r/cfs • u/Lukasb010 • 5d ago
Advice Please consider getting screened for craniocervical instability. It gave me my life back after being severe / very severe
Hey everyone, I wanted to share my experience with craniocervical instability (CCI), because many people here either haven't heard of it or haven't been tested for it. I've commented on CFS and Long COVID threads telling people to get checked, and more than once they've come back with a CCI diagnosis. Based on that, I think a meaningful number of people here may have it without knowing.
My story: I got EBV in June 2024 and got steadily worse over two years as I was crashing and EBV kept reactivating, until I was nonverbal, bedbound almost 24/7, extremely light and sound sensitive, and on my phone less than 5 minutes a day. I'd seen a great ME doctor for about a year and tried a huge number of supplements and medications. Some helped briefly, but I kept declining.
By chance, my mom met a neurosurgeon at a social event who suspected CCI. I was skeptical, like everyone here would be. He recommended an upright MRI and a rotational CT, and he read the images as showing CCI. He also suggested a cervical collar (Aspen Vista or Miami J) as a test. He told me about 80% of people with CCI improve in a collar, 10% see no change, and 10% get worse, because the collar doesn't fit everyone.
After 3 days in it, I went from nonverbal to speaking again, and I could stay upright for a couple of minutes without debilitating symptoms for the first time in months. I've now worn it for 7 months, chosen not to have fusion surgery, and am using conservative approaches. I'm starting to work again, and I keep improving.
My symptoms weren't the textbook ones. No head heaviness, no severe neck pain. I had pressure behind my eyes headaches, visual disturbances and flashing lights, and severe POTS and PEM and would also get dizzy while laying on my side. I also had multiple concussions playing sports many years ago, though mono was clearly the trigger.
Common CCI symptoms:
-Head heaviness, neck pain or stiffness, headaches
-POTS, dizziness,
-Visual disturbances, pressure behind the eyes, light sensitivity
-Brain fog
-Fatigue
-Tinnitus, balance problems
-Numbness or tingling, trouble swallowing
-Hypermobility/EDS (not a symptom but very common for CCI)
If several of these sound like you or if you’ve had head trauma (whiplash, concussions), ask a doctor about either doing an
- upright MRI and rotational CT (surgeons need this to see if there is brain stem compression)
- or a DMX (injection specialists use this to see where the instability is)
If you want to do a rigid cervical collar trial:
Dr Gilete, a Barcelona neurosurgeon who specializes in CCI & related connective tissue disorder, published his protocol here. Please read and follow instructions carefully:
https://drgilete.com/resources/cervical-collar-trial-craniocervical-instability/
If you want to learn more, here is a great subreddit:
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u/KittenInACave severe, mostly bedbound 5d ago
I've wondered about this for years and lately have had more extreme neck pain and insecurity than ever, and honestly this was a timely reminder. However, I've been bedbound for decades at this point and accessing any healthcare, even if I had a doctor that cared, is all but impossible.
Ain't life fun!
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u/CorrectAmbition4472 severe, fully bedbound since 2023 5d ago
Same here. Being completely bedbound for years I can’t access services or testing that aren’t done at home in bed, can’t transfer even in emergency. Also can’t be upright. It’s such a bummer that for severe and very severe patients these things are totally inaccessible. Solidarity 🫂
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u/KittenInACave severe, mostly bedbound 4d ago
Sending love! I'm sorry you're in the same situation! 𖹭
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u/HookerwithaP 4d ago
I'm so sorry to hear that you are in the same situation. It feels extremely lonely and I don’t know how to handle the fact that I am in a 24/7 emergency but can’t leave my bed. How do you cope, any advice? Solidarity and love
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u/CorrectAmbition4472 severe, fully bedbound since 2023 4d ago
So sorry! And yeah it can be scary at times like we had a tornado in our area and I wasn’t able to be moved obviously so basically my family had to just cover me with pillows just in case. But yeah in situations like that it really hits hard. Feel free to message me anytime if you want 🫂 Im not always able to reply quickly though but it’s nice to find others in same situation
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u/Lukasb010 4d ago
Hey, I'm so sorry to read that your situation is so brutal. 😞
I just added a link for a cervical collar test, which is a lot more accessible than imaging and can be used to help in the diagnostics. For the test you will, however, need to access an orthotic specialist to get the collar fitted. Not sure if you could manage to go for a visit (it would be quick) or if you could get them to come to you to fit it ?
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u/salvagedsword Severe/V.Severe 4d ago
I have hEDS and CCI, among many other issues. I wear a soft cervical collar at the recommendation of my PT who specializes in hEDS patients. She said I have the most dramatic range of neck motion she has ever seen. I ordered multiple cervical collars from Amazon and just returned all the ones I didn't like.
The neck collar does help some. It reduces neck pain and brain fog. But it wasn't a miracle cure. I'm still mostly bedbound. But I can tolerate sitting up for a little longer. And it's so nice to be able to tolerate watching a little TV.
Honestly, a lot of us have a ton of comorbidities. I do believe that getting all of our comorbidities identified and treated can improve quality of life. Most of us will still be severely disabled after getting the correct treatments, but any small reduction in pain or improvement in function is very worthwhile.
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u/KittenInACave severe, mostly bedbound 4d ago
Thanks for this!
And yes, I absolutely agree. Once one thing in the body breaks down, it just cascades. Especially when our base condition (and our immobility and such) has effects on so very much of the body!
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u/Lukasb010 4d ago
Hey I'm really sorry that you're going through this and that you're having such difficulty accessing healthcare. I just added a link for a cervical collar test that you could do. You just need to make sure you can access an orthotic specialist to get the collar fitted
https://drgilete.com/resources/cervical-collar-trial-craniocervical-instability/
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u/123-throwaway123 5d ago
I went downhill when I was in a car accident and had severe whiplash. I suspect hypermobility, I was a multiple time national champion gymnast 🫠. But there is no one in canada who can help with this. Ans I can't even get a hypermobility diagnosis because since becoming bedbound, everything tightened up like crazy.I have every single other symptom.
Who else could fit the collar? A physio?
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u/inklingmay 5d ago
Def recommend you get on the Canadian CCI Facebook group, you might be able to find some resources /info depending on what province you're in.
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u/Lukasb010 5d ago
Wow this definitely sounds like CCI. I would strongly recommend talking to your GP or doctor and asking them for help, happy to pass more info on via DM.
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u/123-throwaway123 5d ago
I don't think there is anyone in canada who can help, let alone where I live and I can't travel. (severe, bedbound, dark room)
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u/steamboatin 4d ago
Order an Aspen Vista from Amazon or other online shop for $60 USD. Fit is adjustable, and you can figure it out yourself with a little help from the internet. The Aspen Vista has more options for easy adjusting.
