What are my symptoms of craniocervical instability (CCI)?

These are the symptoms of craniocervical instability that I experience, as well as some CCI symptoms that I don't have that others do.

CCI is most often caused by a connective tissue disorder such as Ehlers-Danlos Syndrome (EDS), but can also be caused by trauma. Treatments for CCI include physical therapy, medication, stem cell/prolotherapy (this is controversial), and as a last resort surgery.

Here are some helpful articles about craniocervical instability:
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#EhlersDanlosSyndrome #CraniocervicalInstability #ChiariMalformation

[OldNerdLogan]

I’ve been having a lot of the symptoms you describe such as sleep apnea, pain, headaches, pressure headaches and sleeping nerve pain and heat intolerance. I currently do not have support from physicians about what I have, you’ve given me inspiration to advocate for myself, thank you.

[kirapyromantic]

Thank you for this. Omg. I have EDS and almost all of these. Im practically completely couch- bed bound. Ive been barking up the entirely wrong tree.
Thank you for this.

[grimes]

Hello, fellow EDS/CCI/POTSIE- Came across your channel and thought I'd add a couple of CCI symptoms that I had before my 2 fusion surgeries that were quite terrifying when I didn't know what was happening. One was seeing flashes of light in the dark that coordinated with my heart beat. Another was having severe palpitations and tachycardia. I know that can be attributed to POTS as well, but both of these symptoms got dramatically better after my initial fusion (C1-C2.) I've since had to be fused from occiput to C4 because my initial fusion failed. Thank you for documenting your journey and putting this information out there for others. I wish these types of first hand accounts were available when I was initially experiencing symptoms and was baffled by what was happening to me. Keep up the good work. ❤

[amberbaker]

My 9 year old daughter & I just watched your video together. She had decompression surgery 3 years ago, but at the time we did not know she had EDS. My daughter 'Sparrow' currently is in a brace & has been since last May. She is scheduled for a occipital -cervical fusion at Stanford on 12/2. It was comforting for her to hear someone that experienced her same problems. Thank you for taking the time to make these videos. 🥰

[alexandermills]

Good luck Rachael, thanks for being so open. I am a retired dr. and have suffered many neurological symptoms for the last 12 years, misdiagnosed as threatened stroke, basilar migraine, possible spasmodic angina, and I think my GP and specialists have also concluded with anxiety attacks…. All tests normal! Who would not be anxious! Now I think the problem is CCI, I have quite a few of your symptoms - pulsating tinnitus, sudden shooting pains, tingling of a hand or side of face, heart palpitations, headaches, intense dreaming, optical “movies” with eyes closed at night, and mild sleep apnea….. with worsening over the last few months. About time I get referred once more, maybe prolotherapy is indicated. Stay strong and bright, all the very best, Alex.

[tammymarshall]

I've been having neck problems for years. I had many ER visits and they always said I pulled a muscle.. Which I know I didn't. That went on for years. I gave up on doctors and went to a chiropractor. They helped but didn't fix the problem. I was later diagnosed with fibromyalgia. Ive never accepted that diagnosis because my sister had the same issues I do and she was also diagnosed with fibromyalgia. I believe it has to be something hereditary. Im looking into EDS now which is what led me to your channel.

[lauraann]

Nobody has said that I have this, had an accident in 2002, can’t keep my head up, and trouble talking, and standing and walking. Life changing.

[Vram]

Going through this now! My physio is fighting so hard for referrals as I'd be considered a severe case as well. Within a month, I i had so many different types of seizures and we found they lessened when my head and neck were supported. My Naturopathic Doctor and my hypermobile/eds physio have been absolutely ANGELS! 😭❤️

[basicbarks]

I hope you feel and get better, I too am having the same issues/symptoms and it's been brushed off as anxiety...anemia...low blood sugar...etc, i have an appointment on the 1st of April to schedule an MRI..writing all my symptoms down again so I won't for to tell them...I feel like I am my own doctor asking to get an MRI done...best of luck to you and all who's going through this. God bless 🙏🏽!!!

[renaeaz]

thank you for posting this, I have everything but the seizure parts (I have the face numbness as well as swallowing problems and some slight difficulty breathing at times. I thought I was developing ALS or something at first. You did this video with such grace and as so positive.

[TheShivaspirit]

Prayers & Blessings to you strong One.
Embrace your journey and all will make sense.
Broken bodies are sometimes houses for the most beautiful souls.
🙏🙏🙏🙏❣️❣️❣️❣️

[Meggles]

I am DMing you right the fudge NOW. Our cases sound so familiar it is actually about to make me cry. I doubted that I was having seizures or experiencing intractable pain- you ticked all my boxes. I would looove to get on vid chat with you! 🥰🕊

[mdee]

Oh Rebecca, you poor thing 😢 I relate to about 98% of your symptoms. Thank you for making this video. I feel that when a Dr. asks you about your symptoms, their eyes start to cross & they zone out... & you're not even halfway thru your list! I am desperately trying to avoid fusion surgery because in lower cervical spine c4 thru c7 would most likely need to be fused & then if they do c1-c3 - I would basically be unable to move my neck. Good luck to you! It's hard to live this way.

[krisrobinson]

You're Amazingly little sista...thank you for sharing your story...all the best with everything...🙏🌻

[candice]

Thank you so much for this video. I hope your surgery goes or went well. I have this and almost died a few times, it is debilitating and 99% of specialists have no idea what it is. I hope you get better. I keep having the seizures or losing consciousness. I’m going to have fusion. I’ve tried everything. Take care.

[applepie]

Did wearing your neck brace also help with your POTS symptoms?

[comcat]

OH I always have really bad pots spells whenever I tilt my head backwards/look up, if I ever have to tie a ponytail or something in public, someone has to hold me so I don't fall over

[iheartyeshua]

Thank you for sharing! I was misdiagnosed with MS for 3 years. I still have no diagnosis but I want them to look into this! I’m am currently misdiagnosed with psychogenic seiezures and conversion disorder. They have hypermobility on my chart but they are not even willing to talk about EDS or CCI.

I hope all goes well for you!!

[drewdavis]

Hi from TX. Thanks for this. We fight on!

[ebolacerealpoof]

im having all of these systems. im having dizziness and vision problems. my job as a waiter triggers everything .hoping I get this .. must say your so beautiful. and hope you feel better soon