Jennifer Brea: I have craniocervical and atlantoaxial instability

[Gingergrrl]

Sorry about that. Perhaps it was in Rowe’s video? There is a case study where someone’s brain actually descends from the top of their skull by what looks like an inch. Not everyone has a headache, but it is a common symptom. Regardless, with *any* symptom that is positional, one should strongly suspect IMHO a structural cause.

No worries and it was an interesting video! I wanted to update you (and others following this thread) that after I said that I do not get headaches, I've had a severe headache the last 2 days b/c my neck pain got much worse. I normally have PT every Sat morning but I had to cancel it this morning b/c my neck pain was so severe (even though ironically, my PT would have worked on my neck and it could have helped ).

My neck pain has two main causes: a major car accident in 2006 when my car flipped upside down and I had whiplash, and then an arm injury to my right triceps tendon in 2010 (from Levaquin). I could not use my right arm so my right shoulder, and right side of my neck, had to compensate for the arm. It's often difficult for me to tell if the arm pain triggers the neck pain or vice versa. But the last couple days, the neck pain is excruciating and is so bad that it caused a headache. I am taking pain pills, using Salonpas (pain patches), and lying down with ice packs on my neck and literally nothing is helping.

This is the first time I am wondering about CCI and I have a phone consult w/my doctor on Tues (for other reasons) and plan to ask him if he thinks CCI could be relevant to my case. He is the same doctor who treats Jeff and is very familiar w/this issue. I am 100% certain that autoimmunity is at the core of my illness (since I had 11 autoantibodies and high dose IVIG and Rituximab put me into remission) but like you said very eloquently, most of us have multiple problems going on and autoimmunity does not exclude me from having a severe neck injury from my car accident that is currently getting worse (possibly b/c I am more active now and doing PT & Pilates)?

The only position that truly improves the neck pain is bending my neck forward so my chin touches my chest to stretch out the back of my neck. Does this match with CCI or would it be the exact opposite? I am a novice with understanding this even though I saw Jeff go through his whole nightmare experience (and amazing outcome).

Now this can occur no matter what position I am in if I am not wearing my collar. For the first several months, it was only while laying down. It’s still much, much worse laying down simply because when my head is resting on a pillow, I am putting direct pressure on it, causing to slide out of place (relative to the first vertebra). For a period of time, as my symptoms worsened but before I started using a thoracic extension for my brace, I had to sleep sitting up.

I don't have a collar and when I tried one (many years ago) it did not help me but I have no idea how it might be now. For me, the neck pain improves when lying down with ice on the back of my neck but it is only a partial improvement. Yesterday the pain was a 10/10 and I couldn't type on PR at all (or do much of anything) and right now I'd say it's about an 8/10 and I am typing this b/c it is important but then going to lie down w/ice on my neck again.

Neither do I. At least, I didn’t pre-thyroid surgery (at least, not since my onset). After the surgery, I’d only get the classic occipital + neck pain when moving my neck into positions that deliberately provoked symptoms for exams or imaging. But headache not a major sx for me.

Thx for clarifying that headache was not a major symptom for you (and it was not for me either until the last few days when my neck pain got so much worse).

Neither do I and neither does Jeff (at least by current diagnostic criteria).

Thx and I am definitely NOT hypermobile whatsoever. I don't have any joints that sublax and I am not flexible by any standard. I don't even think my neck is flexible vs. that it has stenosis and radiculopathy down my arm. It is killing me at the moment where I could from the neck pain

This is a clue that you have another explanation for your symptoms, to be sure. However, small fibre neuropathy is extremely common in ME, EDS, fibro, etc. (for which IVIG is a treatment). I don’t think these things are mutually exclusive. The breathing problems Jeff and I had are not a common symptom of CCI/AAI.

I definitely 100% have autoimmunity and the treatments put my core symptoms of profound muscle weakness, breathing and diaphragm weakness, POTS, and MCAS into remission. It is unclear if I had small fiber neuropathy (but I did have abnormal QSART which showed some neuropathy). We stopped testing once I had eleven auto-antibodies including the LEMS autoantibody. This is why I never felt that my car accident/neck pain was related to my core illness (and it still might not be) but I am really wondering now and don't want to miss something important.

The only way you can know for sure is if you do the imaging and consult with a surgeon. Neck pain can have many causes and if you have chronic neck pain, you should definitely get cervical imaging and consult with spine surgeons knowledgeable in different cervical conditions (not just CCI). No one can tell if you have CCI just from your case notes. You need to be physically examined and imaged.

I am going to ask my doctor if he thinks I should do imaging of my neck and can do it as long as the MRI does not require contrast dye (which I am allergic to). My PT had said that an x-ray of my neck would not be useful b/c she already knows that I have cervical stenosis, cervical radiculopathy, and arthritic changes to my neck and it would not change her treatment plan. But now I am wondering if it would be worth it (an x-ray or MRI?) after all.

