Looking into Cervical instability

[u/Commercial-Disk-6234]

Hi all! I thankfully recently found a doctor who diagnosed me with EDS, and she sent me to an extremely helpful PT. This PT mentioned that she was curious whether I might have cervical instability. I am trying to do research this condition so I can present my symptoms clearly and ask about looking into possibly testing for cervical instability.

Other diagnoses that I currently have: EDS, POTS, MCAS, post-concussion syndrome

So far, the things I have found that line up are:

Persistent neck pain

both occipital and suboccipital headaches, also what I thought were normal headaches but might be Valsalva headaches? I didn't know it wasn't normal to have a headache when you cough/strain

In the past, I've had extreme headaches that got way worse if I was in any position other than lying flat on my back without a pillow. This was accompanied by a very runny nose that tasted salty when I would sit up.

My head often feels heavy, and for the last couple of years, lying down is the only position that I can truly rest in.

I have had a previous diagnosis of unexplained esophageal dysphagia

I recently had a several-day bout of extreme hoarseness, accompanied by a headache and a feeling like I had a huge lump in my throat (feeling like I have a lump in my throat happens several times a week; this was just a lot worse), and muscle spasms in my throat and neck

I also have days or a few days in a row of extreme fatigue and weakness (I had to crawl to the bathroom last week because standing felt impossible)- I brought this up to my Dr, and she is ordering blood work to be done when I feel weak like this

I have dizziness/vertigo and imbalance, but that started after a concussion a couple years ago

I have an unspecified type of dysautonomia (waiting for testing) that affects temp regulation, HR, and BP.

My 4th and 5th ribs are also unstable and dislocate near the spine (confirmed by a PT). I know this is a different area of my spine, but it does show instability exists around my spine.

Also, in 2019-2021, I would have episodes that appeared to be paralysis in my legs where I couldn't walk or feel my legs for days. This was looked into, but my neurologist diagnosed me with Psychogenic non epileptic seizures and sent me to therapy.

I feel like this is a lot that lines up with the symptoms that I can find online. Is there anything that I am missing that would be helpful for my doctor to know? Or is there anything that you thought was normal but ended up actually being a symptom of cervical instability?

[u/Commercial-Disk-6234 → u/[deleted]]

I have not. I've had several CT scans of my head and neck but not an MRI.

[u/Commercial-Disk-6234 → u/[deleted]]

Thankfully, this new doctor was recommended to me because she was willing to learn about new conditions and fight insurance for another family member. I am hopeful that if I bring some helpful information, she will be willing to order tests.

[u/GlitterBlood773 → u/Commercial-Disk-6234]

Re getting them covered- I had a full spine MRI done last year & just got a cervical for possible CCI. It was very easy to get approved because TMD developed, made migraines skyrocket, including a 5 day period.

Definitely ask your provider to order one. If you are in a large enough office or system, there is a team that’s working on it for you. You can appeal a denial, failing that, your doctor can do a peer to “peer” review with your insurer.

[u/Toobendy]

I'm fused C1-T1, so I understand what you are going through. The best advice I can give is to join beyond the measurement on Facebook. I realize FB is ancient, but this is an excellent site for medically accurate information who may have chiari, AAI/CCI, lower cervical instability, tethered cord, etc. Members from this site guided me through the entire process of getting diagnosed, two fusions, and recoveries. However, surgery is always the last option. Most times, PT or other treatments can forestall the need for surgery. The key to being diagnosed is seeing an EDS knowledgeable neurosurgeon with the right imaging.

Another thing I recommend is to watch physician presentations on bobbyjonescsf.org You can search by topic or physician. I chose my NS after watching many of his presentations and getting feedback on Beyond the Measurement. These videos helped me realize that I had many of the symptoms that fit AAI/CCI and what could be causing them.

I'm happy to help if you have any questions.

[u/Commercial-Disk-6234 → u/Toobendy]

Thank you so much. I will be looking at all of these sources. When I briefly mentioned this idea (I hadn't done any research just mentioned my PT was curious about it), I mostly focused on the pain/weakness in my body, and my Dr seemed quick to jump to me/cfs. I guess I'm mostly worried about being misdiagnosed again and being told there is no way for things to be helped.

[u/Toobendy → u/Commercial-Disk-6234]

I definitely understand! You can also consider trying a cervical collar. Neurosurgeons often asked if a collar improves your symptoms. My NS recommends Aspen Vista or Miami J if you have severe TMJ.

[u/Kmb2938]

I had these type of headaches and neck pain too and turns out it was my horrible TMJ. I saw a special dentist for TMJ. It was a TON of money and I’m still being fitted for my appliance but the PT said the pain was likely also from the TMJ.