Its so sad that the patient needs to virtually become the doctor while they are suffering. Rachael is a testament to bravery. Insurance companies are the biggest hinderance to people healing. The people they employ to deal with patients are probably the least suitable and this is by design. This is my experience and the experience of everybody....

As a medical student interested in Neuro thank you for sharing your story.

The medical gas lighting is absolutely real. I’ve been fighting for myself a long time and still no help. I’m in Florida. I will be suggesting the scans mentioned here and watch the meltdown from the inexperienced professionals here in the Florida panhandle. I wish I could visit Caring Medical, but I need my care covered on insurance 😭

@kayecorsello6770

4 ай бұрын

I'm also in Florida and experiencing the same problems. It's hell.

Another condition that has similar symptoms is vitamin B1 or B12 deficiency affecting the vagus nerve & autonomic nervous system & of course is much easier to treat

You are a little beacon of light little sista...just knowing about this will help a lot if people...🙏

Thank you for this video! Definitely helpful! I have EDS and all the symptoms of CCI and Chiari. Have seen 3 neurologists and had a horizontal MRI (pre-EDS dx) and they all found nothing. I also live in a place where CCI/Chiari is just...NOT on the radar. Most patients have to travel across the country to get it dx’d and taken care of. Which is my next step.

Rachael, thank you so much for making this video. It has been a HUGE help! It's nice to know others that are going through the same challenges. Prayers for continued healing.

@HealingWithRachael

4 жыл бұрын

I'm so glad it was helpful, Laurie! :)

I have every symptom. I do have osteoarthritis that we have known about since I was very young. I've had several injuries to my neck back of my head where the brain stem is and the lower lumbar region also the thoracic area is bad because of the osteoarthritis. I have TMJ,IBD, paranasal sinus disease, I have been in such bad shape for years but the hospitals and dr's I've seen don't know anything about this stuff and have actually treated me so badly. All except one neurologist I seen a few years ago she was running tests and ordered me to go to the autonomic lab to check for dysautonomia but I never got to the lab because I lost my insurance. But I'm so grateful you made this video because everything you go thru with this with the symptoms is exactly what I go thru I don't want this to be true but I need answers so I can get some treatment some help before it's too late my condition is worsening. I've told my mom so many times it feels like my neck is too heavy and like something is going on in my brain stem because that's where the electrical shocks seem to start at then goes into my neck upper arms down my spine and I also feel it in my face and forehead where the frontal lobe is and now it's in my stomach and chest. Which the er dr said she thought is bcuz of sleep seizures and partial aware seizures so I get that weird uncomfortable rush of electricity going up my stomach into my chest then the seizures happen then I get this feeling in my frontal lobe region like someone shot novocaine into my brain then I get this awful smell and taste it's like finger nail polish remover for years I thought I just had a nose like a hound dog and was really smelling my nail products in my room so I finally put it my bathroom but the smell didn't go away and I figured out it always happens when I have the electrical stuff e.t.c and my muscles also will tighten and jerk and I get this strong tremor inside my body. There's other issues also like confusion brain fog pain through my body and my neck and back especially my muscles are weak and sore I can hardly lift my arms I've always had sleep issues gastrointestinal problems bruise easy metallic taste in mouth there's always a problem with them taking my blood my veins always bust I have tingling and numbness throughout my body mostly my left hand and arm but also my other one and my feet sometimes I wake up and my arms are like dead weight like there not there sometimes my left leg does that also I'm very sensitive to sounds lights touch cold and hot and have issues with blood sugars going high they said hyperglycemia 15 yrs ago in the past few yrs having palpitations all the time especially when laying down and also pre ventrical contractions and now high blood pressure. I have hearing issues, eye sight has worsened, dizziness, balance issues, I have a feeling of adrenaline rushing thru my spine that's been going on since i was a teenager. My stomach muscles feel like I'm being punched when I'm falling asleep it wakes me up. Fam members say they believe I have sleep apnea and when I've been in the er several times being hooked up to the monitors as soon as I fall asleep my body jerks me awake i feel like i can't breathe the monitor goes off and says apnea. I told and showed the er nurses but they are like it's ok. I was supposed to have had a sleep study but again I lost my insurance. About 17 years ago my stomach muscles felt and looked detached from my stomach wall hard to explain but i went to the er and they said the round ligament wasn't attached. I have problems with my shoulders and ribs feels like they're going out of place then back in. I am all of a sudden allergic to like everything. My ears have ringing and also this swishing sound like pressure and water is moving deep inside them mostly when I'm laying down and move my head.i wake up covered in sweat but freezing. I have low vit d very low, nausea but can't vomit haven't for yrs, have no gag reflex haven't since I was very young, I have digestion problems. I have trouble swallowing my food. And many other issues. It's too much especially when I'm not getting help I feel like my neck and back is getting worse all the symptoms are getting worse and new symptoms keep coming. But because I haven't had insurance my mom just calls the squad when I get real bad. They don't act like they care or like I'm on drugs which was proven that I'm not then they say it's anxiety I'm like ok I'm in counseling have been for 8 years my drs and counselor don't even have me on any pscych meds say I don't need them that I have some depression and anxiety coming from the physical health issues that ate being let go. So then the er drs will run a few tests that won't even show up what needs to be seen and they'll say we did what we can do and we aren't seeing anything real bad or life threatening at the moment. A few years ago they admitted me 4 days and did a spinal tap and found nothing at least not in the tests they ran what they were looking for. So I guess there's no fluids leaking thank God. This is very complicated. But I think I have an idea of what's going on here with all the research I've done in the past few yrs because I have had to search out answers. And I won't self diagnose however I feel like I have an idea of what's going on and I have asked the hospital to please put me in observation so they can do the mri and told them what i think may be going on and I'm in torment with this it's affecting my heart rate causing apnea affecting my blood sugar my ketones were sky high when they checked my blood but they did nothing also my blood pressure going up the squad had to give me nitroglycerin 3 times in 2 years I feel like my brain stem and spinal cord is compressed which can be very serious there's days I can't walk or my legs go out the electrical shocks are unbearable and I'm losing feeling in places in my body there's numb spots on my back e.t.c my neurologist that i had before i had only seen a few times but she said my gait was unstable and noticed I'm holding my head to the right. Also I startle so easy and it is scary feeling. My reflexes aren't right There's more but i need insurance and good drs so I can get help. I know there's no cure and I don't want this but I know something's wrong and this fits and I just need help I'm now 40 and have been misdiagnosed all my life and I'm getting worse.I can't work and without proper diagnoses get ever n get assistance. My muscles are wasting.I live in my bed ppl assume I'm lazy but I'm not I'm suffering and have no help medically or at home I'm single and trying to care for my elderly mom but can hardly take care of myself. I'm a fighter so won't not give up but I've kinda given up on the medical system and I put my faith in God he's my healer and has kept me all these years. I'm so grateful for God grace. But I just think it's not fair that drs treat ppl bad just don't care assume the worst about the patient or they just don't have the knowledge they should have. But thanks again for bringing awareness. May God bring you comfort blessings and joy.

