@steelme43 HeatherReNee,
Thank you for your kind words. I do know how you feel when a doctor is dismissive. That happened to me 5 times over 2 years as my symptoms were getting worse, and when I found the correct diagnosis in medical literature right after the 5th dismissal, my only option was to find a new doctor. The way I found that literature was because I got in the habit of reading the research papers of surgeons I considered for an evaluation as a way of figuring out if they may have interest in my case. Because I did have a confirmed diagnosis of thoracic outlet syndrome (TOS), I wanted to go to a place that also understood that because I thought that was complicating the diagnosis. That is why I looked at Mayo, because I had already been to a well respected surgeon in Chicago who missed it completely and refused to help me. There was no way to call it to his attention without calling out his mistake, and no doctor would help me do that. When I read the literature of a particular Mayo surgeon, Jeremy Fogelson, I found the term , "funicular pain" and when I looked that up, I found the literature. I knew that I had just found a surgeon who would understand this condition and symptoms and not be rattled by it. I wrote him a letter and sent in the medical literature with it and said that I thought my case was similar to this case and I referenced his literature that mentioned funicular pain.
I told him, I had been refused 5 times, and he took me as a patient. He gave me back what I was losing, and that was the ability to hold my arms up with coordinated movement. I cared a lot about that because I am an artist. I had worked years to develop that control and ability and even though I was afraid of surgery, I found my path forward. I also worked a lot on my fears and overcoming them, and it changed my life for the better.
Do not let a disappointing experience stop you from seeking care that you need. Honestly, if I had known how good Mayo was, I could have started there instead of chasing 5 surgeons who didn't want me as a patient. When you have a complex problem that can be combined with something like TOS, you need a multispecialty approach where the doctors advise each other on your behalf, and that is what they do at Mayo and quite efficiently. If you do have interest in trying Mayo, check and see if your insurance is accepted. Also know, it may be a long wait to be seen, but it's worth it. You certainly can seek other opinions while you wait.
Personally, I would recommend my surgeon. He excels at everything and always has and has a lot of compassion. He would not be dismissive of a younger person asking his opinion. He would give you an honest opinion if surgery or something else could benefit you, and perhaps surgery is something for the future. You would not be pressured about it.
Here is the insurance information page for Mayo.
https://www.mayoclinic.org/billing-insurance/insurance/accepted-insurance
If you wish to inquire about appointments at any Mayo campus, you may use this link to get started.
https://mayocl.in/1mtmR63
I think because of the nature of your past injury, it is significant for the symptoms you now have. Usually aging tends to make injuries worse and that fall possibly could have injured your shoulder area or neck if you landed on it. I would suggest seeing a specialist for TOS as it can be caused by injuries. If you choose to come to Mayo and see a spine specialist, most likely, they will refer you to the vascular lab to test for TOS and a thoracic vascular specialist. Dr. Fogelson did that with me, so you wouldn't have to start looking for multiple specialists.
If you have any questions or concern, please ask. TOS is most often missed because most doctors don't understand it and there are a lot of variations of TOS.
@jenniferhunter
Thank you so much, all of this truly means a lot to read — especially from someone who really understands how frustrating and defeating it can feel to be dismissed over and over while your symptoms keep getting worse. Your story will stick with me, especially how you connected the dots yourself, found the literature, and didn’t give up even after being turned away multiple times. The way you described losing — and then getting back — your ability to hold your arms up and move with coordination honestly gave me a lot of hope. Hearing that you were able to face the fear of surgery and come out better on the other side is incredibly encouraging. Mayo is absolutely my top choice, especially after being put through the wringer with three different neurosurgeons and getting mixed or minimizing opinions. I truly believe a multidisciplinary approach would make a huge difference and help avoid even more frustration. Unfortunately, after going back and forth with both Mayo and my insurance, it does look like my plan is out of network. As much as I wish I could just make it work, the upfront deductible and out-of-network costs just aren’t something my family can afford right now, which has been really hard to accept. Even so, your advice has been incredibly helpful and validating. It’s reinforced how important it is to keep advocating for myself and to find providers who actually understand complex issues like TOS and how old injuries can evolve over time. Thank you again for your kindness and for sharing your journey. It really means more than you probably realize.