What are my symptoms of craniocervical instability (CCI)?
Vložit
- čas přidán 4. 05. 2019
- 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:
www.thepainrelieffoundation.co...
-------------------------
Products & things I have found useful during my chronic illness journey ❤️️ →
DNRS Program (Brain Retraining): retrainingthebrain.com/?wpam_...
Low-Histamine Meats: www.whiteoakpastures.com/?rfs...
(15% off code: FUSEDWITHLOVE)
Redmond's Real Salt/Electrolytes: shop.redmond.life/discount/RI...
(15% off code: RIBEYERACH)
Amazon favorites: www.amazon.com/shop/gonnetopots
My etsy store → www.etsy.com/shop/FusedWithLo...
My instagram → / gonnetopots
My blog → gonetopots.com
My facebook page → / gonetopots.rachael
My twitter → / gone_to_pots
Some of the links in the description may be affiliate links! This basically means that if you purchase something through the link, I might receive a small commission (at no extra charge to you). Thank you so much for supporting my channel! 🎗
#EhlersDanlosSyndrome #CraniocervicalInstability #ChiariMalformation
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.
Good luck with everything!
Same goes with me :(
I wish you all the best. I have Arnold Chiari Malformation type 1, had decompression surgery 2 years ago (12 years doctors needed to diagnose it 🤯). I gor few months of great all symptoms free (except memory and concentration issues) but then it got way worse than before. Now I am just grasping straws and try to figure out, how to fix my problems. I am mostly couch bounded sadly. Later today I will say about CCI to my neurosurgeon (if I get to him) and... will see. I am lost what to do next...
@@ACOnetwork Google Dr Ross Hauser at Caring Medical. Loads of articles online and videos by by him/them on CZcams. Good luck, strength, love & healing to you! 🙏❤😘
@@loveconquersall143 thank you for the infoo 😁💛, I will defenetly check it out. Thank you for kind words 👍.
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.
I have had symptoms to this degree and much worse for around 22 or 23 years. I have seen dozens of doctors (well over 100) of different specialties and to date have had no accurate diagnosis for the symptoms i have. Seeing the right doctor makes all the difference but this can be VERY difficult to do. Many doctors miss things that are caused by compression of nerves in the neck or brainstem and will chase symptoms until they either accuse you of "faking it" or they pass you to someone else because they dont know. I can tell you that it has been different levels of hell on earth for a very long time just with the symptoms. Let alone the absence of any support from doctors, family, and friends.
One thing i need anyone to understand that is going through this or similar things. You MUST be VERY SELECTIVE with doctors and be VERY wary of all doctors that seem arrogant or narcistic. These types of doctors have caused more harm to me than anything else on this planet, including all the conditions and symptoms i have. The conditions, lack of treatment, symptoms, and these types of doctors make life unbearable. That is why i stress the importance of the one thing i explained.
Doing your own research is a MUST!! it can help with conversations with doctors and help you to decide weather or not to see a doctor again.
I pray that i am finally on the right track to the right doctor and a second and third "opinion". As i stated it has been a very long and almost impossible road for me. I hope something in this message can help you avoid what i have went through. I hope and pray you get answers soon and are able to recover quickly.
yes i have shifting pain,, ok now tell how can we cure this
Praying that you get better.🙏🙏🙏🙏
Hi from TX. Thanks for this. We fight on!
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. ❤
What surgeon did you see?
.
That was the first symptom I ever had, flashing lights in a dark room when waking up. Within the past 2 months I have developed all the way up to constant heart palpitations.
Glad you finally got some help. How were you finally diagnosed and by what type of doctor?
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! 😭❤️
So sorry to hear about your condition. Thank you for educational video.
Thank you Roberta ❤️
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! 🥰🕊
How are you doing?
Thank you for sharing about this! Currently dealing with this. Hoping to schedule a fusion surgery soon. Hope you're able to find the help and care you need for this ❤
Before the surgery, look up Caring Medical of Fort Myers In Florida!! Prolotherapy may be an alternative!!
@@Hansen23900is it not really expensive? how much does it usually cost
Subscribed! Thank you for making these informative videos
Im 22 years in to this minus POTS..
