Hi everyone,
I've been reading this site for awhile now and it has been really helpful... so I thought i'd join so hopefully I can find out more...
So a little about me first...

When I turned 17 my hand started cramping up, I didnt think anything of it, but then things started getting worse... I constantly have pain in my right arm, its a real heavy feeling, like im carrying something and just can't put it down (does anyone else get this??). I have a really busy life, working 5 different jobs, and trying to stay on top of my studies aswell. My hand tires easily and I now cant do certain activities, such as writing because of it... In the last 6 months all of a sudden my hand has become weaker, i can not open doors properly anymore, and even using spray bottles is difficult. The doctors tested me for MS and Parkinsons and other stuff like that (all coming back clear =) ), ive been on what feels like 100 different tablets, and none of them worked, they just gave me side effects, so i stopped taking anything all together and just learnt to deal with the pain.

I was constantly in and out of hospital getting tests, blood tests, MRI's, nerve conduction studies..... etc etc.... I was getting no where, i was spending all this money and everything kept coming back normal.... my neurologist sent me to a surgeon who said it could be TOS, and that he'd do exploratory surgery, but I said no, because there was no real proof that it would even work.... I started to think maybe it was all in my head because nobody could find anything!!!

....Until 3months ago, when i became pretty sick with a cough that just would not go away.... I had just changed GP's and she sent me to get chest Xrays to see if there was water on my lungs.... there wasnt, but in the xray she found out that I have an extra 1st rib (in both left and right side of my chest) ... i explained to her about the pain I have in my right arm and how i am seeing a specialist, and asked if this extra rib could have anything to do with the pain... she explained that it definatly could, and contacted my neurologist.... from here itz sort of been like a rollercoaster ride... for 3 years everything had come back normal (or so i thought) and now i just found out that i need to have surgery, the sooner the better 2.... they have just re done tests, and things have dramatically dropped, i dont understand it all, but my test results have come back worse then before, so they want me 2 get the surgery before things become irraversable // or worse...

thing is im a dance teacher, and have finally got myself to where I wanna be after years of work... i dont know much about surgery, like recovery time and stuff... im seeing the surgeon in 2 weeks, but wanted to know peoples stories who have had their rib removed, the success of the op, and what their symptoms were before they got the op....

i had never heard of TOS before, and there is not alot of info about it around, so i was hoping i could learn from other people who have dealt // are dealing with the same thing...

any info would be great to hear, especially what the operation involves =)

IF you were in the US, I'd tell you to head to Denver to see the top three docs there. I figure you're younger than me - I'm 48 now, and I got this at 43, all in the same way as you described. However, I didn't get mine from the extra rib, I got it from over-use of the computer. (I tell everyone, please get voice software...)

So to you - first, my biggest hugs, and how sad it makes me to hear your story when you're so young. You haven't even lived...it makes me so sad. I hate TOS.

But, you've got a good attitude, and you sound like a fighter.

The "extra rib" business is a far better "Prognosis" than the "neurogenic" illness that I think most of us have. So YOU may have a GREAT outcome with surgery.

It took me 1 1/2 years to see a good return on surgery...give it time after surgery. Don't mess with those brachial plexus muscles after surgery - let them heal without scar tissue, as much as possible.

God bless you, and I do hope you'll get your surgery and come out of it and heal and be able to continue with your life as you wish.

Hi and welcome! sorry you have to be here, but you've come to the right place. Please search on 'resection' here, you will find many details of the surgery and how to weather it.

This is such a serious procedure that most Dr's have never done. You should consider seeing one of the Denver specialists if you possibly can. Your dancing career may be at stake if you go to a lesser experienced surgeon. Don't mean to sound scary, but we all want the best outcome for you.

I agree, take this very seriously. This is a very serious surgery. I had the rib-resection and scaleonectomy in 2000. My TOS was caused from a trauma. My recovery was one year and then some from drug recovery from all the meds they put me on. Be very careful. You are very young. I am 43 now. I was a mother of 3 young children, now 4. But I had 6 years of no pain. I then am back with TOS from not paying attention to my body and how you are supposed to do things as a TOS person. Just because you have surgery and are "cured", you still have to live differently. Good luck and see the best doctors you can. Linda

here's our Drs and PT listings thread- http://neurotalk.psychcentral.com/showthread.php?t=135

Do they say if the extra cervical rib is compromising your nerves or your vascular more or can you tell from your readings here yet?

I do really suggest finding the best {skilled, highest rated} surgeon that you can find in Australia, as there is so many vital structures in the area.

Since you are a dancer/teacher you know how important posture is- after the surgery or perhaps even before, some sessions with a bodyworker might be of help to keep things from worsening.
Bowen, Alexander, Feldenkrais - of course the same applies to find the best - skilled and knowledgeable - don't let anyone make you do things that aggravate symptoms.

One way you are lucky is in Australia they have great PTs trained in Bowen therapy. Search for a PT trained in this technique, one with eperience with TOS, and your recovery will go much better. You may also want to incorporate a Feldenkreis instructor or Alexander Technique therapist. These are methods designed to teach you how to move naturally, pain-free, as your body is designed to move and may incorporate very nicely with your dance work. It's incredibly amazing to concentrate on one's smallest movements and the way the body wants to do them if you paiy attention!

