How I was Diagnosed with CCI & AAI (Craniocervical Instability & Atlantoaxial Instability). My Story
Here is my CCI and AAI diagnosis story. It took many years for me to be diagnosed so I hope that by sharing my story it can close the gap in diagnosis time for future patients and help make earlier intervention possible.
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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.
@iammellbell
10 ай бұрын
That sounds absolutely horrible :( I hope this information helps when you take it to your doctor
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…
@iammellbell
10 ай бұрын
Your story is completly heartbreaking, I am so extremly sorry for everything you've experienced and are goign through
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? 💖🙏🙏🙏
@B3l0v3d05
9 ай бұрын
I have many of these symptoms but have been diagnosed with MEcfs and FND. What brought yours on?
@JacksonStar4757
9 ай бұрын
@@B3l0v3d05 I've been diagnosed with chronic fatigue and FND too! By a neurologist from a very reputable hospital - UPMC of Pittsburgh. They supposedly have the best neurosurgeons in the country. BUT that neurologist was failing to recognize that this is coming from my neck. FND is such an umbrella term that they just label you with when you have real, neurological symptoms but they can't find a reason for it on your brain MRI. And to my knowledge there really is no cure for it except for a certain kind of PT and brain retrain programs WHICH if I would've chose to try the PT given that I absolutely do have cervical instability, I could've got much worse. Turns out I was able to get my CTV and neck MRI that Dr Hauser ordered and all surprise surprise my upper cervical instability is bad enough that I qualify for spinal fusion surgery but that's obviously why I went to Hauser. Hopefully all my symptoms can get resolved by prolotherapy and possibly prp. He treats the whole neck I just had my first treatment - seeing a little improvement already n hope to be much better by my 3rd round 💙💛🙏 Do you have any neck pain, stiffness, head heaviness or clicking, popping, grinding in the neck? If so find an upper cervical specialist or call Caring Medical they will help u. It makes me so mad that most Drs don't want to recognize structural problems and that if you fix the injury then you fix the problem. I told the neurologist who diagnosed me with FND that each set of symptoms came after something I did to my neck! After roller coasters I had dizziness and brainfog and poor short term memory for the first time for 9 whole days then the following May I twisted my neck too far or for too long looking at my back n shoulders in the mirror... then came the tremors occasionally and the stiff trap and scm muscles and heart attack symptoms then by the end of summer after doing a pull up I became very debilitated in a matter of weeks. Like why can't Drs put 2 and 2 together?!! 😡😡😡
@jackiesicilian5720
6 ай бұрын
What is fnd?
@B3l0v3d05
6 ай бұрын
@@JacksonStar4757 how's it going now after your additional prolotherapy sessions?
@B3l0v3d05
6 ай бұрын
@@jackiesicilian5720 Functional neurological disorder
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
@iammellbell
3 ай бұрын
That is horrible! I am so sorry!
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
@iammellbell
3 ай бұрын
Thank you so much for your message! I am so sorry you've been fighting these issues for years, it is draining!
Thank you for sharing your story to help others
@iammellbell
9 ай бұрын
Thank you ❤️
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.
@iammellbell
Жыл бұрын
Hey, I am so, so glad my channel has been a friend to you and I am so glad in the ways it has helped you! That really, really warms my heart and I am truly so happy to hear. I am so, so sorry for what you're going through! I definitely can relate with having to stabilise GI issues and also avoiding neurosurgeons because of all the reasons and how difficult it is to be in that space and trying to seek help. I hope your next few steps in the process will bring you help and a greater quality of life. I'm cheering for you
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.
@iammellbell
2 ай бұрын
Yes, I agree
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.
@iammellbell
5 ай бұрын
Thank you so much! I hope you find the help and answers you need!
Thx for this lovely informational video I know it wasn't easy!!! I too experience same here w/docs in US. I'm wondering what we need to look like or what to say much less $ spend before taking seriously? I'm 52 been very ill since Covid 2020. ME/CFS long covid (which is many illnesses imo) so I moved in w/my parents last winter for 5 months eating well, rest on 1 level floor and I began to slowly make progress. Then I unfortunately got covid again February 2024 (acute flu symptoms not bad) I then moved back home 2 months after that & I've just gone downhill. I'm now in bed most of the day, by myself hardly able to do anything much less take care of myself. I'm worried about the future especially being alone in this. It's too much for anyone to understand even my family says go for a walk! Very difficult but I'm sure many understand. So I saw a neurologist last week who scheduled brain, cervical & lumbar mri tomorrow. Ruling out MS is what he wrote. My necks been progressively getting worse I'd say past 8-12 months & im constantly using a travel neck pillow. Eventually i learn about your diagnosis. So on my own advocating for myself completely. My GP sends me to psychiatric center every time... it's awful!!! I'm praying to find answers soon bc I can't live like this much longer. I hope your doing well & Prayers to you, God bless🙏🙏🙏 Kim 🫶
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
@iammellbell
5 ай бұрын
thank you, I am sorry for what you've been through too!
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.
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 🙏 😞
@iammellbell
5 ай бұрын
Oh wow!
@UltimateGamingNow
5 ай бұрын
There is no fibromyalgia, it all comes from your neck. You most likely have cci
Pulsed electromagnetic field therapy might also be useful for this disease. It speeds up regeneration of the tissue and bones
@iammellbell
9 ай бұрын
That sounds really interesting, have you tried it?
@amgnico
9 ай бұрын
interesting how does it work?
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.
@iammellbell
Ай бұрын
I'm so sorry you've experienced this, I hope you find the help you need
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.
@iammellbell
5 ай бұрын
Thanks for your concern, so far I'm improving a lot. I have heard great things about the PICL but I've also heard that it's not great for some people and there are some things that work better for some people. It's all very individualised
Thank you so much for this video!