I had hit my head on ice when this all started.. pituitary tumor found, removed...my neurosurgeon in Pittsburgh wanted to do an
LP back in 2002 but, i was able to go back to school so he decided not to. Fast forward i have every symptom of IIH and most of CCI.. 23 neurologists, systemic botox poisoning from 200 units 18 months ago in my head. Zero relief only worsening. Are you going to JHH? I desperately need a new neuro if you wouldn't mind if I asked who? and one who will take this seriously. I stumbled across your channel and this is more info than i could ever have asked for. I'm praying for you girlie 🤗
You're Amazingly little sista...thank you for sharing your story...all the best with everything...🙏🌻
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.
So sorry to hear of all you've been going through. You aren't alone! I am at Caring Medical in Florida right now having prolotherapy treatments. Dr. Hauser has lots of videos on these conditions if you haven't already found them. I'll be sharing my experience/journey there. I hope you are able to find healing!
@@HealingWithRachael hi again Rachael, thank you for replying and great to know you are in Florida. Dr Hauser seems to be one of the most experienced practitioners out there, I am going through his videos with interest. Keep us all posted, we are rootin’ for you. In the meantime, stay safe and positive, you are helping others and that is one of life’s greatest gifts. Kind regards, Alex in Norway.
@@alexandermills382 couldn't of been said better. TY, Andrea Hawaii
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.
Congrats, i did the same. Sad the med community is influenced only by symptom diagnosis which doesnt seek to understand complex issues and only seeks to prescribe a temporary fix.
Look at Dr.ross hauser on CZcams. He knows everything about this
I’ve hope you’re feeling better now.
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.
Hi Renae - do you get what I call "Lung Lock?" Random episodes of not being able to inhale normally, but can exhale slowly, all I want. It can last a few days, once 2 months. I believe the phrenic nerve controls breathing/ diaphragm, and it runs parallel to Vagus Nerve, on each side of neck. You can have a SNIFF test, live Fluoroscopy while breathing. Your diaphragm is supposed to work like a fireplace bellow & raise & lower, in tandem. If it is more than 2 mm. difference, it should be investigated. Mine was off by 7mm, but I was feeling 95% better by the time they arranged SNIFF test. They didn't know how to proceed further. Med. article in Lung India has more 411. Good luck. Scary, eh???
@@mdee860 I was eventually diagnosed with myasthinia gravis
@@renaeaz76 - aww, I am sorry to hear that. Have they stabilized your thyroid?
@@mdee860 Hi Dee and Ranae, my name is Andrea. I have had this happen a couple times and never knew how to describe it. When I seen the term lung lock it clicked. Sounds familiar and is very scary. Nice to know others have survived it. I have suspected CCI due to injury
@@keithsteele1310 - well, it's a term I made up. It is quite different from problems breathing as with Covid, or RSV Bronchitis. It is so weird that breathing in just locks - there is NOTHING I can do other than shallow breathing & so weird that I can fully exhale, if slowly. It's like breathing into a vacuum, it just locks after 1 or 2 seconds. Mine is also due to an injury, a 360° Rotational "fall" with a Jumper (horse). Many riders don't survive, most others are paralyzed, so I remain so grateful that I'm not. The neck damage is severe. I also had major surgery on right side of my neck & wonder if scar tissue has affected my Vagus or Phrenic Nerve - or do I have CCI which is causing my ME/CFS & Dysautonomia? So few Specialists, So little Time. By any chance, do you get painful diaphragm/stomach spasms that feel like a ♥️-attack & Ulcer attack at the same time?
Thank you so much for sharing! I hope that everything you’re doing will help you have a better quality of life. I also have craniocervical issues stemming from a fall with a concussion and whiplash 14 years ago. I had no idea that trauma could cause such crazy neck movement and problems. My C1 is rotated almost to the max 5°. I’m hoping chiro treatment and neck stretching/strengthening will correct the atlas and my reverse neck curve.
Katie, I have terrible Tinnitus. I have had it for at least 16 years. It was only 2-3 years ago that I found out that it was SOMATIC TINNITUS. I saw a video on CZcams and it said that if you have tinnitus or dizziness then if you stretch your neck muscles, it can get rid of either tinnitus or dizziness. I never had dizziness. Well, I wanted to get rid of my tinnitus so I went to a physio therapist session at a hospital where the girl STRETCHED my neck muscles. The next day I woke up and the tinnitus was no better and worse of all, I now have balance problems as well. I wish I never let her stretch my neck muscles. I then read on the internet where stretching your neck muscles can not only get rid of tinnitus and dizzyness but that it can give you tinnitus or dizziness or both. I now regret having it done. I also spoke to a very knowledgeable pharmacist and she told me that you should not stretch your neck muscles. Never, never. Too late for me.