@Chiroman527

3 жыл бұрын

LB, My God what a Spot On Description of the conditions that many sufferors have, Including Me. I'm 69 YO. I have Cervical instabilities , but also as you have described , same in other areas of my spine {Lumbar, Thorasic and Cervical). As Rachael states ....... So hard to Live With. Man, is that an Understatement. I suffered a fractured right femur (Thigh) playing football in 1966. After traction in the hospital for 6 weeks and then placed in a body Cast for 2.5 Months (at Home in a hospital bed), when the cast was removed , my right leg was 1 inch shorter than the left. So, either the bone was not set correctly and my parents - immigrants from Europe, or the Local Orthopedic doctor thought to seek proper corrective shoes. Nothing was done about, so wnt about life , limping when I got tired. After 15 years or so, at age 33, I started to get lots of Lower back Stiffness - not very painful, but lots of stiffness. A Chiropractor at that time said to me as I walked in the door: "Oh Boy, You have Problems, and You will have more Down the Road.".... Holy SH*T was he right. The shortness (uncorrected for 18 years) caused my spine to twist and bend, and the right hip droops . The Scoliosis now at 25 degrees - considered low / moderate. That malady traversed to the Neck and 2 major Verterbrea in the Neck: The Atlas and Axis verterbrea which meets the skull. Now , I suffer with lower back pain and stiffness and also into my neck and head. Rachael describes very well all the symptoms experienced; no need to repeat them again. For the past 10 years , I embarked on addressing all these issues which have progressed pretty quickly. I wear corrective right shoe now to help to stabilize any more drooping, but it really is too late !!! Pain Management Doctor visits for the past 10 years to monitor and treat the pain. I have consulted with 3 different Neurologists (none of which have focused on this CCI issue), and 6 different Spinal and Neuro Surgeons , all of which said that definetely No Surgery on the Lumbar, maybe.... Maybe on the neck with fusion, if it becomes intolerable. Been to PT 7 times, Chiropropratic sessions help a little, but one I was visiting in October - December 2020 , came down with COVID just before Xmas. MY wife freaked, as did I. Stopped those sessions. But it did help a little. I have been complaining to my wife of 46 years everyday for years. I stopped that because I was Brow Beating her. Then I found Caring Medical KZread Videos about Cervical Instabilities and the major affects to the Nerves that stem from the Central nervous system through the Atlas and Axis (the first 2 verterbrea at the top of the neck), that become impinged - especially the Vagus Nerve, the 10th Cranial Nerve - the largest in the body which connects major organs (Heart, Liver, Stomach, Lungs and the Brain). Look into the Vagus Nerve - it is the newest attention getting news around the medical world. I've had many MRIs taken of the spine over the past 10 years. But after seeking my own info, Dr. Bergman , Dr. Mandell, and now Dr. Ross (Caring Medical) have provided enlightening Info that you will NOT get from your traditional doctors... "take a pill for this Ill" . I guess the moral of my story, is Shame on Me for waitin f so Long for seeking help. Because , as I left these issues untreated, major problems have arised including lits of Arthritis in the spine and facet Joints that Crick and Crack all day long as they Rub together. I intend to schedule an appointment with one of the Neurologists Rachael provided here located in NY. That's where I am. I pray for all of us. Unless you suffer from this, you simply don't understand what this does to the Overall Well Being: itr affects EVERYTHING : provokes anxiety, depression, and on and on.... Like a Throbbing Toothache that just won't go away. Makes your Life Miserable.

