Calling all TOS sufferers with extra ribs from birth...
 

Hello everyone,
I just want to see if anyone else on the forum is suffering from TOS due to extra cervical ribs from birth? A lot of the posts are about the blood vessels and surgery seems to be removing the first rib. I am hoping that I can just have my extra ribs removed, possibly even only the right one which is the worst, and placed over the Brachial nerve.
Looking forward to hearing from you. :)

I think it is a fairly rare thing, only a few have the extra c ribs.
With a very good surgeon there is generally a positive recovery.

I don't recall any that have posted recently mentioning it.

If only 1 side is the most troublesome then that would be the one to do first, and then see how it goes from there.

:Wave-Hello: That would be me!

left and right cervie ribs since birth.

I too have bilateral cervical ribs, though I am still trying to be "officially" diagnosed with TOS, I feel one step closer. I had an apt with the local Doc today who finally said he had no other guesses and agreed to refer me to a thoracic surgeon. I guess that is to be considered a victory. Only took 11 months...
Good luck with your journey.

Amazing, I am not alone!
 

Nice to hear from you. I am waiting to be referred to a peripheral injury clinic, but I don't hold much hope. I am moving back to Australia in 3 months, and doubt I will see anyone before then. You have no control in the UK over who you see, or even booking appointments. I will probably have to start the whole process again in Australia!!!!!!

So, what symptoms do you experience and how do you deal with it all?

Thanks so much for replying,:)
Ans

Fellow freaks, hurrah!!!!!
 

Goodness, that is a long journey. Please do let me know how you get on. I don't really want surgery, but i have taken alternative therapies like Alexander Technique, Chinese massage and chiropractic about as far as you can go.

Thanks so much for your reply. It is nice to know we are not alone!
Ans

hi Ans,

If you need surgery you'll know it. When your hands puff up red from lying on your back, and you can't lie on sides for arms falling asleep or pain in the collar bone area... when it's a near daily issue that drives you to tears... that's when it's time to consider surgery. And only go to an experienced surgeon - which may or may not be a thoracic surgeon. It may be a vascular surgeon. I say this because a thoracic surgeon did a surgery on me that caused more damage than helped (thank GOD he didn't try to resect a rib!!). It took traveling out of state to find a vascular surgeon who does the resection procedure for TOS on a near daily basis. Loads of experience is what you should be looking for in a surgeon.

Surgery can help - but be prepared for the possibility of not returning to 100% functionality. Everyone has a different outcome because TOS is unique to the individual and their (bizarre :winky: ) anatomy.


Best of luck and safe travels to you!
A

My son, daughter, and myself-all have cervical ribs!
 

Hi there!
Yes, we are a family of TOSers. We all have cervical ribs and have each had one rib resection transaxillary (through the armpit). We have experienced major relief from constant pain, though still achey with overuse some days. But much better than before. Definitely worth the surgery. I have a blog about my experience with lots of info www.rtosjourney.blogspot.com
If nothing else at least my pain and issues can help educate others.
Hope you find the relief you deserve!:)
~Robin

I too am in the .5% of those with cervical ribs!
 

I have bilateral cervical ribs, right one greater than the left, I just found this out recently however have been suffering from undiagnosed TOS for a year. From the research I have done, the best way to ensure that you don't have recurrence of TOS is to have the cervical and first rib resection along with scalenectomy and brachial plexus neurolysis to get rid of the scar tissue in the plexus and it should be done with the supraclavicular approach. My symptoms have been right sided until recently, I am now also having pain in my left side but not nearly as bad as my right. I have done PT, been on every medication you can think of, several trigger point injections, epidural injection, a nerve block and ablation of the medial branch nerves and have seen 12 doctors over the course of the year since I had an injury from weight lifting. Up until now my doctors were focused on my neck and the normal MRI and nobody thought to order a neck xray or CT scan until a week ago (had a CT scan showing the cervical ribs). My pain and numbness in my arm shoulder and hand were ignored until I started PT 3 months ago and then found out I have a labral tear in my right shoulder as well. I have seen 3 orthopeadic surgeons and the last one told me the tear is too small to be causing the pain and it is definitely TOS. A neurosurgeon (3rd one I have seen) ordered the CT scan. My next step is getting a scalene block to confirm my diagnosis, but I already know from my history and symptoms and physical exams that I have neurogenic TOS and am done with conservative treatment. I am also considering getting the NeoVista MRI to double confirm my diagnosis. Has anyone had this done/think it is necessary? Also, I am in New York and have only been able to find one thoracic surgeon specializing in TOS who I am definitely planning on seeing after my scalene block. But can anyone tell me if it makes sense to see a vascular surgeon since I have neurogenic TOS? Or only a thoracic or neurosurgeon? In that case, I am stuck with this one doctor, because the rest in NY are vascular. I am also willing to travel to SF and possibly LA or TX since there is a limited number of experienced thoracic surgeons in general from what I've found so far. Any input would be appreciated.

Try Alexander technique.
 

Hi everyone, thanks for all your messages.

I have been hoping to hear about a referral to the next peripheral nerve injury clinic. No hope, and 8th May was the last I heard anything. I have no control over my appointments and I find the whole thing so frustrating. I am just having extra Alexander technique lessons, and am looking to train as a practitioner. It gives me a huge amount of relief. However, I still wake with pins and needles. Am always tired, I don't think I sleep well and go to sleep with pain every night. There are certain things I just don't do,- like carry heavy bags, chop vegetables, type for longer than 10 mins at a time, write for longer than 5 minutes. And about once a week I take codeine to relax the muscles in my neck, but I try not to take too many drugs. I guess I am just used to the pain. It really isn't too strong as long as I have at least one session of Alexander technique a week. I practice stretches every day, and annoy my husband constantly to massage my shoulders. I find if I keep the shoulders dropped and am aware at all times it helps.

I return to Australia from London in september, and I guess the whole process will just have to start again!

Hope everyone is finding easy ways to live and manage the pain.
Thanks again for letting me know it isnt just me.
Best wishes,
Ans