Hope you're doing better
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.
Check out Ross Hauser & Caring Medical. Google them! X
@@loveconquersall143 - Thanks, I actually have watched quite a few & he really does explain so well. However, I've done further research about his group: they don't accept any insurance; some patients complained about all kinds of expensive add-ons that they recommend you purchase from them, etc. Then I read peer reviews that were not flattering. All in all, very price prohibitive unless you already live nearby. 🤔🤔🤔
Prayers & Blessings to you strong One.
Embrace your journey and all will make sense.
Broken bodies are sometimes houses for the most beautiful souls.
🙏🙏🙏🙏❣️❣️❣️❣️
That's a very sweet comment! 😘
very well said, ty
Thx for sharing your story. Sounds like you are a trooper. I hope you find relief soon. Did you sustain a neck injury at any point even if it seemed minor?
Oh girl I have the same symptons , very good info , Thx alot
This video is so helpful!! I have been going back and forth lately in mind about whether I have CCI or not and after watching this I REALLY think I need to bring it up to my neurologist to have tests run. I have at least 90-95% of those symptoms! 😅 Thank you for making such important videos! I hope your all goes well with you surgery sweet girl. I’m praying for you! 💚
Hannah!! I am so glad it was helpful for you! But it breaks my heart that you are struggling so much 💔 I hate to say it but at this point I’d honestly be surprised if you didn’t have CCI 😭 Whether you do or not I’m always rooting for you and praying you’ll get the answers and help you need!!
@@HealingWithRachael do neurologists recognise CCI and its related symptoms though...? 🤔 After suffering from all your symptoms - plus more, for over 5 years now, I finally have an appointment with a neurologist coming up, but I am so worried that I'll go in to talk to him and he'll just think or say: "what the hell is this woman on about...???". 😕 xo
@@loveconquersall143 very unlikely that a neurologist will know about CCI. better to pursue a specialist who does CCI specifically.
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.
Did she look into Prolotherapy with Dr.Hauser at Caring Medical?
Dr Hauser messaged me, said he would be happy to see me, but I live I live in the U.K.
@@lauraann4014 right. Let me just hop on a plane to FLA .
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 🙏🏽!!!
Ask for an upright MRI. Also & FYI, standard Flex Neck Xrays don't work with CCI. Esp. if you are having a brief, stable moment, or in my case when my anterolisthesis is not acting up.
Did you end up figuring it out?
How are you now?
After that I went to Caring Medical down in FL, now the symptoms are back and almost worst. Going to talk to my new Neurologist and give them all the info from them.
@@mdee860do you think a digital motion x-ray would show it
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. 🥰
Hi there! How was your experience with Stanford? Which doctor or facility were you able to be seen by/at? Im looking for a specialist. Thank you.
2:17 2:17
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.
I'm sorry to hear you're suffering. Wishing you all the best!
@@HealingWithRachael 💝💖🙏
@@HealingWithRachael I hope you don’t mind me asking, but did you have the fusion? How are you feeling?
@@candice2875 Yes I did. I honestly wish I hadn’t in a lot of ways even though my case was severe. I have a lot of videos on my channel addressing this! Right now I am in Florida to start treatment at caring medical for my instability below my fusion and I am very hopeful about it. It will be a combo of prolotherapy/PRP injections and neck curve corrections. I’ll be sharing my experience with it all as well.
@@HealingWithRachael thank you so much for your insight. I hope you get to 100% function and comfort as soon as possible.
As you know, it is a simple yet tough condition, because of very little knowledge about it in the medical
community. You are not alone, there are so many of us.
For example, I was diagnosed with ALS at 17 because of vagus nerve compression that makes me unable to swallow ( I choke) and causes a million other motor dysfunctions. Was also diagnosed with congenital inner ear deformity, genetic migraine headaches, tmj dysfunction, pots, IBS, rheumatoid arthritis, PCOS ( endocrine disorder), fibromyalgia, sleep apnea, seizures, and PSYCHIATRIC issues because no one could put together the pieces for years. Somewhere around 60 specialist physicians and surgeons couldn’t figure out all these symptoms and illnesses were from my neck, and most of them believed my problem was psychiatric for 15 years.
I was on a huge list of constant medications as a teen which shut down my liver over the years and had to have a tracheostomy to breathe and feeding tube for liquids.
After self diagnosing, suddenly every doctor I had seen before agreed with me.