Speaking of instability, ribs going out of place sucks on top of this also ha ugh. Great vids you have. Thanks.

DMX, or digital motion X-ray, allows the best images of CCI. That’s how mine was discovered. Prolotherapy can provide more stability by filling in lanky ligaments to be more robust and hold everything in place. Expensive w/no insurance but no surgery and really helped me.

@supesisfodder7427

5 ай бұрын

But not everyone can afford it How much was it and how many sessions?

Thank you for all of your time and effort sharing your story. I am so sorry for the things you have gone through, your kindness and patience really shine through your videos. You are helping so many people that are in difficult situations, they and I are so lucky for you to be providing this information. You are making the most of your situation by helping others and I hope that you are able to find relief and improvement with your conditions

This video was very helpful, thank you so much. I hope you are doing ok. The way you talk is very calm and collected and so easy to listen to for me and I am sure everyone else. Thank you again

You're so awesome! This video helped me so much! This information is so great and so valuable. You've probably helped so many other people by making this video, too. Thank you from the bottom of my heart.💛

@HealingWithRachael

2 жыл бұрын

So glad to hear it was helpful, Gavin! Wishing you the best :)

In UK with no medical insurance other than free National Health Service treatment which was not sufficient, needing to pay for holistic treatment and advice !

@ernesto2908

Жыл бұрын

Did you get any doctor to get a diagnose? I am in Edinburgh

Great video Rachael! Thanks for sharing this info. I’m starting down this path myself and it’s quite frustrating. Thanks for the info and inspiration!

Thank you for this very informative and validating video. I'm very grateful to have learnt something new regarding the recent Upright MRI with flexion and extension I had done. Sure enough, none of the criteria you mentioned was evaluated in my report. The MRI was ordered wrong. And nobody knew to order a rotational CT. Lovely. I send you much happiness to be found in all the wonderful, little things in life!

@HealingWithRachael

5 жыл бұрын

I’m glad this was helpful Amanda! Good luck in finding answers 😊

Thank you this is a very good video! I had an upright mri done some months ago and my neurologist said its „fine“ and he even looked at it with the people from the radiology department. He said that I have mild scoliosis and my upper vertebrae are rotated to the right. I dont know if he did all those measurements you mentioned since he is not a specialist🤷🏼‍♀️ because whenever I move my chin forward and a little up I hear something sublux/klick in my neck. I will probably get it checked in some years again. Also: I started doing a special type of physical therapy for my EDS. Its with a „giger md“ machine. I really recommend you to do some research on it as it might be something that could help you with your symptoms and I know that there are physical therapists in the USA who use this machine. There are a lot of videos on yt of people who used it for all kind of problems. Have a nice day💜

@craniocervical_canada

3 жыл бұрын

C2 rotation can result in CSF flow difficulties. Look for Atlas orthogonal technique but only with a practitioner who has the proper vectors. Dr. Rosa NY is a good source for the proper imaging and guidance.

Great video, plan to schedule appointment with Hauser neck center soon. Thanks for your help....

Thanks for the video! I find it much easier to understand info from a video rather than trying to read it on an Instagram post or something. And thank you for sharing your information with us!

@HealingWithRachael

5 жыл бұрын

You are very welcome!! I'm glad it was helpful!

Thank you!!! Huge huge help. I’m in this boat.

Thank you! You've helped me so much!!!!!

Thank you for this video, I am going to get tested in may. Finally.