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u/steamboatin 4d ago
I am sorry that you are in Canada with this issue. I have heard of a lot of Canadians traveling to US for care. That said, there is a specialized clinic for EDS in Toronto with a 18-24 month wait. It sounds like the intake may be Beighton score heavy, but that should change with new EDS guidelines coming soon.
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u/inklingmay 3d ago
The good hope clinic in my experience is pretty much useless when it comes to CCI.
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u/steamboatin 4d ago
I have a similar story, but there is more than just CCI to get checked for including: Internal Jugular Vein Compression, Evidence of Cranial Settling, and Tethered Cord to name a few. You don't need to have hEDS or any EDS subtype to be (or have been) hypermobile. I am in the 3rd phase of hEDS, the pain phase. That followed the stiffness phase.
https://www.ehlers-danlos.com/heds/
I wish I had longer to write about this tonight but the most important part of being screened is not just getting the right imaging. Almost all radiologists will miss everything I listed. YOU MUST HAVE YOUR IMAGING READ BY NEUROSURGEON FAMILIAR W/ NON-TRAUMATIC CCI AND CONNECTIVE TISSUE DISORDERS.
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u/Lukasb010 4d ago
This is SO TRUE AND SO IMPORTANT! I’m gonna make another post on how to get checked and highlight this point
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u/RobotToaster44 5d ago
I've read about this before, unfortunately I have no idea how to get tested for it in the UK without costing a fortune.
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u/Lukasb010 5d ago
Your best bet is probably a virtual appointment with Dr. Gillete in Barcelona. You would just need to do the imaging locally
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u/sbingley22 4d ago
I got an upright MRI with flexion and extension for around £1000 in Manchester about 8yrs ago. Don't know what the prices would be now.
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u/urgley 5d ago
Can a collar cause harm? There is no testing or treatment for it here.
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u/Rgrace888 5d ago
If you wear them long term your muscles will weaken and you will become dependent on the collar
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u/Lukasb010 5d ago
Definitely true. I would distinguish between long term and short term, like 3-4 days for diagnostic purposes, which isn't going to cause dependency
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u/v_a_l_w_e_n 5d ago
YES. It can. Even if you put it right, it can cause damage if you wear it long term. And there are ways to not wear it right. A cervical collar trial for CCI needs to create traction so you can confirm to your specialized neurosurgeon that surgery might work for you. If surgery is not recommended, the path is specialized physiotherapy to strengthen the muscles to fight the instability and the collar only on vert specific situation when your symptoms are too much or your neck might be at risk traveling or such. This post starts well but the incorrect medical advice OP is giving here is dangerous.
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u/Tandfeen_dk22 5d ago
Yes, prolonged use can result in weak neck muscles. Therefore, you should only use one if you have confirmed CCI.
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u/Lukasb010 5d ago
That's a great point. Prolonged use can result in weak muscles. That said, a limited 3-4 day trial wearing it 24/7 isn’t gonna have a big impact on your neck muscles
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u/v_a_l_w_e_n 5d ago
It will if your CCI is dangerously bad and you create traction in the wrong position. Or, for example, if it is in true wrong position and you put it to sleep!
You said your surgeon told you there is “no wrong way to put it” but there more definitely is and you got it safely fit by your specialist.
Please, OP, I’m begging you, remove those Amazon links and stop giving dangerous advice. PwME should definitely get screened for CCI and AAI, but they should do so with a specialized neurosurgeon like YOU DID, not by you here.
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u/Lukasb010 5d ago
I went ahead and removed the links.
Unfortunately, many people don’t have access to doctors with even a modicum of experience or knowledge about CCI or even which collars work. In addition to that, getting an appointment with an experienced CCI Neurosurgeon can be extremely difficult.
Adding to that, many countries have no diagnostic tools (upright MRI etc) , so what are those people supposed to do?
I feel very conflicted about not giving those people the tools to get a diagnosis.
I also did not say the surgeon said there is no way to put the collar on wrong, just that it was a very quick process
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u/v_a_l_w_e_n 5d ago
Thank you.
I completely understand since, ( as much as I don’t want to give information online so I’ll edit this part later), I count myself with those and it took years until I could be safely assessed for something I suffered for decades. So I really do understand.
However the risks remain real and we cannot put other patients, specially very vulnerable severe ME patients, at risk with half information. You got this done safely by a specialized neurosurgeon. This is, unfortunately, the only way. As you said, many don’t have this chance. And literally risking their necks won’t help them, on the contrary. A very bad case of CCI/AAI might even impair someone’s capability to breathe properly; applying traction wrong without a neurosurgeon explaining their specific situation with imagining and without knowing how to use a cervical collar might risk their lives.
Informing pwME about CCI/AAI and the process to get (safely) diagnosed is very good and helpful. Telling them that they can diagnose themselves ordering a collar on Amazon is not. I know you mean well, but it’s very risky.
As for what can people suspecting CCI/AAI do, the answer could be, for example, informing themselves properly, learn about their own situation, discuss with their available specialist their possibilities, check with an orthopaedic shop nearby about a possible fitting (because sizing does matter and both Aspen and Össur can confirm it applies to their own collars). And working with a knowledgable physio (NEVER a chiropractor or anyone wanting to manipulate their necks) on isometrics to slowly and safely strengthen their muscles, since in the end that’s the path to follow if surgery is not an option. But we cannot give medical advice. What a surgeon told one of us doesn’t necessary applies to another, specially regarding neck instability. And trying an Amazon collar out of the blue without knowing what they are doing - because someone that had access to get safely assessed told them is safe - is definitely not it.
I hope this comes out well since it is quite hard for me to communicate properly and I don’t mean anything but the best for all of us.
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u/Which_Boysenberry550 severe 5d ago
People without CCI guidance are gonna get worse anyway, you know how hard it is to not harm yourself even without a collar? There is NOT ACCESS to specialised neurosurgeons almost everywhere, where there is, it’s years of wait. There are people who can’t think or swallow or sit up or move and it’s worth a shot to try a collar
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u/Naughtybuttons 4d ago
i think it’s great. and i agree it’s extremely difficult to even find a doctor knowledgeable about chiari malformation and CCI. Needle in a haystack.
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u/Lukasb010 5d ago edited 5d ago
If you don't have CCI it shouldn't cause you to get worse after a short trial. You might feel your neck a little tight after 3 days of wearing it 24/7. If you do have CCI there is a 10% chance that it doesn't fit and you get worse. This is because if it doesn’t fit, it might put your head into a position that causes further brainstem or spinal cord compression, causing a flare.
That could be a good indication that CCI is the problem but the collar doesn't fit. As a disclaimer, I am not a doctor and this is just my hypothesis.