I had and have debilitating pain, and to choose between the neck/ head pain which frankly make me disabled, and going for fusion is a very difficult decision. Even though I haven’t gone through it yet (waiting for my surgery date), I can to a large extent understand how you feel.
Wish you the absolute best with your health and recovery. ❤️❤️🌼🌸👍👍👍. You are super intelligent, beautiful, and strong, and can do this. 👊👊👊 💖
Thanks again for sharing your journey.
I have eds too and i have cci... pots and intracraneal hypertension... i have a lot of that symptoms and i didn't found somebody with this too, i have convulsions with breathing difficult, my levels of oxygen gets very low and it's horrible, the pain doesn't response to medication, and i probably have tethered cord non diagnosed too, with chiari... thank you so much for sharing your history, i'm feeling less weird now, i hope you're feeling a little better now
So, i'm unable to walk right now, not bc of paralysis, it's most like a kind of extreme debility and parestesis, idk if it's caused by my cci or another thing but it's very crazy how much is in relationship with this condition... wow (pd. I'm from venezuela)
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
How you feel now
Just saw this video.. Have you been diagnosed with Odontoid Retroflexion? I have it and have had vertigo for 12 yrs. Gastroparesis juust starting to set in over the past few months. Learned that from your video, thank you. Retroflexed Odontoid is pushing into my brain stem and squishing my Vagus Nerve.. which controls a lot of the automatic body systems.. breathing, heartbeat, digestion etc.
Hope you will get well soon!
Did wearing your neck brace also help with your POTS symptoms?
Thank you for your story
It’s just like mine
I have been trying to get doctors to listen to me about my symptoms but for many years all they do is a la carting my symptoms
Even when I finally found information on cervical instability and told them that I think my Vegus nerve was being affected by the instability they still wouldn’t look at it as a possibility
I have almost all of the symptoms that you d
I hope your treatment goes well
I will be having an MRI soon and then an appointment with a surgeon
I hope that I don’t have to wait for months for an appointment it very disheartening having these symptoms with no relief
Great video thank you for sharing all of your symptoms. I wanted know which specialist doctor was able to diagnose you with EDS and POTS?
I was diagnosed with EDS by a geneticist and POTS by a neurologist!
Rachael Elizabeth Thank you so much ☺️. I will definitely bring it up to my neurologist in regards to the POTS. If I can remember I ended up having a bad reaction to Lyrica and now my coordinations is worse as well as my vision and my iron binding went down to 7. I ended getting an iron infusion which did nothing for me. I can barely drink or eat anything.
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!!
I hope you find answers and help soon! ❤️ I was recently diagnosed with lyme disease (it took 9 years to be diagnosed), and I’ve heard many people with MS have lyme as well (just in case you hadn’t ruled it out). But whatever it is, I just hope you find something to help you feel better! ☺️
@@HealingWithRachael thank you. I saw about your Lyme, I hate that it all takes so long jumping through the hoops. Thank you for sharing.
Praying for you!
If you're in the USA, look up Dr Ross Hauser! xo
Glad u get this Young, I suffered longer than u r old. Bout have it beat, that area and vague are pretty important
You said you beat it? Meaning you’re recovered? How?
@@staceypollack808 any updates
???
Great content, you seem so calm about it all. Ive been struggling with neck issues, vertigo, and lots of facial issues, weird seizure type episodes where u feel confused the doctor calls its Tics or stress induced tics. i think it all is coming from my neck . Love the honest video. How are you now??.
Hey how are you now man? Been having weird symptoms too possobly due to neck stuff. You still playing WZ?
I'm so sorry to hear about your CCI and dystonia.
I hope there is an affective treatment for you.
I have cervical dystonia and I think your neck brace would help to stabilize my twisting neck. Where could I buy it from?
Happy New Year 🎉
Are you better, post fusion? Great video.
You have all the symptoms and after watching the videos from caring medical. I agree , look up on CZcams. , fantastic information. Please look and watch the videos before fusion. Good health to you.
Please, let us know how your treatment went. Hope you are fine. Thank you. 🌹
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
I also have the nerve thing/spasms and flailing I was put on muscle relaxers which helped a lot but whenever there's any pressure on my neck they're triggered
God Bless you I hope you feel better.
I am so happy to find your channel and know we're not alone. I believe I have the Cci and pots. I've been to so many doctors this is truly a nightmare. Do you have chest pain or stomach pains? Have you thought of bone marrow prp?