Thank you Rachel, what are you doing is great...give your perspective for real from the patient side. Nobody even Neurologist or Rheumatologist do the right test in patients in order to find that kind of conditions... Thanks again!👌👍✌️ What doctor (specialist) did your diagnostic?

Thank you for this video. I find it easier to watch videos like yours than to read a lot of information. Is there are reason why the imaging for AAI is done separately as a CT and not with the MRI for CCI? And what kind of imaging do you need for tethered cord?

@HealingWithRachael

5 жыл бұрын

I am glad that it was helpful for you! To be honest I'm not entirely sure about the CT vs. MRI for AAI. My biggest guess is that the CT has a clear picture of the bone and it's very quick. It'd be difficult to hold your head all the way left and right for as long as an MRI takes. For CCI it's important to have an MRI because it shows the brainstem, etc. :)

@lashawnab.441

3 жыл бұрын

@@HealingWithRachael yeah I've told my drs I need three mri but they won't listen.

@truthprevails7085

2 жыл бұрын

@@lashawnab.441 👎👎👎😡

Honestly I’m in Canada and we don’t even have any upright mri in the country. I had to send my flexion extension X-rays to an American company and pay out of pocket to get part way to a diagnosis. Radiologists here don’t even bother doing the measurements 😢

Dr. Rasouli at Cedars Sinai in Los Angles, California sees (and has successfully fused) quite a few of our local EDSers with CCI. I'll be seeing him in October

@HealingWithRachael

5 жыл бұрын

That is great to know, thanks for sharing. All the best with your appointment!

@alisa1741

4 жыл бұрын

Hannah Bailey -Hi What is Dr Rasouli full name? I live in LA CA. I feel there is instability but it’s true many doctors not aware. I am now having torticollis/dystonia off/on and neck feel loose than before.

@lauriebarene9939

4 жыл бұрын

Hannah, I live about 90 miles from LA and have had NO success in getting help. I'd love to know how your appointment went. Thank you in advance!

@Hannah-cy3ri

4 жыл бұрын

@@lauriebarene9939 Not great, wouldn't order flexion extension MRI was adamant that it would show up on supine MRI and CT. Ordered CT but never called me with my results (I called his office regularly). Gave up. I'm trying to get into see Dr. Grant and Stanford before giving up and going to Henderson.

@lauriebarene9939

4 жыл бұрын

@@Hannah-cy3ri how frustrating and heartbreaking that must have been. Thank you so much for the information, I'm going to cross him off my list. If you have any luck with Dr. Grant I would love to know. Sending thoughts and prayers for a positive outcome for you, and everyone else searching for answers.

Can I ask did you have lots of neck pain? I could have no pain if my head was kept in traction with my chin extended up. The traction at my pt puts my neck forward chin down which hurts. I have Eds gave it to all my kids. My brain pressure they never looked for a answer and said it's prolly my Lyme. I have nausea, pressure behind my eyes, trouble swallowing and severe neck pain. They just say I have bulging towards my spinal cord and boney growths in those areas. Everything they do hurts and makes its worse. I also have MS. It just all sounds like your symptoms.

I had a skull-C2 fusion in 2014. This is a great informative video!

@rikybologna3579

3 жыл бұрын

How much it affected your neck mobility? Thank you and I wish to you all the best.

This is very helpful information! Thank you!!

Thought I would let you know I had a Digital Motion X ray today and I was without a doubt 100% diagnosed with cervical instability. I have a massive c2 overhang. You didn't mention how CCI can sometimes cause pots and tachycardia. I just found that out today.

@bhupendrasingharora6183

2 жыл бұрын

What are your symptoms

Thank you so much for sharing!

@HealingWithRachael

2 жыл бұрын

You are very welcome!

Thank you very informative

I have 138° CXA supine and around 8mm Grab oakes. God bless you🙏

@HealingWithRachael

2 жыл бұрын

All the best!!

@amgnico

2 жыл бұрын

@@HealingWithRachael Thanks 😊 Maybe I'll try prolotherapy 😳

@HealingWithRachael

2 жыл бұрын

@@amgnico let me know how it goes if you do!

Thank you so much

Very good video mem

Good Video!

Ty for sharing! I would add Dr.Hendersons partner to your list amazing neurosurgeon and very well educated with instability and chiari malformations!

@HealingWithRachael

5 жыл бұрын

I definitely will add him :)

@TheBrokenWing8

5 жыл бұрын

Rachael Elizabeth is there anyway you can tell me which tmj specialist you saw, I am desperate to find a good tmj doctor. My ear pressure is is bad I want to scream, and the docs are thinking it could be tmj! I am so off balance and just in misery!

Do you have an opinion on Chris Centeno? He says dmx is the best way to diagnose CCI, and he says the only way to get to the internal ligaments is through guided imaging through the mouth.