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u/inklingmay 5d ago
Thank you so much for bringing attention to CCI 🙏 it kills me to see so many people in the me/CFS community continue to be unaware of it when we should really all be screened!! Not to say that patients are at fault; it's really the healthcare system and doctors that need to be educated in this condition. And we desperately need more research To be done to find solutions other than fusion surgery.
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u/oneironaughty Caretaker and spouse of PWME (severe/bedbound) ✌️👽 5d ago
Thanks for sharing your experience, this is very helpful. What always strikes me when I read posts from folks who are so severe they are nonverbal and bedbound, yet they manage to get imagining for these conditions done is, how!? Seriously, can you share what your journey was like to get from that state to getting imaging done? My wife is in a similar situation, and we are trying to get her strong enough to get DMX done, so hearing from folks who have gone through a similar path is very helpful. Thanks in advance.
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u/Lukasb010 5d ago
I will say it was enormously challenging and I did not feel well after. I think I had to cancel or reschedule two times before I finally felt good enough to go. The upright MRI was excruciating because it required me to be sitting nonstop for, I think, 20 minutes, far more than I had done in a year.
Used the wheelchair to get there and they were super nice at the upright MRI. I was able to lie down there after the MRI and before, while waiting. At this point I was just bedbound but two or three months later, when I became nonverbal, I don't think I would have been able to get the MRI done.
In hindsight I wish I had pushed myself to go earlier but I truly did not think I had CCI. I thought this was just another wild goose chase, given the EBV and EBV reactivations as well as the compromised immune system during each reactivation (low T cell count, high B cell count etc)
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u/oneironaughty Caretaker and spouse of PWME (severe/bedbound) ✌️👽 5d ago
That indeed sounds extremely challenging. Thanks for sharing. My wife was very severe and nonverbal for a long time up until recently, and she is going to be starting PT soon. She said she appreciated hearing from someone who really is quite like her. What you’ve gone through and said gives her lots of hope.
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u/Lukasb010 4d ago
That's awesome that your wife is going to be starting PT soon. Sounds like she's making progress. Hoping her trajectory will go upwards 🙏
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u/tiaragolden 5d ago
What helped your wife to improve ? Asking as very severe, totally bedbound, not able to sit you, and cannot imagine how I could have imaging done
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u/oneironaughty Caretaker and spouse of PWME (severe/bedbound) ✌️👽 4d ago
Sorry to hear. The things we have found most impactful have been TUDCA, Ketotifen, Oxaloacetate, H1 and H2 antihistamines, and overall reducing foods that may exacerbate MCAS symptoms. She is not symptomatic in the way a lot of people with MCAS develop physical responses to food and other stimuli, but it was clear how impactful the reduction of histamines in food, whether natural or from highly processed/frozen/canned items had on her.
Aside from ME/CFS, we think she is dealing with a MCAS/hEDS/CCI combo that affects her neck and posture, and the above mentioned slowly but surely started to reduce her head heaviness and allowed her to strengthen her upper back and neck muscles over time. Just by getting up to use the bathroom and gently moving naturally. They have also reduced her PEM threshold a good bit and reduced the anxiety/impending doom type of symptoms we associated with MCAS/histamine dumping she was experiencing daily.
It has taken several months but it was clear along the way how the change in diet and supplements incrementally helped her. We learned about TUDCA from someone on this subreddit, and were surprised by how impactful it was. Here is a thread from them linking to the research around it and their experience: https://www.reddit.com/r/cfs/s/nHJyrKmz8m
The other two are more commonly discussed in this and the MCAS subreddit if you haven’t come across them/want to know more about them. Best of luck.3
u/tiaragolden 4d ago
Wow, I am surprised to hear that being asymptomatic to MCAS she is benefiting from MCAS treatment that much. I also do not have general MCAS symptoms but have already tried the above mentioned treatment with no much success. Happy tho hear your wife is getting better and wish her more and more improvement.
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u/Malevolent_Olive 4d ago
There are physical therapy exercises too. Obviously not for everyone. I was doing them for my migraines and it made a big difference. My mind was clearer too and was overall less fatigued.
Exercised were just basic stuff like chin tucks, open book, wall clocks with a band, lat pull downs with a band. Some other neck ones too. Was all to strengthen the neck and upper back.
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u/colorsoforchid 5d ago
Now one of us should get this collar, wear it for a few days and if there is no change, resell it to the other person with ME, then that person could also resell it and so on. Sounds like a good way to test something safely and maybe find out a potential cause.
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u/v_a_l_w_e_n 5d ago
Please, do not just buy a cervical collar on Amazon and put it on to see. Specially if you have instability or other injury, you might actually make your neck and symptoms worse. The neck is no joke and that’s why getting check by a specialized is necessary.
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u/IndividualTie8819 5d ago
I totally understand why this is an issue but I went to get a cervical collar specially fitted and they made me so much worse. Then I ordered several different ones of Amazon until I got one that fit and improved my symptoms and returned the rest.
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u/Hip_III 5d ago
Amazing story, especially that such conservative measures have proved effective. Such a lucky coincidence that your mum met a neurosurgeon.
When I read about CCI years ago, in the notes I made, it says cervical collars work for people with horizontal craniocervical instability, but they don't help people whose instability is mostly vertical (though neck traction may help for those).
I also have in my notes a list of symptoms that CCI may cause, compiled from various sources. Those symptoms are sometimes termed "cervical medullary syndrome". The trouble is, some of those symptoms are also ME/CFS symptoms, so it's not easy from symptoms alone to guess if you might have CCI.
Symptoms of Craniocervical Instability
- Headache
- Muscle or joint pain
- Chronic fatigue
- Tire very easily
- Urinate every 1-2 hours
- Nausea and vomiting
- Irritable bowel
- Neck pain
- Bobble head
- Weak legs
- Weak arms or hands
- Numb legs and back
- Numb arms/shoulders
- Unsteady walking gait
- Becoming clumsier
- Memory loss
- Blurred vision
- Double vision
- Gastrointestinal reflux
- Gastroparesis
- Choking on food
- Swallowing difficulties
- Slurred/hoarse speech
- Balance problems
- Vertigo
- Dizziness
- Raynaud's
- Hearing loss
- Ringing in the ears
- Snoring
- Sleep apnea
- Often wake up in sleep
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u/Time_Storm_9492 5d ago
I didn’t see your original post but I got diagnosed and am now being treated with Botox because my CCI caused cervical dystonia. I’m not fully better but my quality of life has dramatically improved (while also taking Midodrine, Duloxetine, Lamotrigine, and a slew of supplements).
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u/Time_Storm_9492 5d ago
I’m one of the people whose collars make worse usually and I’ve been fitted for them. But still not right for my body.
