My Symptoms of CCI & AAI (Craniocervical & Atlantoaxial Instability). From Onset Onwards
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- čas přidán 14. 05. 2023
- Hope you guys are doing okay and hanging in there, I am cheering for you!
Here are my symptoms of CCI and AAI from first onset, during my worst and until this was filmed a year ago :O I filmed it to go along with my medical road trip series to give more context, I can't believe how my my health has improved in the last year just looking at this video compared to my newer ones :) I hope you guys find this helpful!
How I was diagnosed with CCI & AAI: • How I was Diagnosed wi...
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My friend @HealingWithRachael has a similar video • What are my symptoms o... and also has a useful video on how to test for CCI • Diagnostic Testing for... Rachael is now healing and has made incredible progress!
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You are doing humanity a service... I am a doctor, learning from you!!! So serve as a better doctor for my future patients. No one can thank you enough and you don't know how many lives you are saving via this.
Thank you so much for this comment and taking the time to watch this video and learn as a doctor. I really appreciate it. Some of the best doctors I've met on my journey are those who have continued their study and learnt from patients as well. So you are doing humanity a service :)
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@iammellbell have you had Genetic studies done? All of these Diagnoses are caused by the etiology of the EDS? or is their Genetics at play?
Definitely. We appreciate doctors who learn from patients.@@iammellbell
This made me feel less alone. Thank you. My cond is pretty bad and I can't seem to get the right Dr's or tests to prove what I know... that I need neurosurgery asap to avoid paralysis or stroke. Mine has other factors like compression on spinal
Cord and vertebral artery. So sleeping, not only brings pain, but any position that I'm too unconscious to adjust cuts off what little blood supply is still getting to my brain. It's scary. I'm 64. Dr's are really hard to find who believe me and are willing and capable of understanding the complex conditions. If I can get bone spurs layered off and maybe enlargement of spinal and artery with fusion or widening or Stent... I think I could work on the strengthening and alignment. But the emergency is getting tests that prove and show at the wierd positions, to get repairs.
I've got two kids and I need to get better.
It really was nice to see you talk about what you deal with and I hope you get relief soon.
There's a Dr a chiropractor, in Fort Meyers Florida, Dr hauser, who does you tubes on it. You may already know,... but he helps with prolotherapy and strengthening instability with weights ?
Anyway, keep looking into it, and if surgery seems like ot could help, research and consider it. I am mostly holistic in theory, but at some point I saw that mine had gotten so bad, that surgery would be a huge relief assuming it works.
Thank you so much for having the courage to share all this publicly! Rachel, Christina and you have helped me a lot. I do not suffer from EDS, but I have been facing a never ending struggle the past 12 years because of deteriorating bone mass and bone quality due mainly to my awesome genes!! The last 7 years especially have been a total mess, suffering from smaller or bigger injuries and CCI which took me 5 years to get a diagnosis for... I have most of the symptoms you have mentioned although not as severe, mainly inability to support my head, headaches, brain fog, when there is no brain fog I have extreme sensitivity to sudden light and sound changes in the environment, neurological symptoms on my arms and right leg etc.. Deciding to wear my neck brace full time really saved my life by helping me manage all those symptoms and accelerated my efforts to get a CCI diagnosis. All the doctors I talked to were telling me that all those symptoms are either psychosomatic after my latest injury or just needed extensive physio, which I never managed to follow through since it aggravated my symptoms a lot. While wearing my brace throughout the day (despite my doctors speaking against it in the past) I can stay up for longer and study and finally feel productive again! I really wish you manage to find some health stability which will help you plan the next step, instead of constantly being on the defensive.
Hey, thank you so much! I am so sorry for your long term struggle! chronic pain can be so hard because you just feel so fed up and sick of it especially without answers. I am so glad the girls and my channels have been helping you! I am also so glad to hear of your increased quality of life with your neck brace, such a win! I totally get it with docs saying symptoms either psychosomatic or "just" need physio bleh :P hope you're hanging in there :)
@@iammellbellhi what treatments are u taking? Did you try picl or any injections
@@Krishanapanchaal1 will explain this in upcoming videos :)
Bless you, I have EDS however I don’t have any of those symptoms. But I’m here for you and I am here to support you! As a Zebra we’re suppose to be here for each other, that’s how I feel. I have Epilepsy and I have coughing and I feel like I have a “ frog in my throat “ feeling and I get that feeling like “ bugs are crawling on me “.
Thank you so much I appreciate that!
@@iammellbell your welcome 🙏, Anytime. That’s what I’m here for, to be supportive of you and to be a dear friend. That is what Zebras 🦓 are suppose to do. Stand by one another.
I also have the bug crawling feeling at times. Occipital nerve headaches are torcher for me.
God bless you, sweetie. You are an inspiration.
Thank you so much!
So with the ear infections - I also had that issue several years ago before I was diagnosed with hEDS, and still occasionally have stabbing ear pain, but my doctor that diagnosed me said the TMJ can cause inflammation in the ear and causes fluid to be trapped and thus bacteria to grow and voila, ear infection! Crazy how it’s all connected.
wow thats so comforting to know haha. Yes! it is crazy how interconnected it all is! it's crazy how I had chronic ear infections for years and then they immediately stopped when I got a jaw orthotic :O :O
I had a head injury in 2020 from a metal gate, since then I've been having all these symptoms starting with terrible dizziness, confusion, brain fog, constant panic attack's, internal tremors, neck pain, headache's, Insomnia, balance problems, vision problems, muscle weakness, sound sensitivity which has gotten so worse that I cannot tolerate any loud sound.
