How I was Diagnosed with CCI & AAI (Craniocervical Instability & Atlantoaxial Instability). My Story 

I literally have all of your issues. Mals, EDS, POTS, MCAS, CCI, tethered cord. except I had tethered cord syndrome that CCI made it worse… so I became paralyzed waist down quickly, but also full spectrum of CCI/AAI symptoms, edema at C5-6, and C2 incomplete quadriplegic….so I am glad you just have the cervical issues. And you finally found someone who would listen.. I am still getting dismissed at the local neurologist and neurosurgeon…

I herniated a disk in my neck at c2-c3, in my sleep. Thank you for this video. I have hypermobility, syncopy, adhd, and bipolar2. I'm always tired and my hips luxate. 😢 im 33. I hope to take this to my dr since they know my c1 &c2 are hypermobile.

I totally understand with physical therapy it was so painful and made it worse I’m 22 and I’ve been on medical leave since 19 after a whiplash injury

Hello dear I will keep you in my prayers I have experienced a bit of what you have gone through (mine started last yr) fortunately only about 4 or 5 months of hell is what I had to go through but my story is so similar to yours. I got worse and worse very quickly because of doctors misdiagnosing me and not taking me seriously and I ended up being very close to bedridden. I had tremors and twitching and jerking of my body that was made significantly worse by any physical activity including even walking too far (I could barely walk from one end of a large store to the other end) I could not carry a purse, push a shopping cart (even an empty one) and I was a dancer before all of this like you were a gymnist!!? I also would get headaches, severe light and sound sensitivity, nausea, breathing problems, shortness of breath, tachycardia and ofc was just told even by some of the most reputable drs in the US that I had anxiety and that my "muscles were acting up. Take some prednisone." I felt it was so much more serious than what medication could fix so I am so glad I decided to not take the prednisone and do research. I believe I was very close to having some kind of seizure or stroke a few times and ofc the emergency room drs did nothing for me. I also had very hard time getting any scans and when I would get one it was a lying down CT which usually does not detect instabilities also the drs are not trained to look for that. I knew the problem was coming from my neck even tho I did not have much pain, (just stiffness) because when I had one of those scary seizure-like episodes it would always be triggered my looking in a certain position like up and to the left or up and to the right. Any force applied to my head in those positions like even putting on makeup made it significantly worse! I realized through research that I most likely had a vagus nerve and possibly vascular problem from CCI. Everything I was learning from Dr Ross Hauser's website sounded exactly like me and what I was going through so I called their clinic even though it is a 18 drive from me and sure enough the first nurse I spoke to said "sounds like you have cervical instability" I didn't know if I could go to Florida and just happened to try an upper cervical chiropractor my friend suggested to me a couple weeks after that... who TURNS OUT lol that she knew Dr Hauser personally and said "I think you should start with us and if we determine that you have instability a few months from now, that is where I'll send you!" I had made remarkable improvement over those few months of getting my atlas adjusted however I do have instability and am still struggling to work and drive and take care of myself day to day tasks and obviously nowhere close to dancing again yet so I am finally getting my other 2 scans Dr Hauser had ordered this month and scheduled for my first prolotherapy beginning of November! We'll have to let each other know how our prolo journey goes I think I saw you said in a comment you are getting prolo too? 💖🙏🙏🙏

thank you SO MUCH for telling your story and going so in-depth. I'm old and functional but I've been fighting these issues for years and it's totally draining on one's self. People who don't have this have no idea

Thank you for sharing your story to help others

Amazing story. Thanks for sharing.

Thank you so much for this video!

Thank you so much for your strength and bravery and for telling your story - I'm on my own journey (over 12 years) of trying to diagnose these same symptoms.

Ugh I had almost the same experience with a neurosurgeon and there are no upper cervical experts in my area either! The way they treat patients is appalling and they should have mandatory training on this critical area of the spine.

The main thing if a patient has symptoms like hers and they don't really seem to match the diagnosis with my experience with my mother and so on its better to go immediately to a specialist. I've had luck just going from Dr. To Dr. On the phone . The receptionist often know the specialists. A lot of times a patient has a huge advantage over the dr. In making a diagnosis because the patient has access to the symptoms. And I've had trouble relaying my symptoms.

