How Many People here have actually been diagnosed with TOS? PART II
 

Ok, here's this question in poll form (thank you, Jo*mar!).

I realized I should have made a "surgery pending" option, but I forgot. Fwiw, that's my situation presently.

Just a word of warning: Problem cases are more likely to spend time on a TOS discussion forum vs. people who had a successful resolution by whatever means. This will make the poll results skewed in some fashion, usually toward the seemingly gloomy side.

Also, I notice your poll kind of mixes two different issues: who diagnosed you, if anyone, and are things improving.

My responses might look funny. I was originally diagnosed with TOS 8 years ago with a positive EMG/NCV and had a successful surgery after failing conservative treatment options. Still symptom free on this side but . . .

I'm back as I injured my other side 4 years ago and the familiar TOS symptoms showed up. Again, my TOS was diagnosed by multiple MDs along with positive tests. An EMG/NCV was not done this time as the views is the test is rarely positive for TOS.

I agree with Chroma's comment that the poll results will likely be skewed.

Ok, so much for my poll-writing abilities. If anyone wants to rewrite and repost this I'm happy to submit my answers! Just trying to get an idea of what people's experience has been with this issue.

I have struggled with this issue for SO many years. I have spent years being sent for PT, EMGs, scans of various kinds, with no one, NO one (even very good doctors at the best hospitals) understanding what the problem was. I was told I simply had an elongated neck that meant I was more predisposed to injury ("giraffe" genes), or that it was probably just arthritis, though no significant proof showed up in imaging.

Finally, I was up late one night googling while experiencing an episode of arm spasms. I found a diagram showing the fingers involved with certain types of TOS. I called a thoracic surgeon a few days later on the off chance this was what I had. He looked at scans from a previous doctor and saw that both my first ribs had serious congenital deformities right where the nerves run over my ribs (actual joints and bony protrusions). I'm going to be having a first rib resection in the upcoming months, which may or may not solve this problem.

I can't tell you how crazy I've felt all these years. I'm a doctor snob, and I know there's a bias against patients who complain of pain where a cause can't be found. As much as I'm relieved to have some validation, it makes me angry that this has affected my quality of life for so many years. I remember going to my PCP after and OB appointment--crying because I was unable to sleep when I was pregnant, when I most needed to.

Those of you who have not had surgery, are you reluctant because of what you've read online? I guess without knowing everyone's whole story and history, I hesitate to take what I read as the absolute truth, if you know what I mean. I would be the same about any information I read online. Of course there's tons of good information out there, but people's reaction to pain and circumstances can vary so widely.

I know I'm rambling. Thank you for listening!

I appreciate your explanation. I only asked what I was interested in, and put it in poll form because a few people suggested doing so. Please feel free to rewrite as I'm sure your experience may help others in ways I can't think of. :)

Limoges - You are not alone with abnormal ribs. My rib was abnormal and seem to be prone to bony abnormalities given bony issues in other areas. TOS is hard especially when it can't be readily diagnosed by one specific test. I was so thankful the day that the doctor diagnosed my TOS. I had never heard of TOS until 2 weeks before that when another doctor suspected my problem was TOS.

When I made the decision for surgery, I had to try something as my arm was completely useless and worsening. I was scared to make the decision based on what I'd read online but I did my research and read every medical article I could find. I put my trust in my doctors and went for it.

For those of you who had abnormal first ribs detected through a scan, what kind of scan revealed this? CT, MRI, X-ray or something else?

Here is a link to some of our older polls - (from Useful sticky thread post #17)
http://neurotalk.psychcentral.com/post85992-17.html

My doctor saw it on a CT scan. Have you had any imaging done on yourself, Chroma?