Now it's been 5 months I've been having constant GRINDING neck pain, terrible tension HEADACHE'S with every movement, having facial pain with sinuses and internal tremors have become sooo worse. Did CT SCAN, it showed intervertebral disc space of C4/C5 slightly narrowed, Reduced cervical Lordosis suggestive of muscle spasms and Mild cervical spondylosis.
But I've been feeling that I have CCI but doctors don't take it seriously and referring to a phycologist
I'm so sorry you're having this experience, my doctor also didn't take me seriously for many years. Please keep searching until you find someone who will provide you with the help you need
Try to find a place that will do a standing xray or a DMX
I have eds, pots, and a host of other conditions. I highly suspect i have cci and aai and possibly tethered cord. My drs dont think i could have that even though i have like all the symptoms. And have undiagnosed neuro disorder. Would you mind telling me about who helped diagnosed me? I am in the usa.
Itching and swelling in passages of ear, nose and throat often is from those overactive Mast cells that often accompanies EDS.
oh yeah, that makes sense!
Hi Mel- who did you see for your CCI diagnosis? Who was the doctor? Thank you!
dr gilete in spain
I’m fairly certain I have this. Are people using neck braces to train the neck? Or because the head isn’t staying up on it’s own?
Ant how often are you wearing it?
I suspect I have it too. I have eds and pots
Hey, people use them for different reasons, mostly to assist in holding up the head, think of it like a knee brace that helps support the knee. I would highly reccommend working with a practitoner on this though as using a neck brace can come with downsides - eg muscle atrophy and it is good to work with a practitioner to keep you safe and make sure youre doing the best thing for you as it is different for each person :)
I have so many of the same symptoms. The pots and heat intolerance might be because of lack of exercise..i had it and exercising made things better. Prolonged rest makes cci so much worse. What treatment plan are you following?
I'm so glad excercise helped. The prolonged rest thing is one of those viscious cycles that is that the rest makes it worse but you're so sick you can't do anything. Slowly incresing my capacity and small tasks has helped (very slowly) and I've started prolotherapy which has been helping, also massage and gentle chiropractic has helped. I will do videos in future with more info about what has helped :) what has helped you/what treatment plans are you following?
@@iammellbell haven't had a diagnosis yet. It's only my suspicion. Only did exercises to strenghten front of neck muscles and massage therapy as i don't have access to prolotherapy in my country. Bed rest just made things worse at first.
I've just been doing prolotherapy on the lower parts of my neck because they can't do it c1-c2 in Australia. It is a shame you don't have access to it! :( I'm glad some things have helped you!
@@iammellbell I have CCI with Hypermobility EDS(Ehlers-Danlos Syndrome). I have tried NUCCA chiropractic but did nothing. Is the prolotherapy giving you relief?
@@Siberianpanther I'm so sorry you have CCI it's such a hard battle. I am very early in my prolotherapy treatment, but so far its helping a lot!
Is that your imaging in the thumbnail?
no, just generic
Are you able to bend over? My head feels like it falls off with bending over. I was also diagnosed with AAI and CCI. I had a c1-c2 fusion but things aren’t that much better. My symptoms are similar to yours, but I mainly experience neuro based symptoms.
I'm so sorry your fusion didn't make things much better, that must be really hard :(
I can bend over, but it doesn't feel good for my head/neck and not for very long
Bonjour, je suis française. Je ne sais pas si tu liras mon message. Je m'appelle Coralie j'ai 28 ans. J'ai aussi une instabilité cervicales C1-C2 et je souffre beaucoup de douleurs cervicales et occipitales. J'ai regardé tes vidéos je me retrouve dans toi, tes problèmes et tes douleurs. J'ai aussi une malformation de chiari type 1. J'ai été opéré et l'opération a été une réussite pour Chiari. J'ai aussi eu une arthrodèse C1-C2 mais les cervicales ne veulent pas fusionner alors que ca fait 3 ans. Et mes douleurs reviennent très fortes.
Au plaisir de parler avec toi.
Coralie 😊
Hi Coralie, how are you? I used google to translate your comment, I think it translated well!! I am sorry that you have experienced so much pain as well as Chiari and instability, they are very rough conditions. I am glad the surgery for Chairi was successful but am so sorry the fusion wasn't. I am glad you can find comfort in having someone to relate to because these things can often be so lonely. I wish you all the best for the future and hope that you find things that help
Mel :)
Coucou Mél ! En ce moment je souffre beaucoup car il y a beaucoup de vent et le vent n'est pas mon meilleur ami pour les douleurs cervicales 😅 dans le sud de la France il y a beaucoup de vent.
J'utilise aussi le sous-tritrage français sur tes vidéos ahah et google traduction. Je vais continuer à regarder plusieurs de tes vidéos car elles sont très intéressantes. Merci de partager ton histoire. Et je te souhaite énormément de bonheur, de force, de courage (ça je sais que tu en a !! 😊) j'espère que tu vas bien en ce moment.
Merci pour tes vidéos !! Personne en France ne parle sur youtube de nos problèmes. Dommage.
What neck brace do you recommend?
The Miami J collar worked well for me but there is also the Aspen Vista. I do recommend that you get one fitted properly by an orthotist or physiotherapist or occupational therapist, so it is the right fit for you and you will be able to better trial the collars to see which is best for you. This also makes sure you're under the guidance of a professional to avoid muscle atrophy as much as possible :) take care
I’ve had a dream of a cobra biting my head off so I feel that lol
such a weird thing hey
Hello where can i message you directly just wanna ask questions if u had a problem bout ur cognitive capability
My instagram @itsmellbell :)
Allah hu akbar