@iammellbell
5 ай бұрын
You are welcome :)
Amazing story. Thanks for sharing.
@iammellbell
Жыл бұрын
Thank you so much
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
@iammellbell
9 ай бұрын
Hey! Thanks for your comment, I'm sorry you're struggling. Even though the neurosurgeon I saw had some down sides I still think he can be good at ordering the right testing and diagnosing. All the best for your appointment ❤️
Have you watched Rib-eye Rach? I think she has the same diagnosis and she does find healing
@iammellbell
Жыл бұрын
Yes! @ribeyerach is actually a good friend of mine! Her healing journey is incredible and I have tried and will be trying some of the things she had found helpful and will be sharing it online :) so glad you mentioned her, such a message of hope!
@scarlettwinters5642
Жыл бұрын
@@iammellbell that’s awesome! I’m looking for an online community of people that suffer with sickness or are starting DNRS do you know of any that aren’t super negative?
@iammellbell
Жыл бұрын
@@scarlettwinters5642 Rachael definitely would be a good one! Mandy Meehan also shares her healing journey, Megan Klee also has shared her journey healing from CCI and AAI. If you search for #DNRS on Instagram you may find some good accounts to follow :) I personally did DNRS for 4 years and it helped me a lot, but I think it wasn't the right program for me , I still believe in healing the nervous system and healing in general and have been looking for different modalities for nervous system healing etc :)
@scarlettwinters5642
Жыл бұрын
@@iammellbell thank you!
@iammellbell
Жыл бұрын
@@scarlettwinters5642 you are welcome :)
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.
@iammellbell
4 ай бұрын
I'm so sorry you're going through this. Feel free to watch my POTS video as my first tilt table test didn't show POTS either, but I did end up being diagnosed with POTS. Also, see if you can get up upright MRI on your brain and C spine to get more answers. I hope you find the help and answers you need.
@-xo6883
Ай бұрын
I'm experiencing similar:( so scared
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
@iammellbell
3 ай бұрын
Hey, I am so sorry for what you've experienced and been through I am doing well and improving more and more everyday! hold on to hope for your future goals and dreams!
@arielyaskow7697
3 ай бұрын
@iammellbell did you find a healthy diet to be helpful at all as well?? I've been struggling with awful sugar addiction from the depression. I also suffer with terrifying dissociation which started after the fall too, alot of moments of feeling like im not real or in a bad dream and losing my sanity. Did you ever feel this way?
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, do you ever find your neck twitches if you dont wear a neck brace for a long time? i have this
@iammellbell
Жыл бұрын
Yes it does and it kind of feels like the muscles are suddenly pulling and twinging
What neurosurgeon did you see? I’m based in Melbourne and have been dealing with so many similar symptoms
Do you Also have lyme disease? Curious as it seemed to go hand in hand
@iammellbell
2 ай бұрын
Lyme isn't recognised in Australia so they generally don't diagnose it, but it was suspected that I had it
Who was the Spanish neurosurgeon?
@jtfb7208
10 ай бұрын
Prob dr Gilete - Barcelona
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?
@iammellbell
9 ай бұрын
I have sent the hard copy disks off in the mail to doctors before and have also used google drives, you could also get the reception staff to directly contac the MRI facility to get results directly to them :)
Have you tried prolotherapy or the PICL procedure ?
@iammellbell
Жыл бұрын
Yes, currently starting prolotherapy, will have videos to come with more detail, so far it's helping :)
@DogHonest
Жыл бұрын
@@iammellbell good luck
@iammellbell
Жыл бұрын
@@DogHonest thank you!
@jonerikavontillman6858
10 ай бұрын
Thank you for sharing! I’m going to be starting prolotherapy and this was so validating for me
@annap1191
9 ай бұрын
@@iammellbellmay I ask who is doing your prolotherapy?
All the lying flat and weird symptoms sound like a cerebrospinal fluid leak. Have you looked into it?
@iammellbell
8 ай бұрын
yes, both the neurosurgeons I saw said they couldn't rule out IIH and intermittent leaks, but both of the neurosurgeons said that a spinal tap to test for it would be a risk (and I agree) so we put it on the back burner, hoping it will continue to improve along with everything else
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?
@iammellbell
9 ай бұрын
Yes :)
@B3l0v3d05
9 ай бұрын
@@iammellbell Wow so what's been most helpful??
@iammellbell
9 ай бұрын
animal based diet has been really helpful, very slowly incrementally building my strength and capacity over years, and I've recently start prolotherapy in my T spine, working up to my neck :)
@B3l0v3d05
9 ай бұрын
@@iammellbell I keep hearing of benefits of animal-based diet. Do you eat fruits/veggies legumes etc at all or strictly carnivore? And you also mentioned brain retraining was a big help yes? And has the neck brace helped?
@iammellbell
9 ай бұрын
I was strict for a while and now eat some fruit & honey in moderation, I also sometimes eat a little vegetables :) nervous system regulation has played a role in it but hasn't been as helpful as animal based diet so far. Neck braced has helped! :) @@B3l0v3d05
Have you researched prolotherapy? Dr hauser in Florida has videos on KZread. God bless you 🙏
@iammellbell
5 ай бұрын
yes I have! Dr Hauser is incredible, I am in Australia so can't see him personally, but I've heard incredible things about his practice. I am getting prolotherapy currently here in Australia :)
@Miamia83637
Ай бұрын
How is it going? Can you update us on prolotherapy please.
At least we know drs in Aussie are as bad as everywhere else. Lesson is no cares about your health but you.
@iammellbell
11 ай бұрын
Yes, I have unfortunately found that to be true in a lot of cases