. I was alone and it was harder because of that.

God bless you and keep you safe through this surgery. I have known many people now, in person, who have had the surgery, and more than one, and they are better now than before. They are not cured, though. That is just a fact. But you are very, very young, and your TOS may be curable because removable of the extra ribs may take care of the problem!!!

Be hopeful!!!

The other commenters here know a lot more about this surgery than I do, since I personally was never even a candidate for it. So I'm really sorry for saying something that probably scared you more than necessary. The main point is just to be careful.