Hey, I am actually in the diagnosis process and I don’t have these problems but I watched this anyway bc I find it interesting. I would just like to say that the temperature intolerance can totally be caused by the compression you are experiencing. I actually had complete impingement on my spinal cord in my back from an accident and my legs are actually paralyzed. i had temperature issues for probably over a month afterwards as stuff was still adjusting and getting used to its new state? I’m not a doctor so I’m not good at explaining it but I had been told that it doesn’t affect temp regulation by a bad doc and that it certainly can by numerous other docs! Some docs just aren’t as good, esp dealing w rare conditions, such as spinal cord injuries or EDS! My back was one of the most flexible places about me so honestly I’m not sure if the hypermobility contributed to the severity of the injury (as I’ve been told that it was totally bizarre how severe I was injured, “worst they’ve ever seen,” ect ) but I don’t hear a lot about hypermobility in the spine so if I am diagnosed with hEDS then it would certainly only lead me to more questions 😂 being non-weight bearing on my legs, the joints have actually became a little less mobile (it’s normal after SCI) so I imagine it makes the process a little more difficult but we’ll see, won’t we! Thank you for resources like yours!
God Bless, I can empathize.. My name is actually Andrea, under my sig others name on tube.
May God bless you from this instability condition CCI and may you get better and Heal thank you for sharing and educating us of this condition, God Bless you... Have you seen a Chiropractor if not Go to one.
You mentioned that you do physical therapy. Which exercises are good for your neck?
I have all your symptoms except seizures and swallowing. I did have seizures but don’t any more. Have had Myalgic Encephalomyelitis TBI and injured spine in crash,sick since 2005. Mostly home/bed most of day. Am pretty sure now it’s CCI. Feels both tragic and hopeful. TY. Hope you are doing great.
thank you SO MUCH for sharing.
Thank for sharing all this,I have some of those things going on ,an my neck is all messed up.
I wasn't in an accident or anything like that but I know I have this. I got it from years of laying down with my head bent forward warching TV and playing videogames. I have most of the symptoms you described. Unfortunately none of my doctors have diagnosed me apart from herniated cervical discs that came up in the MRI.
I don't know where to go and I don't jnow what to do. I'm living a nightmare.
Hi Rachael,
Do you have problems driving or riding in the car? I nearly pass out. I think I have POTS and have learned about CCI just recently and believe it to be the cause. I also believe I may have EDS. Csr rides, hot showers, and alcohol are major triggers for my symptoms.
Thanks!
Im sorry sweetheart. I really feel for you. Im going through some of that stuff too and am about to see the spinal surgeon.
Could I ask, what doctor you have seen? I've exhausted "good" spine doctors in Michigan and I'm getting no where with the Cleveland Clinic. I'm told I have Conversion disorder. However after having a DMX video xray, it shows my C1 sliding left and right too much. My PTs have all said I have positive slide in my C1, which means there is instability.
When I turn my head certain ways, my symptoms are brought on... I wish I could find a doctor that doesn't have their head so far in the clouds, they don't see the Zebra in front of them.
Thanks and best of luck to you.
Try a Chiro. I spent 13 years trying to find a real doc, including Mayo Clinic. None worked. Then I found a good chiro. They have techniques that can stimulate nerves and ligaments and cause regeneration. If you are healthy enough, also try inversion therapy and if possible pushups. Increasing your neck size will work wonders and pushups will make that happen. Worked for me but it took a few years.
How you been since surgery?
I wish I could go get all these tests..no insurance really sucks
First and foremost I hope you are doing well, and thank you so much for sharing your journey! I am seeing a surgeon in the same office that you went to, and I have a couple questions for you. Is there a way to pm you here on CZcams!
huh, ive not heard of this before. But i have a number of these symptoms. And its been getting worse slowly over the years. I'm going to bring this up at my next doctors appointment. Though im curious about how you were diagnosed? My doctor doesnt listen to anything i have to say. I've had dysphagia for over a year and my neck muscles in the back seem to be just getting thiner and smaller and same with my nuchal ligament. I get the tingling, the ringing in my ears, the brain fog and even sitting down is hard. I feel so unstable. I'd be curious to see if this is something I have or not.
Hi I'm new to this I haven't being diagnosed I have all the symtoms you have the nerve pain I also don't have vision problems.. I bought a soft neck brace which helps a bit, but I feel pain in my face after a while
Thank you for the video i was wondering where you got the neckbrace i need to order a new one mine is not holding my neck in place good enough .