I’m ping-ponging between doctors in my state asking for these tests and doctors refuse to order them.

@HealingWithRachael

4 жыл бұрын

I am sorry to hear that, I hope you can find the help you need.

@Blake-pz7jj

4 жыл бұрын

Got the same problem these neurosurgeons especially the newly sworn in are grossly incompetent.

@Blake-pz7jj

4 жыл бұрын

Even worse ER doctors also refuse these tests.

@marcahorn9336

3 жыл бұрын

Check out caring medical in florida they are also in another state. He specializes in instability

@lashawnab.441

3 жыл бұрын

So many drs don't know about this stuff and say it's not that because that can't happen. Dont Google stuff. Lol but if they'd do something we wouldn't have to search out answers . I pray you find the help you need. I've been going thru this so long. I'm bed bound and end up in the er every fall for some reason that's when it gets worse.

I would just be careful with the doctor who says they know what is wrong. They aren't always right just because the other doctors dismiss the problem or don't know. That is the real trick. That CCI/AAi surgery seems like a very big change to the body. I think you might have had the surgery already. The other thing I've learned about CCI/AAI is that maybe this tethered cord thing is the real problem or should always be treated first to see if the neck problem goes away. I'm on a similar journey, but I don't have EDS. I have spina fibida spina bifida occulta though and that is the other condition that can be associated with tethered cord, which is then associatd with CCI/AAI. I have symptoms of tethered cord that I've looked read about too. I see you mention CSF leaks; spinal type. That is the one I was thinking of before CCI and tethered cord. My dysautonomia doctor said he didn't think it was CSF leak, but wants me to get rotational CT. He actually ordered flexion and extension on the CT too, but I'd rather do the upright MRI for that. For some reason I guess MRI doesn't work well for rotation? I don't know why exactly.

Hi Rachael. Thank you for the videos. I need to get a neck brace, too (I have EDS and CCI). Can you share a link for the brace you have? I've looked at many but am having a hard time choosing and yours seems good. Thank you.

Wonderful intelligent videos young lady... I have had this problem for 7 years now and fighting like mad to get something done. I am not finding many surgeons or neurosurgeons that care to think I have a problem but has been clearly seen on Digital Motion Xray for sure. I wanted to ask what brand is you collar and were you fitted for it? Thank you so much for your videos

Hi, thank you SO much for sharing your experience! 😊I have a few questions: 1) I also live in Utah, where did you get your Upright MRI. I heard Utah doesn’t have one. Who is the doctor in Utah that you started out with that began this journey? (If you can answer that?) 3) As part of your diagnosis test did you wear a rigid collar and crank it up every few days until you felt better? I’ve had that suggested to me? Thank you! You are so courageous!

Do you know if ANY of those doctors take insurance or are all of them out of pocket?

Thank you for the video, is your neck not stiff to move, I was diagnosed with c1c2, I'm stressed, I'm afraid to have surgery

There's also a specialist in Cincinatti, OH named Dr. Justin Virojanapa (I'm seeing him in a few weeks per recommendation from another friend with EDS)

@lashawnab.441

3 жыл бұрын

Thank you for sharing this. I live in Ohio not Cincinnati I'm in Columbus but it's worth to go there if I can get help i just have to pray my insurance is approved asap

@jendomski

3 жыл бұрын

I’m in Columbus too! It’s definitely worth the drive to Cinci to see Dr V!

@jendomski

3 жыл бұрын

@Bradley Wolfenbarger Hi there! I did end up seeing Dr. V and getting diagnosed with CCI, but I'm right on the edge of diagnostic criteria, so not a candidate for surgery. he recommended I wear a soft cervical collar when my symptoms get worse. I saw him in person for the first appointment, and he gave me MRI orders to get done locally, then for the follow-up he did telehealth to save me the drive to Cinci to review my scans.

Thanks for your informative and didactic video. My wife is suffering from connective tissue disorders not clearly diagnosed. We are planning a trip to Spain next month where you mention a Dr. Gilete as a knowledgeable specialist in this area, but I can't find him. I found a neurosurgeon named Vincens Gilete at Hospital Quirón Barcelona, but unfortunately he doesn't seem to work there any longer. Do you have any way to locate him, or may be you (or somebody in your network) know some other specialist in Spain competent in these disorders in Spain?

Hello Dear Rachael, What is CCI and How to check it？ Does it have any symptoms? thank you❤️❤️

@Healingwithrachel Why low histamine meats? Why is histamine important? I am experiencing some issues, and i see when i drink anti histamine medication it has some impact, but i just connect it to polen. From your experience, how is this connected to CCI

Rachael - you know more than most of the specialists I've seen. I know I need to have surgery. May I ask what brand of neck brace you have and where you got it?