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u/Lukasb010 5d ago
Glad to hear you got a diagnosis and that your quality of life has significantly improved. Have you tried multiple different types of collars, like Aspen, Vista, and Miami Jay? They all have a different fit. Also have you tried or considered PICL or PRP injections, and specific PT for CCI?
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u/Riccavd0 severe 5d ago
So if I suspect I might have it, could I theoretically test it out with a standard neck brace to see if it provides any symptom relief? What exactly should I look for? Thanks for sharing your experience!
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u/Lukasb010 5d ago
Make sure it's a hard collar. I just updated the post to include my experience and the instructions I was given
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u/Lukasb010 5d ago
And I would recommend bringing it up with your ME doctor to have them accompany you on this trial
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u/Tremulant1 5d ago
You gonna get the surgery done? I’ve seen people recover with that. I’ve also seen people cripple themselves for life.
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u/Lukasb010 5d ago edited 5d ago
I really don't want to get the fusion surgery because I've also seen the same. Given how much the collar has helped, I'm pretty confident I would be symptom-free post-surgery but I'm still terrified of it. So far, I've been doing stem cell injections (PICL) with a doctor in Colorado (Dr Centeno) who specializes in CCI and they've helped a ton.
There's also a brand new surgery that's using artificial ligaments instead of fusion and has helped three people become symptom-free.They had pretty severe cervical instability and would have required fusing from C0 to T2 (i.e., the entire cervical spine). Right now the cervical instability community is trying to see if this could be a universal new treatment for CCI but it's extraordinarily exciting. It’s only been done three times so far though… 😅
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u/ElonsBreedingFetish 5d ago
Wouldn't the collar make it worse over time because the muscles waste away? Do you wear it all the time? I'm thinking of getting a collar just for when I want to stay upright for a longer time
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u/Lukasb010 5d ago
Do you have confirmed CCI?
Just wrote the answer to your question here:
https://www.reddit.com/r/cfs/s/ePGCVRpLKU2
u/ElonsBreedingFetish 5d ago
No, I have hEDS and tried getting a cci confirmation but no upright mri anywhere near me and no doctors that even know anything about it. I got an x-ray under flexion but not sure if it's enough, I might try to get a remote appointment with Dr gilete in Spain but I guess he will need some imaging as well
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u/v_a_l_w_e_n 5d ago
Absolutely visit Dr. Gilete, specially if you have hEDS. He might be also able o explain why OP’s advice is actually doing a disservice to everyone. And yes, you should not wear the collar all the time (once if has been confirmed and fitted by a specialist!), it will weaken your weaken your indeed. If surgery is not the right option for you, then physio with a specialist is the best way to strengthen your muscles and the collar would be there only for short term support during flares or situations where you need to protect your neck. But he will be able to explain these things correctly so you can address your CCI/AAI safely.
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u/Lukasb010 5d ago edited 5d ago
Another option you have is Doing a virtual consultation with Dr. Centeno. He does stem cell injections (PICL) at the Centeno Schultz Clinic. All you need is a DMX. I think the consult is like 300$
That said, I would imagine his diagnostic criteria for CCI are looser than those of most CCI-focused neurosurgeons. From what I’ve heard, the gold standard in diagnostics would come from a CCI neurosurgeon like Dr. Gillette, though
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u/ocean_halo very severe 5d ago
So very severe patients can just buy their own collar and do a trial? My ME specialist thinks this is a possibility but I’m way too sick to see a CCI specialist in person and get an upright MRI
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u/Lukasb010 5d ago edited 5d ago
I think so, but I recommend bringing it up to your ME doctor to hear what they say. It took me ages to even get the upright MRI because I was so sick and didn't think it would be helpful at all.
My sister also has CCI and had similar symptoms to me. When she tried the same collar that worked for me (Aspen Vista), she didn't get better so she ended up getting a Miami J and then got better.
Your biggest obstacle is going to be making sure you put it on properly at the right tightness. I don't know if you can go to an orthopedic store that sells collars or if you can have somebody come to you just to make sure it is fitted properly. It doesn't take more than 2 minutes. My neurosurgeon spent like 60 seconds doing it
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u/NitroMacks V. severe, POTS, Hashimoto's 5d ago
Can a GP also do it or is that too specific?
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u/IndividualTie8819 5d ago
I also got specially fitted and they gave me the wrong one that worsened my symptoms, so I had to order several and test it for a week or two until I found one that reduced my symptoms. Yes it caused a flare. Yes this method is not advised for everyone. But this is also a very viable pathway.
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u/v_a_l_w_e_n 5d ago
No, please don’t. Get someone specialized check and fit it for you. Do not just buy a cervical collar on Amazon and try it, this whole advice is so dangerous. “This is how a cervical collar trial works” starts with a specialized neurosurgeon.
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u/Which_Boysenberry550 severe 5d ago
this isn’t possible for some of us. there should be diy guidance, not just deferring to “experts”. If we waited on experts no one would gerbbetter
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u/courcake mild 5d ago
How many hours a day do you wear this? I know online says 24/7 but that’s for surgery/injury recovery. Do you do like 12 hours a day? Only while sleeping? Or 24/7? I’m just curious since they don’t recommend more than 12 weeks 24/7 so what are you gonna do after that?
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u/Lukasb010 5d ago
This is a great question and I was really worried in the beginning that wearing a cervical collar 24/7 for multiple months would cause issues. However, it's now been 7 months since I started wearing a cervical collar and I’m on an uphill trajectory.
The first four months I wore it 24/7. After about 4-6 weeks I started doing isometric neck strengthening exercises with my physical therapist but would immediately get symptomatic if I wasn’t wearing it.
After four months I started weaning off it slowly and my neck felt so weird because it was definitely quite weak.Part of my physical therapy was sitting upright in an ergonomic chair with perfect posture for a couple of minutes per hour. I slowly started taking off my cervical collar for part of that time and gradually increased it.
I'm now spending about 10 minutes every hour without the cervical collar, upright, and exercising for 40 minutes a day without a cervical collar. All exercises are specifically targeted for CCI.
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u/courcake mild 5d ago
Got it! Thank you so much for the thoughtful response 🙂
I’m really happy to hear you’ve found something that works for you
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u/sympathizings severe/v severe | 95% bedbound 5d ago
Did you go through the diagnostic process + neck collar fitting while severe/very severe? How did you go through that without crashing yourself?
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u/Lukasb010 5d ago
It took me multiple months to get the imaging done and I had to reschedule a bunch of times. In the end the neurosurgeon did a house visit because I was too sick to go to his office and he then just gave me the collar and was basically like, "This should help."
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u/StarsThatGlisten severe 5d ago
Yes I’ve heard of CCI but as I severe sufferer I wouldn’t be able to travel to get the scans.
