unfortunately, your story is not uncommon at all for a TOS'er, shellie. i am so sorry this is happening to you and i really hope that you will join us over on the TOS forum because i think you will find some great information and meet some incredible people there in the process...

lots of us went through years of misdiagnoses, unnecessary surgeries and damaging PT before finally receiving the accurate (if not welcomed) dx of TOS and landing here.

listen, one thing jumped out at me from your post and hopefully it is just a misunderstanding. it is extremely important that your surgeon remove your entire first thoracic rib when he performs the rib resection on you. naturally, he will have to partially resect both the anterior and the middle scalene muscles in order to get that rib out, shellie, as those structures are anatomically attached to your first rib. but your post says he's only taking part of the rib out, too - PLEASE say it ain't so, girl!--

because believe it or not, there is a danger of the rib growing back (and causing compression problems again, and worse) unless the TOS surgeon very carefully removes the whole first rib. i believe you stated that your surgeon was using the transaxillary approach; that is what my surgeon (dr. steven annest of denver, CO) used, as well. he then reattached the cut end of the middle scalene to the cut end of the first rib in order to leave a smooth surface for the nerves to glide on. most of the top TOS docs have their own, slightly different approach to things... just to keep us on our toes i guess (like we don't have enough on our minds already? puleeze!). lots more about these general approach issues on the TOS forum.

PM me if you have questions about this particular aspect, though, and i'd be happy to point you towards the scientific research or we can even talk on the phone if you'd like. if you're anything like me, you're starting to get pretty nervous right about now - august is right around the corner, after all!--

this is a good support group and we'd be pleased to help see you through the perioperative process, shellie. you have been through so much already and i know you bring a lot to the table as well. i'm looking forward to getting to know you.

if i were you, i'd be careful of that other shelley, though... she bears watching! --

alison

Hi Shellie and welcome to this great community.

I hope you find it as wonderful as I do.

Hi Shellie, I had surgery in 2000. I had a rib resection and scalanectomy. I had been pain free for 6 years but I was unwise and re-injured my neck. It is very possible to have a successful surgery. I am trying very hard to be careful. Since my surgery I have had a baby with no complications. Please feel confident and be careful of how you use your arms. Best of luck. Linda

Hi Sea Pines,

Thanks to you and others who have replied. I feel so loved already! And I apologize for taking so long to get back to you...I've been away from my computer for several days. To answer your question about my rib resection, I am about 90% sure that he is only doing a partial rib removal. But because you raised the question, I am now skeptical. My pre-op should be Aug. 14th (I'm waiting for a call to confirm the date), and I will definitely ask him about it.

Thanks again for your support, and I'll "talk" to you again soon!

I am a TOC'er too and have herniated and bulglings discs. I too had thumb issues. I've not had surgery. You can go back and read my Post if you like. I was misdiagnosed and took the wrong advice. I've suffered because of that and have very bad ill feelings toward the doctor who did misdiagnose me. I've been in PT since 2000. It keeps me working. I also try alternative things that seem to help in some way. 3" balloons under the arm pit opens up the area and seems to help my symptoms down the arm.

I don't know what test you're calling the 90-90. What test is that? I'd like to know.

My symptoms have decreased a lot over the years and I'm not ready to have surgery, although I'm still very symptomatic. I've learned the hard way about the dos and don'ts of TOC. It's very life altering. The pain patterns will change as time goes on.

I do think surgery can be successful, although I've read some pretty bad results and secondary complaints. You must have confidence in your surgeon. Ask him more questions about your particular procedure. Each person is different, thus each surgery has to be cretiqued to your anatomical structural condition. Rib resection and scalanectomy is also recommeded for my TOC. I'm at a mild stage right now but can exacerbate to moderate. I'm not severe any more but it's a chronic condition.

Best of luck with your future impending surgery or whatever you choose. I do think we're lifers with this condition, though... surgery or not.

After reading an article by Dr. Brantigan, I ran across the name of the test. It's the Elevated Arm Stress Test (EAST). It's supposed to be the most reliable test for TOS. You extend both arms out to the side at shoulder height, then bend your elbows at a 90 degree angle pointing up, palms forward. Your shoulders and elbows should be aligned with your spine, not pulled forward (which is most comfortable for many). You then open and close your hands slowly over a 3-minute period. Most people can do it with forearm muscle fatigue only, but in TOS patients, it causes pain in the neck, shoulder, and arm, and tingling/numbness in the forearm and fingers. Your hands will turn white/blue, and you may have some swelling. Some TOS patients cannot complete the full 3 minutes.

Thanks for explaining that. I've had the EAST many times. I didn't know what it was called or referred to.