I am being steered towards injections despite progressive symptoms…

@jenniferhunter
Thank you so much for taking the time to share your experience. Reading your response honestly felt like the first deep breath I’ve taken in a while and actually made me somewhat emotional. After repeatedly being told that my symptoms don’t match imaging, your explanation helped me feel less dismissed and more understood. I also appreciate you mentioning conditions like funicular pain and TOS — not as a replacement for structural spine issues, but as something that can coexist and help explain why symptoms don’t always follow clean patterns. That perspective was incredibly validating. While I haven’t had a classic whiplash injury, I did have a significant fall as a child during a cheerleading stunt where I blacked out and later required years of chiropractic and massage therapy. My long-time chiropractor explained that the impact likely transmitted force up my spine into my neck, which always made sense to me given where my issues eventually showed up. Whether or not this ends up being part of my diagnosis, your response gave me clarity, reassurance, and a sense that I’m not alone in this — and that means more than I can express. Thank you, truly.

@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.

I completely understand your concerns. Now that you are having balance issues and numbness it seems clear to me that this is now a different ballgame. Has your urinary habits changed? It’s time to discuss difinitive treatment with your neurologist and surgeon. I believe you require a comprehensive neurologic physical exam. You already have the imaging. It is the combination of the physical exam (along with your history k or storytelling) and imaging that should decide the treatment strategy,

@laura1970 UPDATE- I did have a second opinion conducted for the October MRI Report. Very concerning.

After Cervical spine X-rays and MRI my Mayo neurosurgeon has ordered a nuclear Spect Scan. This should give even more information about what exactly is causing the pain. MRI a multitude of issues including spinal cord compression, herniations and facet joint severe arthritis, spondylosis, spurs etc. Also DDD. I don’t want to jump through hoops if the end result is fusion will be needed. I have had many rounds of epidural treatments for lumbar DDD and they did nothing but drain my bank account. I am ok with diagnostic injection but will not to RFA or epidurals as they are only bandaids
I have hip injections and they only last 3-4 months at best.

@bostongal23
I feel this so much. The hoops are exhausting. 😩 I just saw a neurosurgeon on Monday — same one who actually recommended surgery for me 6 years ago — and without directly saying it, he explained that a lot of the injections and ablations are strictly an “insurance thing.” Just steps you have to check off first before they’ll cover surgery. However, in my case (and likely yours as well!) since he can document that it’s affecting me way beyond just “pain and discomfort,” he can justify surgery. Injections and ablations from my research and knowledge from family having been through it are only temporary fixes, masking the symptoms that can ultimately lead to more issues. If they help I’m sure it’s a relief although temporary but if they don’t it’s a complete waste (and can cause muscle atrophy, amplified referred pain etc). It’s frustrating because when you’re living in it every day, you don’t want to keep jumping through temporary fixes just to satisfy paperwork. I totally understand not wanting to keep playing the game and I truly hope you can find the help you need and deserve. 🙏

@bostongal23
I feel this so much. The hoops are exhausting. 😩 I just saw a neurosurgeon on Monday — same one who actually recommended surgery for me 6 years ago — and without directly saying it, he explained that a lot of the injections and ablations are strictly an “insurance thing.” Just steps you have to check off first before they’ll cover surgery. However, in my case (and likely yours as well!) since he can document that it’s affecting me way beyond just “pain and discomfort,” he can justify surgery. Injections and ablations from my research and knowledge from family having been through it are only temporary fixes, masking the symptoms that can ultimately lead to more issues. If they help I’m sure it’s a relief although temporary but if they don’t it’s a complete waste (and can cause muscle atrophy, amplified referred pain etc). It’s frustrating because when you’re living in it every day, you don’t want to keep jumping through temporary fixes just to satisfy paperwork. I totally understand not wanting to keep playing the game and I truly hope you can find the help you need and deserve. 🙏

@steelme43 yes, my doc mentioned insurance too. I have great insurance and two different ones. All the testing should be enough to prove surgery possibly indicated. I am 67, I don’t want any surgery if I can help it as I get much older. The pain is exhausting, not that it’s excruciating but it’s wearing me down and making me miserable daily and I can’t sleep due to pain. I hope this Spect scan proves helpful