Treatment for Cervical Degeneration

Hello, friends!

I'm a 19-year-old newly diagnosed with EDS (type unknown, either classical or hEDS). When I was diagnosed about three months ago, my doctor sent me to physical therapy to strengthen the muscles in my neck, back, and hips. My previous post explains why I won't be returning to the only PT in my area (yep, I called them all) who reported any experience or comfort with treating someone with EDS. On top of the wrist dislocation, the neck exercises they had me do gave me excruciating headaches, which put me really behind on my thesis. I start grad school in mid-August.

With that background, we come to my question for today. I would love to hear from people who have had similar experiences and what has helped them. I got the results of three MRIs (cervical, lumbar, and brain) back on Monday, and I've been pondering what to do since. The lumbar MRI was clear (yay, it's probably my hips then), and there was some weird stuff on the brain MRI, but, according to the radiologist, nothing pressing. The cervical MRI results are troubling, though. At the C3-C4, there is facet arthropathy on the left side with foraminal narrowing. At the C5-C6, there is disc height loss with desiccation and a small central disc osteophyte complex. I knew something was wrong because I've had this gradually worsening pain and arm weakness for over a year now, but this is honestly not what I expected.

Obviously, I'm not a doctor, but I am a professional patient with a curious mind, so after consulting some journal articles, I think I've figured out what's going on. Though a disc osteophyte complex is ambiguous, when combined with that region's disc height loss and desiccation, it sounds like the beginning of degenerative disc disease, whether the "complex" is actually a bulging disc or bone spurs. Then the C3-C4 has arthritic changes, possibly related to the disc height loss at the lower level.

I then searched for treatments. As expected, there were temporary solutions (activity modification, steroid injections) and things I've already tried (physical therapy, ice, NSAIDs, a soft brace). I want a more permanent solution that will allow me to not cry after sitting up without neck support for more than 20 minutes. I think I deserve to have less pain in my life. I also want to prevent other levels from compensating for the degenerative changes. It seems that disk and facet joint replacement could be that thing. I have this summer off before my Ph.D. starts, and it will probably be the last summer I have until I finish in five years. If I am going to need surgery within the next five years, doing it now would be optimal while I'm still at home with nothing academic to do.

So, EDS friends, does anyone have experience with these degenerative changes (particularly at a young age), and what worked for you? Did you have to resort to surgery and wish you would have done it sooner, or did conservative treatments save you from that? Thank you so much for your experience and for reading all that!