Hi Rachael, hope all is well. Just wondering, when your neck is fully healed and you feel comfortable enough, could you do a neck range of motion video? As I think the main concern for most people getting a CCJ fusion is the loss of range of motion. Thanks

@HealingWithRachael

5 жыл бұрын

Yes I could do that, but actually my surgeon doesn’t want working my range of motion at all (ever) 😕 With my particular surgery I could work back some ROM, but because of my instability below my fusion he doesn’t want me to do that.

@JackSmith-cl9eo

5 жыл бұрын

@@HealingWithRachael Fair enough, I can understand that, especially if you have Subaxial Instability. I mean c2-c3 obviously isn't meant to rotate much. But then I must ask, have you find the loss of ROM quite debilitating/concerning at all?

@HealingWithRachael

5 жыл бұрын

I am pretty used to it as I’ve been in a neck brace since January. But it’s definitely not ideal-I would love to be able to move my neck. When I watch movies I literally pay attention to people’s range of motion 😂 It makes driving really annoying, and definitely can interfere with certain activities. But because I’m still pretty sick I haven’t noticed it as much as a healthy person would if that makes sense. People move their neck ALL the time 😂 Guess you don’t notice it until you can’t. But if it gives someone their life back I’d say that’s a small price to pay.

@JackSmith-cl9eo

5 жыл бұрын

@@HealingWithRachael Hi Rachael, thanks for the response. I too end up checking out other people's necks and feeling envious :). I can imagine it makes some tasks more difficult indeed. Have you notice you are slowly having more ROM or has it stayed the same? Also, have you seen any improvements in your symptoms yet? Wishing you all the best on your recovery - its a tough surgery and you seem to be incredibly resilient.

Thank you for this very useful info. I have new laptop with volume on max and your video on max and it's still hard to hear. Just an fyi,,

@HealingWithRachael

3 жыл бұрын

Thanks for sharing! All the videos after this one are used with a different camera and should have better audio ❤️

Hello Rachael Thank you for this informative video. I was wondering if your CCI/AAI was from an injury and what exactly was wrong with your cervical spine? What symptoms did you have? Also, have you ever tried a specialist in the Gonstead Chiropractor field? Atlas Orthogonal specialist? Thank you so much.

@zeaw119

3 жыл бұрын

Ehlers Danlos Syndrome (she mentions it at the beginning of the video) is a genetic connective tissue disorder that causes laxity and problems with connective tissues and any tissues that contain collagen and other building blocks. CCI/AAI and Chiari can be caused by many things but they are both common co-morbid conditions with EDS. EDS is often considered the core cause in these situations because the surrounding structures (spinal chord, spinal ligaments, muscles, etc) are too loose and elastic. Which can leas to the instability seen in CCI/AAI and the “sinking” of the brain stem as seen in Chiari. These conditions can be caused by an injury, especially in EDS cases but often it’s just something that occurs as an EDS complication without previous injury. CCI/AAI specifically is instability in the vertebrae of the upper cervical spine. So if you can imagine the vertebrae holding your head to your neck partially dislocating with any movement, that is essentially what is happening. Symptoms can vary and there is a long list but it’s usually neurological in nature - pain, balance and coordination problems, brain fog, fatigue, seizures or pseudo-seizures, headaches, muscle pain and stiffness, etc I personally don’t know about the two you listed specifically but EDS patients are typically not able to see most chiropractors and receive chiropractic care because it can lead to further, significant damage. Especially in the cervical spine. Most specialists that EDSers see have to be EDS Aware or Specialized practitioners. Hope this helps!

@GLGC688

3 жыл бұрын

Chiropractic is dangerous and possibly deadly for those of us with EDS. Absolutely, Absolutely not worth the risk of a cervical dissection.

@jenniferhahn2851

2 жыл бұрын

@@GLGC688 After going to the chiro, them having it in my chart to not manipulate my neck, he did and now I am having horrible symptoms. All it took was one time and now spending countless hours at the Dr, feeling almost unable to function, your warning is very important

If you had the cranial fusion down to C2 then why did you bother with prolotherapy in Florida ?

I just found your channel. So informative! Can you suggest a doctor in the Maryland area? And place for upright MRI?

@HealingWithRachael

4 жыл бұрын

Hi Maryellen! I'm glad it has been helpful in some way. There are a few doctors in Maryland--Dr. Fraser Henderson and Dr. Sandhu at Georgetown. There are several locations for upright MRIs in Maryland too. If you search Upright MRI in Maryland you'll find them. Good luck!

@maryellen6230

4 жыл бұрын

Thanks so much! I will check it out.