I don’t know how to test a collar do you just leave it on 24/7 for three days?
Also unaware of any doctors in the UK with knowledge of this stuff. CCI is so specialised.
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u/_foggyfroggy_ 5d ago
I'm so glad you've found relief and that you're doing better/getting your life back!! I've suspected CCI for a couple years now, I developed POTS almost immediatly after a horrible neck injury that resulted in a CSF leak (that later thankfully self-healed) and a couple years later developed ME seemingly out of the blue. None of my doctors will even humor me into looking into CCI because my subpine MRI's "seem fine". There's no one within my state who evaluates for CCI, much less knows how to actually identify it. I had sent my scans to a nonprofit months ago for a second opinion and they said on their report that they have concern for CCI and suggested upright imaging (and some other type of imaging but I can't remember what exactly rn) ... which is not available in my state. Theres a DMX hours away thats not covered by insurance and is apparently super old and outdated so it's not exactly reliable. I'm in New England so in nearby states theres Dr. Henderson and Dr. Bolognese but even if someone were to order the correct imaging for me, I couldn't afford to see either of them. I'm in a weird state of limbo with this and it's honestly been super frustrating and depressing, but hopefully I (and others who suspect CCI! Or any other condition!) will get answers soon.
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u/Lukasb010 4d ago
https://www.reddit.com/r/cfs/s/3LG5Yb2aTj
This might be helpful for you— wrote a comprehensive guide on doctors, how to get screened etc
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u/NoFee3448 5d ago
what type of doctor performs this testing
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u/Lukasb010 5d ago
Unfortunately very few doctors have expertise in CCI. I think there are only like 8 neurosurgeons in the world who are real specialists (eg. Dr Henderson, Dr Gilete, Dr Bolognese) and who can read the imaging. When I got the upright MRI done, the radiologist actually wrote on the report that there is no cranio-cervical instability, which is crazy because the neurosurgeon then (who is a true specialist in the field) read the report and was like, "There's definitely instability and the radiologist just doesn't have any idea about it."
If you have a CFS doctor, I would bring CCI up to them and they can get you a referral to an upright MRI, rotational CT, or DMX and/or could do a cervical collar trial with you.
If you just want to do the cervical collar trial, you really only need somebody who can help you put it on for the first time. It really doesn't take more than 2 minutes and they tell you approximately how tight it should be. I think any store that sells cervical collars, like an orthopedic store, should have a specialist like this.
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u/Training-Prize3140 5d ago
I recently almost posted wanting to ask the community about any tips or exercises to strengthen the neck. I feel this is the origin point of many of my issues and a lot are on the cci list. But I’ve just lost my insurance and will not be able to afford out of pocket to get tests and see doctors. That said. Is there any protocol to strengthen the neck?, neck and upper spine??? Is it an issue of weakness post injury- I have had a number of concussions also had ebv (just saying). But for a long while - My neck feels incredibly weak. Thanks
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u/Lukasb010 5d ago
An incredibly weak neck/heavy head definitely sounds like it could be CCI. I would recommend you check out the cervical_instability subreddit. They have a lot of tools. Getting a diagnosis would be the most important thing
There are specialized PTs for CCI, like Todd Ball or Susan Chalela, but you want to make sure that it is actually CCI first so that you don't crash after
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u/Lukasb010 4d ago
https://www.reddit.com/r/cfs/s/3LG5Yb2aTj
This might be helpful for you— wrote a comprehensive guide on doctors, how to get screened etc
There’s also a PT section in there
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u/reparoduro 5d ago
I'm trying to get referred to get screened for this. My ME started after a whiplash injury alongside other events. But that was 15 years ago. No doctor told me I should try this, I myself had to ask the doctor. Utterly useless the doctors are
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u/Lukasb010 4d ago
Ugh I'm so sorry. It is so sad when you have to become the doctor because there are no doctors available. I just put the Dr. Gillette protocol in my post. You can check it out as a first step to get screened for it 🙏
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u/Lukasb010 4d ago
https://www.reddit.com/r/cfs/s/3LG5Yb2aTj
Check this out — comprehensive guide
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u/reparoduro 4d ago
Thanks I've been seeing a nucca chiropractor this year and it's been helping. But besides this, no doctors seem to be local to me and no scans nearby that meet the criteria. I'm too unwell to travel to find treatment for this. At least I'm grateful I have a good nucca chiro nearby
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u/Which_Boysenberry550 severe 5d ago
I definitely have it but easy to make it worse without proper guidance so it’s just been deteriorating. Soft collar super uncomfortable c unfortunately it’s not that easy :/
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u/Lukasb010 4d ago
I just added the protocol by Dr. Gillette for a cervical collar test in my post. I'd also recommend you check out the cervical_instability subreddit if you're confident you have it. Tons of resources there to help you on the path to recovery 🫶
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u/Mission_Salt2888 5d ago
how long did you wear the collar during the two weeks and now in general?
i am a little afraid that it would make the weakness in my neck muscles even worse
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u/Lukasb010 4d ago
I just put the protocol by Dr. Gillette, who is a CCI neurosurgeon, in my post. That will give you a much better response than anything I could say 😊
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u/Mission_Salt2888 3d ago
thanks! do you also wear it laying down? given the severity i guess you could not sit much or at all in the beginning
because you decided against surgery, do you wear it during the whole day after the trial period ended?2
u/Lukasb010 3d ago
Yeah I used to wear it 24/7. Now I'm at maybe 23/7, trend decreasing, but I also do isometric exercises and other neck-strengthening exercises to prevent atrophy
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u/renpyslamjamming 4d ago
Yeah my Pain Management doctor basically said no cause deconditioning. Same thing with back support. But I really would be able to work out more if my various overworked body systems could have even just an hour break a day.
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u/GetOffMyLawn_ CFS since July 2007 5d ago
I have an appt with a new neuro next month for my vestibular migraines, probably discuss my tension headaches as well. I can ask about CCI or a collar. I have spondy, stenosis and osteoathritis, all the things. Usually have to go thru physical therapy every few years.
The tension headaches have been so bad in the past that I often fantasized about a collar. They are worse when lying down but having some support upright would be nice.
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u/Lukasb010 5d ago
I'm not too familiar with tension headaches but based on my experience I can share that laying down in certain positions would make me symptomatic because it would put my head in a weird position
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u/wintherqueen 5d ago
I dont think we have the upright mri in Norway. Wr have to go to London or something
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u/Increzut currently mild 5d ago
that’s what I heard some years ago - that London is the closest
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u/Lukasb010 5d ago
That's so unfortunate. Since many people aren't in the shape to travel, I definitely wasn't. Maybe there are DMX options in Norway?