As far as a TOS surgeon goes, generally this is a vascular surgeon, although sometimes a thoracic, orthopedic or even neurosurgeon will do them. What is important is that this is something of a specialty of theirs, that they do more than a couple of these procedures a year, or even a month. You want someone who has done this surgery MANY, MANY times. You want to get familiar with the procedure and ask the surgeon questions about the risks, benefits, potential complications. How long will you be in hospital after? How will your pain be taken care of? What is their success rate? How soon can you expect to feel better from the surgery itself? How long to complete recovery? How long til return to dancing? Work? Driving? Etc.

If the cervical rib is the only cause for the problem, then there IS a much better recovery prospect. I hope this is the case for you, and will keep you in my thoughts!

beth

Hello LinJane,

Finding this site is going to be a blessing for you. Although I don't post much, I have been on these TOS forums for nine years and developed TOS following a cervical injury ten years ago November.

I have to agree with all here, in that this is a much more delicate and complicated surgery than many or most. There are never any guarantees with any surgery anyway, but this one is nothing to take lightly.

I am not a medical professional by any means, so all of this is personal observation. In my case, surgery would be definately a bad idea, unless I was ready to jump off a cliff, and even then, surgery would be only a temporary fix for me.

In your situation, the combination of cervical ribs and being a dancer is an explosive pairing and TOS is almost a guaranteed result.

Now the GOOD news.

Over the last ten years, I have read volumes of literature and heard MANY real life cases of TOS, from both patients and physicians. (Some patients WERE physicians.)

Over all, surgery for cervical ribs seems to have the highest success rate without par. For some reason, (I believe), the straight forward removal of a physical anomily is much less complex than navigating around scar tissue with entangled nerves and arteries.

Therefore, removal of cervical ribs, without complication, appears to have the closest real chance for actual cure, as opposed to just a decrease in severity of TOS.

I your case, the avoidance of scarring if possible, makes surgery sooner than later, common sense. In my experience, a Thoracic Surgeon, and secondly a Neurologist would be my personal preference. Certainly, the (successful) experience in Thoracic surgeries is the MOST significant factor, as mentioned above.

Australia is a very progressive society, and I am confident there are surgeons out there with the qualities you are looking for. I am heartened to know that your situation is being taken so seriously, as appropriate.

There may be someone here who knows first hand of a specialist in your area.
As I have opined, your situation may be one of the few with the most promising surgical results.

I will be following you with high hopes for a physically healthy future.

Warmly,
Anne

P.S. I LOVE Australia! It is a stunning and wonderous place. The people are most extraordinary as well. Australia or New Zealand would be my two most favorite (fantasy) places to live!!

In 1972, Australia, was actively recruiting Americans to come over for two years, all expenses paid. The hope was for the 'recruits' to stay and help with the shortage of workers. If I were not already in the USNavy, (I was an infant at the time), I most assuredly would have jumped on board.

Things are a bit different NOW aren't they?? Australia is very careful and selective as far as who can come and stay permanently. That is the way it should be. Australia is one of the precious jewels of this world.

Ooops!!! Sorry, Lin Jane, Sorry Leesha!

My post was for YOU Leesha. I guess that should be obvious, but one must always CYA, if you catch my drift.

Anne

Hi
You are in the right place to learn more! Please do take the time to educate yourself as much as possible about TOS (all the different kinds) and rib resection surgery, and take questions (write it down!) with you to the surgeon. Dont forget to check out your surgeons creditials as well, has he or she done this before and is familiar very TOS? And then get a second opinion, if you havent already.

I believe the post above are correct. You proably have a pretty good prognosis of recovering fully from your sugery since it is just to remove extra ribs! Are they removing both ribs?

Rib resection surgery is no picnic! I had my rib resection surgery nearly 6 months ago for venous TOS (a blood clot had formed in my subclavian vein). Like you I am very active and found it mentally very difficult to be restricted from activity, especially the sports that I love, after my surgery. As far as recovery goes, its different for everybody, however you are proably in good physical shape, which will later aid you in your recovery. You will be really sore and in pain after your surgery, so take time to rest and heal. You will have the rest of your life to dance. I found that at about 8 weeks after surgery I began to feel 'normal' again and am doing great now, but still have a ways to go before I'm 100% again. Its a slow process...

A few things that drove me nuts after my surgery - I had to wait one month after surgery to begin physical therapy and was getting really antsy to get moving. And when I began physical therapy, I was shocked at how much strength I had lost. You will probably also notice that the first month your breathing will be really shallow due to being on a resporater during surgery, work on deep breathing immediatly after surgery, the nurses will help you. This does two things; lessens your chances of getting pneumonia and will assist you in getting your cardio capacity back to the level in which its at now so you can resume dancing, without panting. Also, try to stay hydrated after surgery to lessen stomach issues due to after effects of the anesthesia. And the area around your incision will be numb for quite some time.

Keep us posted as to how things go for you. And good luck!

thankyou so much for all your fast replies they have been so helpful ill keep you posted with whats happening when I know =)