What type of Chiari decompression did you have? I was wondering if you could please describe the procedure, because there are different variations of the surgery and I think they have different outcomes. Did you have a tonsillectomy? Thank you very much for sharing!

@HealingWithRachael

5 жыл бұрын

I did not have a tonsillectomy. I had a wide simple bone decompression with a craniocervical fusion!

@robot1121

5 жыл бұрын

@@HealingWithRachael Thank you! 😊 How are you feeling? I hope things are getting better for you. Was the decompression with or without a duraplasty? If with a patch, which type?

How did you know if you symptoms are related to POTS or CCI?

Could you give tips on how you wear your brace? It gives so much pressure on my jaw and face that my jaw luxates

@stargazer8081

3 жыл бұрын

Which brace do you recommend?

Hi what symptoms did you originally start with ? Thanks

Hey I’m going for my first diagnosis tomorrow in the uk ,I have all the symptoms you mention . Can you please give an update about how you feel now after all this procedure ??

@HealingWithRachael

3 жыл бұрын

Hi Michael, best of luck with everything! I do have a video where I discuss that called “Craniocervical Fusion Post-Op q+a” Unfortunately I’m not doing much better than before. But that’s not the case for everyone! Wishing you the best!

@jodiemaplesden3270

3 жыл бұрын

Michael okay I'm from the uk did you get your diagnosis x

Thank! I see that your teeth are slightly off to the side and the upper lip is lower on one side than on the other. I also got it. Is this also a sign of cci?

Do you have a video of your MRI’s?

I have atlanto axial instabilty and i read that prolotherapy may be helpful . What is your opinion

@HealingWithRachael

4 жыл бұрын

I believe that Regenexx in Colorado is the only place that does prolotherapy/stem cell/PRP for c0-2. I have had 2 rounds of prolotherapy below my fusion and one round of PRP. The PRP has definitely been helpful for me (more so than prolotherapy). Avoiding fusion is always best but everyone is different and there aren’t guarantees with those types of treatments! I hope you can find help and relief soon.

@basemhalfawy82

4 жыл бұрын

Some doctors recommended fixation surgery for me ,others didn't Was fusion helpful for you ?

Where did you get your neck brace

Dr Paola in NY reviewed my images and sent them back, saying he couldn’t help me. Never heard back from his office, do you think that means I don’t have it? I have a cranial leak and IIH. I have many symptoms of CCI. Still looking to get the conditions I do have fixed.

@HealingWithRachael

4 жыл бұрын

Hi Hope! I'm sorry to hear he said he couldn't help. He is considered one of the top specialists, but I'm sure he can make mistakes or miss things sometimes. IIH and csf leak have so many overlapping symptoms to CCI, so it can be tough to distinguish what is what. If you can get relief from treating those conditions, that would likely be better than having to go through a craniocervical fusion. I'd say if there's anything you can do to avoid a fusion, do it. But you could always seek another opinion! Wishing you the best with your journey ❤️️

Does the MRI need contrast?

Whered u get ur neck bracd from plz

hi i live in texas and have EDS , but i haven’t found a doctor to treat me for this. I also have many symptoms of what you are experiencing , i just need help.

@HealingWithRachael

4 жыл бұрын

I’m so sorry to hear that Suzy! I hope you can find the help you need.

can it cause aching in breast bone area

Hi, i have weird neurological symptoms and i am pretty sure it's CCI, but it is because of phone use, not ehler danlose, i just want to know, will i get better with just correcting posture?

@starsINSPACE

5 ай бұрын

If your posture is causing neck strain then you are also injuring different muscles and ligaments so your body can't just hold up your neck correctly the same as before. You will need physical therapy to restore your muscles and ligaments to normal. Look for physical therapists or rehabilitation medicine professionals that treat "forward head posture" but avoid chiropractors! Hope you're doing better (I know this is an old comment)

Does anyone know of any doctors who work with cci in California?

@amandabarrie910

5 жыл бұрын

I have not found anyone in California, unfortunately.