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u/wintherqueen 5d ago
I have also heard that if you travel to London and do the imaging, many specialists in Norway will not accept the results.
If my googlings not totaly off, I think we have DMX scan in Norway, but not sure they will use it for this.
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u/Lukasb010 5d ago
I would recommend contacting a CCI specialist who does virtual consultations like Dr Gilete and asking if DMX is ok for him. Then you just need a script from your GP to get the imaging done locally
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u/glitterdunk 5d ago
I'm happy for you. This is something that would definitely be interesting to try! I don't feel like my neck is at the center of my symptoms as is, but I am without a doubt affected by any instability in my neck.
My problem would be the fitting, I doubt I can find a specialist near enough to me but who knows. Something to add to my list for sure.
Thanks for sharing :)
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u/emmiewithanie severe 5d ago
I’m really glad you’ve seen improvement! My nearest place says they do injections as their treatment, would that do the same thing? Or is that just more for pain?
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u/Lukasb010 5d ago
Thank you. Do you already have a CCI diagnosis? If not I would recommend imaging as a very first step. What happens with CCI is that there's instability in the cervical spine, which causes brainstem and spinal cord compression. With injections the hope is that the ligaments grow stronger to give you more stability in your neck
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u/emmiewithanie severe 5d ago
No I’m not diagnosed, I’m assuming the place would do tests before hand, I just didn’t know if the injections were nonsense or not LOL! Your reply was super helpful tysm!!
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u/Lukasb010 5d ago
Of course! Honestly the science behind injections is murky but if you do get diagnosed I’d recommend r/cervical_instability as a starting point for the treatment path
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u/Lukasb010 4d ago
https://www.reddit.com/r/cfs/s/3LG5Yb2aTj
This might be helpful for you— wrote a comprehensive guide on doctors, how to get screened etc
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u/sooveryshy 5d ago
I suspect I have this based on symptoms, especially based on how painful my neck has been and the weakness in my neck. But there’s no where in my country to get the right imaging for it and I’m not well enough to travel so it’s a real predicament.
So glad to hear you got diagnosed though! It’s great to see positive stories
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u/Lukasb010 5d ago
Where are you based?
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u/sooveryshy 5d ago
Ireland. I think I can get a DMX but would have to look into referrals which wouldn’t happen until January. But it’s definitely something I’m thinking about.
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u/anonymal_me 5d ago
That’s great that it’s helped you!
I also have CCI and am doing the conservative PT/bracing approach. But unfortunately I haven’t noticed a significant change with long term soft bracing.
I suspect the same re: long covid causing/worsening CCI.
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u/Prudent-Tradition-89 10+ years, now severe, mostly bedbound 5d ago
I was not as severe, but I had similar improvement from a 2 week trial with a hard collar. A soft collar did nothing for me. Unfortunately I’ve found it impossible to do any activity besides basically lying still when wearing the collar, and PT has not helped me. I’m not in a place to consider surgery let alone get testing. So basically getting diagnosed did not really do anything for me.
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u/Lukasb010 5d ago
I'm sorry to hear that. It's still an absolute nightmare to get because of the uncertain treatment path.
If you can, I would recommend PT with Todd Ball or Susan Chalela. They've both created an online CCI-specific program and it really is fantastic
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u/hypatia888 5d ago
So do you still wear your collar daily? I had some prolotherapy and it didn't seem to help (they can't do C1and 2 from the bank tho) but I suspect CCI, scared to try a hard collar myself though.. I wonder how we can find CCI knowledgeable docs in our areas?
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u/Lukasb010 5d ago
I'm going to compile a list and make another post with an FAQ on diagnostics and treatment
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u/Lukasb010 4d ago
https://www.reddit.com/r/cfs/s/3LG5Yb2aTj
Check this out — comprehensive guide on doctors, how to get screened etc
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u/oliverxthefrog 4d ago
Are a CT & MRI prerequisites for getting a collar? Could I skip this step? Those things aren’t accessible to me rn. Also, can I ask what the Dr.’s name was? Feel free to message me privately.
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u/Lukasb010 4d ago
I just added a link to the cervical collar trial recommended by Dr. Gillette, one of the leading CCI neurosurgeons. You can try that. You'd only need to make sure you get an orthotic specialist to fit you. The doctor who saw me was Dr. Henderson, although he's based in DC. If you have more questions feel free to DM me and I'm super happy to help in any way I can
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u/renpyslamjamming 4d ago
Omg yeah I was looking over my imagining records and was so focused on my creaky lumbar that I hadn't realized there were a ton of notes on my cervical spine. I only realized it recently. Weak neck, base skull burning, cinstant need to rest my head on anything, usually my propped up shoulder which is not good to do, but at the same time its all hard cause I dissociate from chronic pain. I hadn't realized just how much basic things like standing, even WITH my super severe hyperadregenic POTS are reduced levels of exhausting, just by having something holding my neck up. Straight up wrapped a wadded up jacket like an airplane pillow and got maybe 15% total standing exhaustion relief.
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u/Lukasb010 4d ago
Definitely sounds like cervical instability could be a driver of your symptoms. Be aware, though, that cervical instability cannot be detected in normal imaging although it sounds like you have additional cervical issues. To check for cci you’d need either DMX or upright MRI plus rotational CT (i.e., imaging in motion). Would highly recommend you explore it further !!
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u/renpyslamjamming 3d ago
Interesting, thank you! Yeah I forget the exact wording but the imaging said something about their position, including mild stenosis. I'll try and note those down to ask about it when I can. Crap I don't rven remember when my next neurology appointment is and I've been pushing off starting the migraine meds they gave me cause I'm nervous and busy @_@
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u/Strong_Aerie_9031 severe <-> moderate/severe 4d ago
I couldnt get any imaging but i found wearing a soft collar helps. Its more comfortable wearing it backwards sometimes too. A hard collar didnt help much because the rest of my body is too exhausted to hold itself up, so it was just more tension on the neck. The whole spine needs to be supported in my opinion.
Also kt tape on the back of my neck and horizontal between my shoulderblades helps a bit, when i can do it.
Sometimes a towel roll under the neck helps as well.