Hey! Thank you for this video it was very helpful. I'm going through a similar path and have a couple questions to ask you!
Did you see a clear relief of symptoms with the collar?
My diagnosis is not very clear because of a couple reasons:
I am positive to CCI & AAI in the measurements but negative in the physical traction test with the halo vest...
Indeed the halo vest test didn't go well, as I didn't feel any better, I actually felt a bit worse with the traction halo vest, the doctor made me wear it for an hour or so on a fait amount of traction.
I have experienced many times a relief of symptoms were the more I spend time outside on average, like moving or walking, the more my symptoms get milder and tolerable.
Did you experience this too? I hear a lot of people with CCI that say the more they "move" around the worse their symptoms.. which doesn't fit my case so much and makes me even more confused... Bit then again it's not that clear because there are some days I feel horrible just stepping outside and have to go home..
Doctor's say heds is probably negative for me however hyper mobility probably positive.
I don't know what direction to take. I'm trying corticosteroids next week for a month and see if it does any difference in my symptoms.
I have doctor's that feel I'm more of a post viral syndrome thing and others say it's the CCI & hyper mobility thing but the problem is that in reality I don't fit so we'll in the CCI as the halo vest didn't work.
I'd love to get your opinion on the collar/halo vest test, I'd be super great full I'm so lost rn..
You could have a combo of several underlying issues which is what I'm experiencing both neck issues and post viral as well. Have you had any improvement or found any clear diagnosis? Hope you are feeling better!
Hey man any update?
What type of doctor finally gave you a diagnosis? I’m dealing g with all of this and doctors are having trouble figuring out what is wrong. Thank u!
I definitely have all of those symptoms too 😞 It really sucks.
That flailing sounds like myoclonic jerks. I also have mdds & tremors too now - which is so awful, and I can barely walk or hold things. The longer you're upright with this, the worse it gets for sure 😞 I think I should be tested for Lyme disease as well.
That neck brace, will it make your CCI better or worse? You don't want to stretch those ligaments out more! Does your speech get affected too? This thing definitely affects the brain & the central nervous system too.
Look up Dr Ross Hauser at Caring Medical - that guy & his clinic sound like they're right onto this! I wish I lived in the US, I would definitely go to him if I did. I'm trying out chiro & prolotherapy injections here in W. Australia. We'll see how they go...
Hoping, wishing & praying that everybody here gets the answers & treatment that they need asap! Much love and relief to all 💞🌹😘
I think Dr. Hauser has been sued 7 times for malpractice
Thank you< i went back to neck doctor and he wants a MRI, Like I was afraid of he don't know or beleive in this. But all these symptoms are so common with CCI, I had the symptoms for about a decade. Could lean one direction and neck muscles would instantly tighten so much and compress spine. Been coming and going to know it seems compressed all time and can't get sleep or think clearly, back of low head/upper neck seem the worse for symptoms and neirolical issues. Get voice box spasm that feel like soimeone is chocking me. I got bad central sleep apnea when pain is the worst. Head exploding seems like on me its raised cranial pressure from I suppose blood vessels not returning good?? Neauologst only mess with Brain. Been looking for someone around hear thats heard of this. My eyes are going cookoo now. Depression is the next stage for you if you don't get help, Good luck!
I would like to ask for suggestions for a good neck brace that is not too expensive. And hopefully a neck brace that can be purchased or ordered without a prescription.
Hi I have all the symptoms that you have, I take pain meds but I’ve asked to be sent to pain clinic, I feel like nobody takes me seriously 😐best wishes 🤗💕xxx
I love my neck brace! I couldn't sit up without severe pain before my brace.. I recently got a intrathecal pain pump to control the pain.. but I have a lot of what you are describing
Is the pump controlling your pain? 💖
@@truthprevails7085 Yes, they help alot
What type of brace do you wear
Hello New supporter here!
I am a fellow zebra with classical EDS. I also have CCI and my spine is fused from scoliosis but thats from t4 to t12. I will have to have my neck fused at some point too. You are amazing and strong! I wish you the best. #ZebraStrong
Hi Kristin! You are so kind, thank you 😊I'm sorry to hear you suffer from EDS as well/have had to have spinal fusions. You definitely aren't alone! I'll be cheering you on!
Please look into prolotherapy. Good luck
@@heddysue0655 Unfortunately I am past the point of that being an option. I have bad brainstem compression that prolotherapy cannot help. Thanks though!