Your channel has been a friend to me for the past several months (I specifically found you through your documenting your entire GJ surgery process!), and this recent series you've done on your CCI/AAI has been such a solid cornerstone for me (cEDS) and my buddy (hEDS, forced to early retire from being a doctor) to talk about our neck/spinal issues. I've been dragging ass on seeing a neuro again (after striking out so many times in the past with neuros who deduced "migraine" and "neuropathy" and called it a day), because my priority leaned in toward my GI issues really coming to a dangerous head, but now that I'm at a stasis with my GI, I'm feeling the pressure to do something about my spine. Your series is really helping me weed out the bullshit.

first of all thx for that video and your open speech...did you experience bloating? or some digestion issues? like sibo? sifo? dysbiosis? scoliosis?

Hey lovely ! I really resonate with this video! I have all the same symptoms and can’t hold my head up for months now ! Who was the neurosurgeon in Sydney ? I’m meant to be seeing one in 2 weeks but want to make sure it’s not the same one !! Hoping you feel much better soon and hope you heal asap x

Pulsed electromagnetic field therapy might also be useful for this disease. It speeds up regeneration of the tissue and bones

What neurosurgeon did you see? I’m based in Melbourne and have been dealing with so many similar symptoms

I’m in my 30s and was just diagnosed with heds. I have problems with my neck but never felt like I couldn’t hold it up. Sorry u went thru all that before u got answers

Hi. Just watch your video. Sounds like what A spine surgeon. Told me last year. A illyaughed at me. Amd said nothing was wrong g with Y neck or back amd said I was getting old and I am having I flare from my spinal arthritis and fibromyalgia pain. A year later I have still ongoing back and neck problems. And now have a pinched nerve that I worse. Compress Gerri raw. On top of other stuff. Going to get a spinal injection in a few days.

Excessive mucos? Wow, its crazy Dr's never think of anything. Especially when you're a young or older female. I'm 62 soon, have been dealing with fibromyalgia for 12 years and I always thought it was caused by my neck problems. Lord help us 🙏 😞

You need to go to the Centeno-Schultz clinic in Colorado to do the PICL procedure. Prolotherapy will not fix your cci, you need to fix your alar and transverse ligaments. I did one PICL already and it helped, do not waste your time dear.

Hey, do you ever find your neck twitches if you dont wear a neck brace for a long time? i have this

Hello I have already seen doctor Rao in Sydney and im also planning on seeing dr Gilbert for a second opinion. Question for you, how did you send your sitting MRI to dr Gilbert. His staff told me I need to upload the mri's and they won't accept a link. However the Bankstown upright MRI clinic said they will only send a link to me. So how did you manage to get your results to him?

Have you watched Rib-eye Rach? I think she has the same diagnosis and she does find healing

I'm just being diagnosed with cci right now. I've been dealing with it since a nasty concussion 4 years ago, I went down a road thinking it was brain damage for so long. I'm not as worse as what you experienced but I'm really hoping I can recover well. How are you doing now? I'm hoping I can get into aerial dancing with my daughter so I hope this doesn't ruin that possibility for me

I’m not sure what I have but feel like I’m getting worse every year. I was diagnosed with fibromyalgia with migraine variants. I still think I have something wrong with my neck. I’ve have sooo many MRIs and Ct scans. I get stabbing pains in my arms mostly my left side. Circulation issues. I even had a heart ablation done cause they couldn’t figure out why I was have chest pain and high heart rate for no reason. Now my hr is super low and I feel worse. I thought I had POTS but did a tilt table test that said otherwise. My biggest issue now is constant head issues and lack of blood flow to my face. I get headaches and facial heaviness that I feel but you can’t see. I’m running out of answers and it sucks. No mater what they say I do thing part of the main issue is in my neck even though none of the scans show. Thank you for sharing your journey young lady.

Have you tried prolotherapy or the PICL procedure ?

Do you Also have lyme disease? Curious as it seemed to go hand in hand

Have you researched prolotherapy? Dr hauser in Florida has videos on RU-vid. God bless you 🙏

Who was the Spanish neurosurgeon?

So you found out you had CCI and AAI but you didn't get surgery in the end but you've found things that have helped?

All the lying flat and weird symptoms sound like a cerebrospinal fluid leak. Have you looked into it?

At least we know drs in Aussie are as bad as everywhere else. Lesson is no cares about your health but you.