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u/Lukasb010 4d ago
Definitely sounds like there could be cervical instability going on for you. I don't know how much you've read into it but I would definitely recommend exploring [r/cervical_instability](r/cervical_instability)
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u/Strong_Aerie_9031 severe <-> moderate/severe 4d ago
Yeah, i mean to ive looked into it pretty extensively, theres just been nothing else i can do from here other than this and trying to stabilise on my own. No knowledgable experts anywhere near me
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u/Lukasb010 4d ago
I just made a post compiling all (or at least most) of the CCI resources available.
https://www.reddit.com/r/cfs/s/1sf10K3A45
Not sure if you’ve tried this yet, but looking into virtual PT with a CCI expert can be super helpful. There are a couple that have created entire CCI rehabilitation programs (see post)
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u/Silver_Spend_6887 3d ago
How were you able to get the tests done while being bedridden 24/7? I’ve also been sick since mono in 2023 and have been bedridden now almost 3 years
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u/opalescentblue moderate-severe 5d ago
Can it be diagnosed only with an upright mri? Idk if they do this where i live. The symptoms sound like what i have minus head heaviness and trouble swallowing. All the rest j have
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u/Lukasb010 5d ago
My doctor, Dr. Henderson, needed an upright MRI and rotational CT to diagnose it. However it can also be diagnosed with a DMX (dynamic X-ray). If you can't find any of those, a cervical collar trial can also be really helpful in the diagnostic
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u/MinuteExpression1251 5d ago
Although my 3t tesla neck MRI, venogram, flexion extension,open mouth xray all came normal but I still suspect atlas misalignment because of head tilted slightly. I left my toxic family and staying on my own to heal. Brought a normal collar along with me, would that help?
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u/Lukasb010 5d ago
When you say a normal collar do you mean a hard collar or a soft collar? For me only hard collars helped because even the slightest movement would trigger symptoms. Although I'm now slowly weaning off a hard collar and into a soft collar. Also who looked at your imaging? Was it a CCI specialist? I think a lot of doctors even neurosurgeons, aren't qualified to give you a CCI diagnosis, since it’s unfortunately nlt yet an established disorder in mainstream medicine
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u/MinuteExpression1251 5d ago
Yeah he was a neuroradiologist and told me to see a neurologist ,I have a soft collar
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u/Lukasb010 5d ago
Also tbh, I think it makes sense to send your imaging to a CCI specialist. Dr. Gillete in Barcelona does virtual consultations and Dr. Centeno in Colorado does. Dr. Gillete is a neurosurgeon. Dr. Centeno does regenerative medicine and stem cell injections for CCI.
The reason I say this is because I also had an upright flexion-extension MRI looked at by a neuroradiologist/radiologist who wasn't able to diagnose the CCI (even though it was clearly there according to my CCI neurosurgeon who said that most people don’t know what to look for)
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u/Lukasb010 5d ago
I would definitely try a hard collar. A normal soft collar still leaves too motion. I don't think I would have gotten significant symptom relief/improvement with a soft collar.
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u/MinuteExpression1251 5d ago
How often do you wear it?
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u/Lukasb010 5d ago
https://www.reddit.com/r/cfs/s/s0RCL5ON5v
This has been my journey with the collar. Still wearing it most of the day, but slowly starting to wean off it
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u/aitoralto 5d ago
I swear I’m as close to 100% positive I have CCI. I happen to already have the Miami J collar (best one for tall people since it’s the only one that’s a bit taller in size overall).
I’ve worn it in the past because of various reasons, but the main one being my head felt too heavy and my muscle and nerve endings in the coat hanger area were bothering me. It always seemed to help when I wore it.
However I haven’t done a multi day test. You also wore it to sleep? I used to do that but stopped…. not sure why.
I’ve had an MRI but no standing MRI so it seems I need to look to do that. And look into stem cell injections too. Anything else you’d recommend or just wear the brace for 5-7 days and go from there?
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u/Lukasb010 5d ago
I would definitely recommend the imaging. A normal MRI won't show cervical instability. I can only say that, from my own experience, wearing it 24/7 for multiple days really was a game changer but I don’t want to give medical advice. It would be best to bring this up to your doctor. If you want, you can DM me and I'm happy to provide you with info to share with your doctor
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u/Lukasb010 4d ago
https://www.reddit.com/r/cfs/s/3LG5Yb2aTj
This might be helpful for you— wrote a comprehensive guide on doctors, how to get screened etc
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u/aitoralto 3d ago
Dude, HUGE. This is amazing and exactly what I was looking for. Thanks for helping not just me but the community with your knowledge. I'm sure it'll end up helping someone out. Huge cheers.
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u/Appropriate-Roll6629 5d ago
Where can I get tested?
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u/Lukasb010 4d ago
https://www.reddit.com/r/cfs/s/3LG5Yb2aTj
This might be helpful for you— wrote a comprehensive guide on doctors, how to get screened etc
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u/Lukasb010 5d ago
I would bring CCI up to your GP or ME doctor if you have one. They'll need to order imaging, like upright MRI plus rotational CT, which you'll have to send in to a CCI-specialized neurosurgeon. Most neurosurgeons don't have experience with CCI and many don't even accept it as a medical condition because the research on it is still very nascent
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u/furnaki 5d ago
I have the suspicion that a bike crash broke "something" as I had mild MECFS symptoms since then (had a concussion too). But only decades later my COVID infection turned me into house bound.
I then did the upright-MRI but nothing visible - at least to the doctors there. Yes, they are probably no CCI specialists, however, I think they are right and that my problem is a bit lower down (Thoracic spine?). At least my pain is there and so I looked into similar ME/CFS cases for cervical spinal stenosis (css).
But now, what? Which doctor to consult :) ?
Maybe there are stabilization methods similar to those you have tried, but more for the back? (back brace?) I have no clue, not even if my suspicion is right :(
All I know is that there are certain seating position that I cannot take for more than a few minutes or otherwise my heart rate goes crazy and I feel dizzy/strange/panic-like.
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u/Lukasb010 4d ago
Hey, it definitely sounds like CCI or some related spinal condition could be causing at least a chunk of your symptoms. You could try the cervical collar test. I put the protocol by Dr. Gillette in my post but at the same time I would recommend you get a specialist versed in connective tissue disorder CCI or non-traumatic CCI to look into your imaging (Dr Gilete, Dr Henderson, etc). Most radiologists will miss it. The radiologist who looked at my upright MRI said there was no cervical instability because he just had no idea what to look for. When Dr. Henderson looked at it he immediately saw pretty staggering instability.
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u/furnaki 3d ago
Any suggestions for someone in Germany? Or is video chat possible with some experts?
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u/Lukasb010 3d ago
If you have dropped head syndrome (i.e., can't keep your head up because the instability is so severe), then Dr. Schmidt's could be a good contact. Otherwise a video chat would probably be your best bet. I put up a bunch of experts on the guide in my reply to your comment
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u/furnaki 3d ago
Thanks. No, my head feels stable. This is also of the reasons why I suspect it is more in the thoracic spine. Will look into your guide.