@amandabarrie910

5 жыл бұрын

I should amend my comment: If you are in need of a CSF specialist, Dr. Scheivink with Cedar's Sinai in Los Angeles has successful reviews for the most part. I met with him in hopes he might have enough knowledge regarding CCI but this was definitely not the case. He seemed nice for the 3 and a half minutes he came into the room to say he saw nothing. I have no reason to doubt he is excellent with his very specific specialty - alas, that in and of itself is a major part of the problem in the medical community today... the pin-sized focus and disinterest in breadth of correlated issues. So, I will point out that his office would not order the upright extension and flexion MRI. His assistant didn't even know what this was and just kept telling me over the phone it's not necessary. So, I had my Primary Care Physician (who knows nothing about EDS and has not taken interest to educate herself on it) order one for me, and I sent the report and disc of images to Dr. Scheivink's office ahead of my scheduled appointment with him. This was done 3 months ago and it was not until yesterday when I stumbled upon Rachael's video that I became alerted to the fact the MRI was ordered incorrectly; none of the angles were mentioned on the report; no lateral rotation images were ordered; literally none of the defining criteria was examined. I have since done further research on the topic thanks to Rachael, and I suppose now I have to go back to the drawing board. I also had to pay out of pocket for that upright MRI. It's most unsettling, discouraging, and frankly, infuriating. I'm originally from NYC - so, I may wind up flying East to see Dr. Paolo Bolognese. I'll do some reading on the various specialists on the above list. If you happen to have any luck with Neurosurgeons anywhere in California, I would be so grateful to learn. I wish you a successful search! I'm so sorry I couldn't provide a direction for you.

Where can I get a cat scan upright? I can not lay back as I get vertigo. Thank you

@craniocervical_canada

3 жыл бұрын

Upright MRI Dr. Rosa in NY. Costly but has the CSF flow study and treatments via AO.

Is Surgery the only option….?

@florpodesta561

2 жыл бұрын

you can try, Centeno & Schultz, inventors of the PICL stem cells injections in the CC junction, to tighten the ligaments. They are the inventors if the Regenexx system. If your case its not so severe, this would be a first choice to try , before a surgical fusion.

I clunk like crazy at my OC to C2 Imaging appears “normal” My DMX is questionable but no one is trained to see anything. I did see a specialist and he did only Grabb Oakes - and i was shy of 9mm. Thats it, no neurological test. He opted me if i was surgery i can. 🧐

@RobertLongM

4 жыл бұрын

@Lawrence Taylor Hi It's tough Especially the depression it brings. It's hard to know what is the root cause ... I've seen 10 other's MRI and CT and some look worse than I do and they are fair , not great. So I do know that mentality does matter in the severity. Like this girl is amazingly strong. I'd like to know more about your GF rlong98 at Google

@paulkrgaful

4 жыл бұрын

@Robert Long Sorry, I see you've had a DMX. Can you send the results to someone like Dr. Henderson in Silver Springs, Maryland? He seems to be the go-to guy for this kind of thing. As for the depression, an approach is 1. SSRIs 2. Exercise every day. 3. Make sure you never lie down; always make sure you're doing something constructive. Working, helping, exercising, learning a new skill learn a new language, anything!

@RobertLongM

4 жыл бұрын

LT56 cant exercise Henderson seems to only take EDS people, and my measurements aren’t enough to merit surgery. I do lay down a lot, and now realize how bad it is for me, but hard to be upright too at times. SSRIs backfire on me Cant do much constructive things cuz i cant stand or look down too long

@RobertLongM

4 жыл бұрын

LT56 yes i got DMX

@paulkrgaful

4 жыл бұрын

@@RobertLongM Aw man, sorry to hear that. How about Dr. Centeno in Colorado with his stem cell trial? Do you have the cash?

Can you have cci without eds?

@HealingWithRachael

5 жыл бұрын

Yes you can! It can be caused by an injury or other conditions. Recently there has been a link to chronic fatigue syndrome/ME.

@MrApplewine

5 жыл бұрын

@@HealingWithRachael I have chronic fatigue syndrome and ME. Much pain allover, but pain is worse right side of face and neck.

@Goat.Cheese

5 жыл бұрын

Yes, some people who don't have connective tissue disorders develop cci after things like Lyme disease or a severe viral infection

@amandahudson6348

5 жыл бұрын

Would a 3D CT Scan show if you have CCI

@MrApplewine

5 жыл бұрын

@@Goat.Cheese I was having allergy shots immunotherapy and became extremely ill with upper respiratory infection worst of my life for months around the time my neck pain started. The rest seemed to progress in the years after that. So, the allergy serum injections might have weakened my immune system and was a bad idea. I didn't finish and won't do it again.

Using technical medical terminogy relating to surgery is not helpful at all for the non medically trained public, / i had damage to hearing nerve in Right ear with hearing loss

@edwarddesenne6153

3 жыл бұрын

My condition was diagnosed as “Compensatory Labyrinthitis “ but ENT surgeons gave me no effective relief for mobility walking issues and no research. I had chiropractic manipulation and do regular Pilates stretching exercises to lessen tense neck muscles plus postural correction using light weights.

sp do any Dr's even know of this in the UK? Why are Dr's so *** uselss?

@OurAshX

Жыл бұрын

Dr Gillette in Spain should be your point of contact

@markcrisp07

Жыл бұрын

@@OurAshX ok..thank you

Shectalks to much

@HealingWithRachael

Жыл бұрын

😅😅😅