cervical spine instability

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Cervical Spine Instability?

(Photo is just for illustration! Not my neck!)

Anyone been told you were losing the curve in your cervical spine and/or have symptoms of cervical/upper spine instability and found any relief with any treatments ?

Has a cervical collar helped at all with symptoms? Or maybe helped support your neck during sleep?

I’m still in the process of figuring this all out, but my last neck xray looked a lot like this image over ten years ago. (Image shown is from Dr. Hauser’s website.)

The pain has gotten so bad I can hardly function. My vision went from 20/20 to erratically nearsighted almost overnight (better or worse depending on how inflamed/bad my neck pain is), 24/7 headache for 10+ years, constant nausea, vertigo, tinnitus… the list goes on, and doctors have been baffled for 10+ years (about 2011).

I hurt myself 3 days ago. I didn’t notice anything while doing the activity that injured me. I woke up next morning having “emergency digestive symptoms,” and having so much head/neck/upper-spine pain I could barely move my head and felt like I was going to be sick. Been going on for 3 days now.

Sleeping makes it worse. I’ve tried pillow after pillow. Nothing helps.
I’m wondering about trying a cervical collar for sleep.

I’m still trying to find a medical team. We just don’t seem to have EDS knowledgeable doctors around here. All my symptoms have been treated like unrelated issues and every specialist thinks it’s something different. Including putting symptoms off on conditions I’ve tested negative for, and disregarding the “provisional” EDS diagnosis.
Or just prescribing placebo, sending me to psychotherapy (already have a therapist and psychiatrist) and/or sending me to PT with therapists who know little to nothing about EDS/CTD and base treatment off of only what a doctor who knows nothing about it has recommended.

I’m not looking for diagnosis here, just maybe a little advice on intervention/support until I can find the qualified medical help I need. I’m desperate for SOME kind of relief.

I’ve been living off OTC painkiller cocktails 1-3 times a day for months; rotating between 2 aspirin + 2 alleve, 2 ibuprofen + 2 acetaminophen, or some combination there of.
Just trying to limp along until I can find a doctor who knows what the *bleep* to do with me. I finally have a BCM helping me navigate all this, but I’ve had 5-6 in the past 2 years because they keep leaving so I haven’t made much progress. I have high hopes for this new one, but she just took over for the last one 2-3 weeks ago. Fingers crossed.

If you’ve read this far, thank you! At the very least, the venting helped. I seem to be at yet another turning point where my symptoms have escalated again, leaving me even less able, and the few remaining friends I had are starting to disappear because I’m not “getting better” and can no longer (conveniently) come to them on the rare occasions I feel/felt well enough to leave the house to socialize.
This is all so isolating. And the escalating pain/symptoms are scary to face alone.

#EhlersDanlosSyndrome #CervicalSpineInstability

8 reactions 8 comments

There is hope

I recently joined The Mighty because of my own experience with spinal issues. I just wanted to reach out to all who have posted here to let you know my heart goes out to all of you. I’ve been down this road, excruciating pain and neurological problems that doctors kept misdiagnosing (for over seventeen months). My spinal injury was not external, but when I saw the x-rays and thermography scan of my spine, I was shocked. I was told that this problem had been happening over a twenty-five year period. My entire spine was compressed at one point or another with serious issues at C1/C2 and C6/C7. I lost my life, couldn’t shower or dress myself, and needed my husband to help me with the smallest tasks. Even though x-rays and an MRI showed the problem, doctors, neurologists, a rheumatologist, a physiatrist, and an EMG specialist said it was ‘unremarkable.’ I had a bone scan, CT scans, and may other tests only to be diagnosed with a mental illness, prescribed a muscle relaxant and anti-depressants to deal with my “nonexistent” pain I was told I made up in my head. I was so shaken by this experience and the physical, emotional, and spiritual anguish that I wrote a book to shine a light on this condition. Mainstream doctors are not aware of it, or they don’t believe that something like this can cause so much havoc on the body. I thank God every day that my husband never gave up on me…he found the issue. It has taken more than two years, but with no surgery or drugs, I am 85% healed. I am now on a mission to bring this condition to light and educate people about it, so it doesn’t continue to steal their lives…like it almost stole mine. I wish you all well on your healing journey.


My vertebrae are playing tricks on me

So I had to have my spine realined by #ManualTherapy 4 times in the past 3 days due to #Hypermobility . Yesterday I had 5 vertebrae partially dislocated in the morning, and different 4 ones in the evening... The doctor said I'm doing everything right, and my lifestyle choices are ok. But all of this #Pain is just so annoying. I can't help but feel that I'm doing something wrong or moving weird or.. IDK. I couldn't work a single day this week, as I was so dizzy. Couldn't even walk straight. It totally looked like I was drunk in the middle of the day 🤦‍♀️ Apparently my brain was getting only ~70% of bloodflow. Now that my spine is aligned again, I still have #BrainFog . As I'm writing this, I heard another pop in my neck 😳#GoodPopOrBadPop ? I wanna do stuff and not be bored laying in bed not moving, but my body is just saying 'nope'. #EDS sucks.

#CervicalSpineInstability #SpineProblem #EhlersDanlosSyndrome #dislocations #Subluxations #spinal subluxations

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2020 What. The. Hell.

I did not expect to start the year off with a pinched nerve that has made it so my left upper arm cannot be moved away from my body in any direction and has now shifted to affect both arms as it heals, so I can experience what it would be like to be a T Rex by only using my forearms. Not amused! ....okay slightly amused, but heavily inconvenienced! #EhlersDanlosSyndrome #CervicalSpineInstability #SpinalStenosis


When you feel like a burden #EDS #ChronicIllness #RareDisease #Depression #ChiariMalformation #CervicalSpineInstability

So I’m a very positive thinker usually but right know I feel like such a burden on my mum at times. I can’t even brush my hair anymore without me holding my head up while she brushes it. I can see it drags her down a lot seeing me like I am and not being able to stop things getting worse.

Anyone else feel like this?

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My head is falling off

Having to fundraise for your own life saving surgery because your country can’t help is such a huge toll on the mind. It feels impossible right now I almost feel empty and exhausted, need all the #EDS only have til August to raise £100k #CCI / AAI #BrainInjury #Depression #Dysautonomia #CervicalSpineInstability #DislocatingSkull #BrainStemCompression

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