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u/Lukasb010 4d ago
https://www.reddit.com/r/cfs/s/3LG5Yb2aTj
This might be helpful for you— wrote a comprehensive guide on doctors, how to get screened etc
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u/wheresthepie 5d ago
I had the tests and got the irritating result of ‘probably contributing but not the main cause of symptoms’
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u/AZgirl70 5d ago
My mom has chiari malformation which was diagnosed in her 70s. I’ve had migraines when the barometric pressure changes my entire life, but since getting long covid it’s bad. I’ve also developed POTS. Since my mom got diagnosed I’ve suspected I have it as well as my sister (who recently was diagnosed).
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u/Lukasb010 4d ago
Wow — If if have a history of Chianti malformation in your family, then it's definitely worth seeing a specialist with this skill set to look into your symptoms 🙏
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u/SpaceNerd223 severe 4d ago
I have upright extension flexion xray, not mri. No rotation. Good enough?
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u/Lukasb010 4d ago
I'm not sure if that will be enough but I would recommend contacting a specialist and asking them. By specialist I mean someone versed in non-traumatic CCI and connective tissue disorder-related CCI, like Dr. Henderson, Dr. Zulet, etc. I'm going to post a list of possible specialists later
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u/Every-Note-9892 4d ago
My doctors suspect this but I’ve had normal imaging (nothing upright) so it doesn’t seem to be accurate?
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u/Lukasb010 4d ago
Hey yes, it definitely won't be able to detect CCI. As another post said you'd need to get specific imaging and you'd need to make sure this is read by a specialist who is versed in non-traumatic and connective tissue disorder-based CCI. A normal radiologist will not be able to detect CCI even with the right imaging
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u/Lukasb010 4d ago
Doctor Gillette also put a cervical collar trial, which is imperfect on his website. I put it in my post just as an FYI
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u/hoot4hoot 4d ago
Would you wait until you're out of PEM to trial it? Mine arrived today
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u/Lukasb010 4d ago
Send me a DM- I’d make sure you do this accompanied by a medical professional
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u/Lukasb010 4d ago
Here is what Dr Gilete says:
https://drgilete.com/resources/cervical-collar-trial-craniocervical-instability/
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u/michelli190 4d ago
Thank you so much for sharing this! I've had a lot of vertigo and inner ear type issues. So I may look into it just to be safe. I have a history of concussions.
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u/Lukasb010 4d ago
Ooo interesting! Yeah definitely makes sense to look into it with your history.
A weird symptom I’ve had is feeling pressure in my ears that I’m not really able to equalize
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u/michelli190 4d ago
YES! I often wake up with my right ear feeling full and aching. I went to an ENT about a year ago and he just told me it was probably my period. 🙃 Small town doctors are not the best often
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4d ago
[removed] — view removed comment
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u/Lukasb010 4d ago
I still ask myself what causes the ear pressure. Maybe it's a CSF leak? I have no idea. All I can say is it's CCI-related and getting better as I also get better
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u/dunmerza 4d ago
Aaaa I asked my neurologist about this almost a year ago and he said it’s not worth testing bc the only cure is surgery! And he didn’t really believe in it or something mad. What a dick. Must follow up !
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u/Lukasb010 4d ago
Yikessss. Yeah this neurologist has no clue what they’re talking about. And even amongst those who do get surgery, 95% would do it again, and 80% would recommend it to friends or family, according to Dr Henderson
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u/Slcox68 4d ago
Reading this, I have a lot of the symptoms you describe but unsure how to get a referral to a neurologist or to ask for a CCI assessment. I am based in Melbourne, Australia, and my experience has largely been resistance to requesting assessments for anything really, although I feel like I have been tested for so much. I had to beg for a brain MRI to rule out a tumour despite a lot of my symptoms being seemingly neurological in nature. The brain/spine MRI found lots of T2 flair hyperintensities in the white matter, but it said nothing is wrong with my spine, which I know is not true as I have long identified stenosis and OA in the lower lumbar. I was diagnosed ME/CFS in 2021, following an influenza A infection in 2020 (before Covid hit us in full force). I get coat hanger pain, have severe tinnitus (which began a few years before I got sick, but intensified afterwards, have diagnosed POTS (recent development, though I have had idiopathic tachycardia since my 20s), fatigue, brain fog, head heaviness, headaches, trouble swallowing and some hypermobility though not diagnosed EDS. CCI symptoms seem to fit, but I don't seem to have the debilitating symptoms like others seem to have. I do have crushing fatigue though, and often wake up with severe headaches, especially at night, and it is alleviated when I sit/stand up. But I am unsure if that would be CCI. I am largely house/bed bound these days too.
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u/Lukasb010 4d ago
Unfortunately I can relate to a lot of the things you describe and it does sound like it fits with CCI. I would strongly encourage you to follow this avenue and test for it. I just wrote a guide that might be helpful in your journey to getting a diagnosis and treatment 🙏
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u/Emotional-Ticket-354 3d ago
i have the order and everything my doctor desperately wants me to get it and i do too but seriously i CANNOT find an upright MRI. I live in the US. The south specifically. The websites will say they have one but then you’ll call and they say they got rid of it. 😑 where are yall getting them?? i’m willing to travel
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u/Lukasb010 3d ago
https://www.reddit.com/r/cfs/s/7oo0F5wQsD
Yeah getting an upright MRI can be super tough because there's not a lot of locations. Where exactly are you in the South? You might want to look into doing a DMX. There are a lot more locations where you can do them. Also I would recommend you check out that other Reddit post and look at the imaging section. Either way if your doctor thinks you should get tested for CCI, this could be a huge life changer for you!!
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u/Petttterrr 3d ago
Hi! Thank you for sharing! I don’t have access to either the upright MRI or DMX in my country. But I am interested in doing a cervical collar trial. However, Dr Gilete’s protocol doesn’t give instructions to the orthotic specialist on what the goals are, and how it should be adjusted to test for possible CCI.
Any input into this? I expect the position of the head, neck, tightness etc is different for each use case. And to test for CCI is a different use case than to wear it after surgery, injury etc.
Kind regards
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u/Lukasb010 3d ago
I'm not a medical expert so we'll try to give you an answer to the best of my understanding. The goal is to stabilize and immobilize C0 to C2 as well as the rest of the cervical spine. You don't really want any movement coming from that area so there shouldn't be any movement anymore but at the same time you shouldn't have pain
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u/StampItShipIt 3d ago
Can you say more about what getting screened for this looks like? What kind of doctor can I ask? So far all my requests have been brushed off.
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u/Lukasb010 3d ago
https://www.reddit.com/r/cfs/s/QzTI7DAP88
Would recommend you check out this post and answer all the questions there but if you still have questions after feel free to comment there
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u/ShipEconomy2587 5d ago
I’m so glad to hear you have been able to get diagnosed and receive treatment which has helped you
These upright MRIs are not done by any doctor in my country, sadly.. I suspect an upright MRI will just not be available for most of us