I'm new to the boards. Was diagnosed with bi-lateral TOS in March 2012. My story is not unique. Had pain in shoulders, neck, head, SCM, scalenes etc. for over 3 years. Was very physically fit and active, with no known injury to the area. Have been thru the TOS shuffle, many doctors, many misdiagnosis. I do have 2 extra ribs but chest xray shows they are tiny. I have been to a thoracic surgeon and second opinion with a peripheral nerve surgeon. One at Hopkins, the other at Georgetown University. My next step would be to try Botox and PT. I would like to avoid surgery if possible. I was hoping that I could find ppl who had tried the Botox and what their experience was like. For the people who have managed to avoid surgery - any great tips or advice? Hoping for some success stories

I have had several rounds of botox and it produced temporary relief every time. If you are open to botox, it's worth trying to see if you can stop the progression or even improve. I wasn't able to avoid surgery due to anatomical reasons but I am also glad that I did surgery. I'm 8 years post op on one side with no symptoms and 6 weeks post-op on the other side.

Hi Sheri,
Glad you're doing well.
Who did you have surgery with and was it trans-ax or above the clavicle?
Thanks

I had botox 3 weeks ago and have had marginal relief if anything. I was really doing it to confirm TOS as I already had great relief from the scalene block. Now I am really confused and so is the vascular surgeon. I have a bad case of this stuff (or something) and really thought we had this nailed down after years of suffering. I am not sure what to do next. Does anyone know if failure to get much relief from botox rules you out for TOS?

I am thinking about going out of town to one of the national experts as my local person does not seem as experienced as I thought.

Can anyone shed any light on this?

Thanks Sheri! I'm glad your surgery was a success! What type of surgery did you end up having?

Thanks for your response! I had relief from the scalene block too. But that's more like a numbing agent, so Im thinking that if you inject there anywhere, you will have relief. I've had botox injected into my neck and shoulder musles, but it did not provide pain relief.

I don't think the fact that it doesn't work rules out TOS. Have you had other tests that confirm, like MRI or EMG or physical exam?

I think we are all scared about making the right decision about surgery. So many conflicting opinions and theories along with outcomes that aren't always successful. It's all very confusing:confused

Both sides were done using the transaxilliary method. The abnormal 1st ribs were removed along with work around the artery and vein to improve the blood flow.

I have been dealing with this for years and unfortunately have been misdiagnosed leading to unnecessary shoulder and cervical surgeries. A lot of doctors look at my surgery background and try to steer me towards pain management. It's almost like they are saying you have had too many chances. As far as tests I have had about everything you can think of. I am assured my spine is clear. Nerve tests have all been negative until the last one which showed abnormal long thoracic and dorsal scapular nerves which originate from the area compressed by thoracic outlet. I have terrible scapular pain and a lot of muscle wasting on the right trap and neck. My right shoulder is significantly lower than the left.

Everything was pointing to TOS until the Botox did not work. My doctor is now hesitant as I think he does not want to operate with this being negative in the history. I really do not think he has seen severe cases like mine and I am thinking about going somewhere else. The first doctor to diagnose me positive was Atasoy in Kentucky. However he is 80+ years old and retiring in a few months. I want to find out who are the top TOS doctors nationally and go to one of them. If anyone would give me some names I would greatly appreciate. I have heard of Ahn in California and the doctor at Johns Hopkins. Gettin in to some of these docs is probably difficult.

Based on my own personal experience - I would not recommend the surgeon at Hopkins.

Botox is not a diagnostic test for TOS. A Scalene block is . If you had releif from the scalene block, then that is a pretty good confirmation of TOS. i had the Scalene block which confirmed my TOS diagnosis from Dr. Jordan in L.A.
he was the first dr to use it and it has become the most reliable test. . I also had a brachial plexus MRI which suggested TOS and an EMG/NRV which did not, but I also have a bulging disk. I had a botox injection shortly after my scalene block and that actually made me feel worse, I think i had a bad reaction to the botox and it mad my muscle go into worse spasm then before. You should be able to send your scalene bloc test results to some of the dr's on the list and then try to see who you would like to go see for an exam.

Who did your scalene block and why did they not explain that it was a diagnostic?

just offhand:There are many good dr's closer to you: Dr. Freislag is at Johns Hopkins,Dr. Thompson at barnes jewish hospital in St. Louis , I know you can talk to Dr. Sanders over the phone.I dont know if dr. selmonosky is still around but he was in VA and maybe soeone has taken over for him. They are top in the field and any of them can diagnose you even if you dont have surgery with them. I do not recommend Dr. AHn.Here is the TOS Consortium list: http://surgerydept.wustl.edu/TOS_Consortium.aspx. Any of these would be good.

Pain management and physical therapy is usuallyalways reccommended before surgery,unless it is life threatening. if a dr. recommends it right awa then I would be wary.i was considering surgery but have had good results with pt (See my post in Ando& Aston thread). even though it took awhile to find a good one.Not as good results with pain mgmt,but some of the meds and injections have helped a little and have helped other people