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Originally Posted by Limoges
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!
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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.