@@kristinwallace6551 I'm sorry to hear that, I had a fusion on L4 & L5 it was traumatic.. I hope you heal well and fast, being young you should. Best of luck..
@@heddysue0655 - I agree, and most studies (NIH, etc) don't follow recoveries after fusion more than 24 months out. The older we are, the longer it takes for nerve regeneration. I follow Pain.org blog & most people with fusions aren't that happy. I know of one 32 yr. old that is happy. In my case, it would be a multi-level fusion c4-c6 or c7. The surgeon gave me "only 60% chance of some improvement in my shoulders!" Not good enough odds for the severity of that operation. I have heard more people (& surgeons) are happier working on Lumbar issues as they have more physical space to work in.
Thank you for your video. Being assessed and can relate to all of your symptoms. May I ask the name of your neck brace. Thank you. :)
Did you get a vertebral spine surgeon evaluation? Did he told you about ligaments surgery? Overall, I wish to you all the best.
Hi, I suffer from this too. How did the surgery go? Are you finding improvement?
I’m sorry to hear that! I have a playlist on my channel for CCI where I have all my videos relating to it and my experience. There is a recent Q+A where I go into detail about that. All the best!
Do you adjust your neckbrace tighter when laying down in it? I have noticed when I recline or lay back with it in the car, that my chin starts slipping into the collar, even though when I am upright it is “properly fit”.
Thank you so much for sharing! Also thanks for the term neurogenic seizures and Dystonia. I have heard dystonia but not neurogenic seizures.
You are welcome!! I hadn’t heard that term before either, but it makes sense as the uncontrollable movement can come from the neck/brainstem compression. As for the brace, I do notice some shifting but typically not enough to tighten it!
The problem I have is that I see a video about injuries to the head and neck and then the person starts listing all the issues and I instantly feel I have all of them.
What’s the best brace to wear please?
UK won’t fuse :/
I have some of the symptoms that you described 😕
What kind of doctor did your diagnosis.
I don't know where to go!
Hi there, you mention CCI and gastritis, do you have anything you can refer to - article or similar? Cannot find anything on the internet, but experience neck problems and GI problems at the same time. Thanks and all the best to you.
Watch dr Hauser’s videos from Caring Medical in Fort Myers Florida. GI problems can also stem from upper cervical instability.
Do you have extreme tightness at base of skull, in neck, shoulders, face etc?
How about in glutes?
Yes
yes have that as well
Yes I can't wear clothing around my neck/upper shoulders. It's too painful
I just happen to come across your video looking for something and you were explaining to me everything that I’ve been going through and I’ve been doing a lot of research on it what kind of doctor do you recommend for these things the hyper cranial pressure migraines with nausea the jerking when laying down shortness of breath I seen you went and had an iron infusion done my iron is pretty much depleted and I’m having symptoms with that on top of this other stuff but I don’t know which way to go..Any advice would be greatly appreciated I’m in the US.. you’re not alone would love to chatI was diagnosed with Sjogren’s and fibromyalgia I had major back surgery as a teenager where my spine is fused from like my C4 all the way down to my s1 This recently started happening in the past two years .. how long did it take for you to get your iron levels up if you didn’t get ferritin infusions? and what kind of doctor would order that kind of test your general GP?..I know I think I’m in the wrong profession I should’ve been a weather woman! 😂.. did you say heat intolerance can be due to CCI? I cannot do heat I can’t do extreme temperatures all together lol
Look up Caring Medical in Fla. dr hauser
Have you heard of The Caring Institute (or clinic?) in Florida? They have a channel here on CZcams and they talk a lot about carnio-cervical instability. They do Prolotherapy to address it!! It superrrr expensive. I’m not sure if there are other places around the country (or outside of the country) who may be doing it for less $$
*cranio
I think they are scammers
@@Andreylarin1I got one done and it only made pain and symptoms worse and they keep pleading to me that it will get better with more injections when my pain went from 6 to a 9 out 10 with their treatments..
Can you tell us who is doing your surgery? Thank you for sharing your journey! It is so helpful to me (mom of young woman with EDS ).
I’m so glad to hear it was helpful in some way. Dr. Fraser Henderson in Maryland will be doing my surgery 💚
Thank you so much for sharing. I too am interested in what procedure is planned. Blessings to you for healing
@@denisemorris5583 try prolotherapy instead ?? Caring Medical of Florida
I need a brace like that. Did you get it from your doctor?
If I only have the struggle to hold head up/bobble head symptom with neck pain does that mean I have cci? Hope u get better soon 🙏🏼
Hi honey i have nearly all your symptoms. It can be vegus nerve pinched in C1-C2. You can have some nerv pills. The nerv can cause tenses in the muscles. I also have Chari 1 but some doctors sugest upper chiropractor or prolotherapy instead of decompression operation. Good luck hope you will feel better.
Did your ringing in the ears (tinnitus) stop when you started the neck brace ?
Rachel, I am in the middle of seeing different doctors and wanted to ask you what physical symptoms apart from not being able to hold your head were due directly to CCI? Was the strength in your neck deteriorating over time? Were you able to do neck strengthening exercices for CCI before the fusion? Dod you hear any cracking in your sub occipitals? I'm asking because it was suggested to me that my problems might be due to TOS and not CCI. Trying to avoid expensive tests etc. and keep sane meanwhile🙂
So is it cci or tos
Hope you are improving.
Just a comment that it would be great to organize symptoms by a more specific source.
For instance: gastroparesis is due to pressure/compression on the vagus nerve. This means that your instability is affecting the jugular foramen. Whereas other symptoms are due to pressure, compression on the brain stem, which occurs at the Magnum foramen or c1-c2 level.
god bless you rachael. such a warrior. amazing attitude.
Thanks so much, I have many symptoms but in Mexico it's like nobody knows about this
How can I get a brace like that? Ty for this video 💚
Thank u .i have some of the symptoms but no doctor can understand wat it is and they just tell it's phscycologicall problem
Your links are not working. The only pain relief foundation I could find is in the UK
I have intracranial hypertension and craniocervical instability and it compresses my jugular and vagus nerve along with squishing the hell out of my brain and I have every symptom you mentioned…mine was untreated for 2 decades and has resulted in me missing most of my 30’s and 40’s due to a whole host of medical problems and complications…and my neurologist won’t listen to me…even getting a lumbar puncture was hard to get and by the time they did it the pressure in my head was 39mmHg ….normal is 8-12mmHg…I was going blind and suffering major memory, cognitive, depressive, and anxious symptoms big time!
Have you heard of atlas orthogonal? You should look into it they adjust your neck with an instrument so the C1 and other vertebra are cleared from causing inflammation around your brain stem. It sounds like you have a lot of symptoms like me and it could help you too.
@@wesporter2176 thank you so much for sharing this with me, I appreciate it and will definitely look into this!
@@wesporter2176 thank you so much for sharing this with me, I appreciate it and will definitely check it out
@wesporter2176 I'm having Atlas Orthogonal from August 29 2023 until September 5 2023. I will comment here with the outcome 🤞
@@darrenwray285 Yo, how did it go
Hi just stumbled onto this video and wondering how you are getting on? Have you looked at Dr Houser YT videos Caring Medical on cervical instability and prolotherapy? They treat this all the time and have a lot of success... best wishes with your journey.
Noises dizzy crunches! Numbness and pain at night! O u just said it
where did you get your neck brace from?
How long/when do wear it?
Thx
Caring medical prolotherapy
Have you done it before?
I'm going to carry medical this week to see doctor Hauser does that where you went
Might want to look up their reviews first.
I was just going to say same thing please go
Do you have hEDS? also is the summer worse for you?
For two years now I have been living a nightmare. I have literally thought of taking my life. I can't do that cause my kids so I push on everyday. I have many symptoms, severe neck/shoulder pain, dizziness, limb pain, tingling, excessive sweating, muscle twitches, head pressure, weakness, nausea, blood pressure issues, digestion issues, sleep problems, shortness of breath, severe stress, anxiety, depression, vision issues.
So many doctors in state and out. Nobody could find the issue. I still have diagnosis but March 18th I'm being tested for CCI.
How are you being tested? I’ve also been in misery for 2 years. I’ve had countless scans and tests and nothing has been found.
@@bricebequette9435 Dr. Saperstein in phenox az.
I have all these symptoms too, i too think of taking my own life but my kids are the only thing that is keeping me going
@@nektariosandmagdalena4985 Have you been diagnosed with CCI?
Hi I ended up on your video after looking into this for myself I have all the symptoms that you are talking about and I was hoping I could get in touch with you to discuss your diagnosis and treatment. Maybe email or Facebook? Let me know thank you, Nic
How can I get diagnosed etc tests or scans?