If you are in full remission, I wouldn’t worry about this *too* much. But if you have chronic neck pain, I’d try to find out why.

I am close to what I would call full remission but have no idea if it is temporary or permanent b/c I am still doing one of the treatments. And right now w/this level of neck pain, it is hard to think straight .

No, headaches are not required. (They also aren’t a required symptom of spinal fluid leaks.) I don’t think you should consider anything to be a required symptom just because it’s on a symptom list. My impression is that required symptoms are generally only a part of diagnostic criteria that are syndromes, i.e., where the pathology is unknown. With most conditions, no symptom is present in 100% of cases.

This has always been my feeling (that nothing is absolutely a "required" symptom of any diagnosis b/c we are all such "unique snowflakes" to use a term from a PR friend of mine). I was a near perfect match for MCAS with 35+ out of 50 symptoms listed by the Masto Society, and also a pretty classic case of POTS, but on other things I was not a good match (although I am a much closer match to LEMS than I was to ME/CFS).

I never had shortness of breath. I stopped breathing full stop. I don’t know if you have CCI but that isn’t the most important thing. What is important is that you had an accident and now have chronic neck pain. There can be many structural reasons for this, and you should try to figure out why.

Thank you for clarifying and I never stopped breathing full stop like you did and that must have been incredibly scary! I had profound shortness of breath and could not inhale a full breath to my diaphragm (at worst only to my shoulders) and often felt like a tight belt or vice was around my chest and I failed every spirometry test due to muscle weakness. I also had severe POTS. This is all gone now and I am beyond grateful but I am now so curious if the neck pain related to my overall illness or is completely unrelated (as I had assumed for all of these years).

Thank you again for sharing your story and it is going to help a lot of people.

 

[rel8ted]

this crêpe paper-like skin wrinkling is still present in everyone who had it triggered by the virus.

Wondered what that was from, I knew it was not normal.

 

[Hip]

Wondered what that was from, I knew it was not normal.

So you got crêpe paper skin wrinkling too from your virus?

 

[rel8ted]

Yes. When I read your explanation to my hub, he said he figured it was somehow related bc he hasn’t seen it on anyone else.

 

[Mel9]

T

In theory, if it were bad enough, this could be a spinal fluid leak. Bad leaks can cause your brain to sink (think foramen magnum == drain) and actually compress the brainstem from above. Leaks always get worse with standing.

This has really made me think. Recently I was told I had bony spurs in my spine and thought it was the least of my worries so didn’t pursue it medically (spinal ‘bumps’ were something expected after many falls from my days of riding horses).

My ‘POTS’ symptoms seem to fit in with Dr Carrol’s ‘leaky spine’ symptoms. Headaches and ‘wonkiness’ (confusion) when upright for too long (including standing or sitting upright) only stopped by lying down for many hours.

On top of that, my PEM can be agonising all over, but there is a distinct area of pain in my lower back

But now I am confused because my Borrelia infection could also cause ‘real’ POTS? Can I have both?

 

[StarChild56]

T

But now I am confused because my Borrelia infection could also cause ‘real’ POTS? Can I have both?

I can tell you that I have both of those diagnoses by a very respected specialist.

 

[Sparrowhawk]

I've been thinking about this for days.

What if...

What if part of the onset of ME/CFS (from a purely mechanical basis, per this thread) is having spent a few weeks in bed with viral and/or bacterial infections, the simple fact of head-on-pillow for that length of time lengthens and/or weakens the tendons in people who are already pre-disposed to have those issues, just enough to exacerbate fatigue and make recovery challenging. This could work with or without the additional cartilaginous tissue degradation cited in a few of the papers above thread.

Thus we spend a bit more time in bed 'recovering'...and more weakening of the muscles and tendons around this nerve juncture takes place. Then we begin see onset of things like POTS (and behaviorally we suddenly have one more motivation to stay lying down).

And over time other issues like MCS, food sensitivities, and all the neural inflammation, auto-immune issues seen simply because the two-way communication channel between the brain and the rest of the nervous system is compromised. We become more vulnerable to just about everything because this signalling pathway is jammed up, leading to the highly diverse and widely variable carousel of symptoms we have all experienced.

TLDR: this mechanical effect may become a self-reinforcing cycle because the longer we stay in bed, the "looser" and more de-conditioned those tendons and surrounding muscle tissue become. Again, in people who for whatever reason may be predisposed to this (like EDS, folks with past head or neck injuries, etc.).

I had three severe head injuries in my middle school years, decades of martial arts, and my chiropractor has always said my atlas is off by 3 degrees, so in each person's life there may be contributing factors.

Just wanted to throw this out there, feel free to critique.

 

[Seven7]

@Sparrowhawk Well if you go back to the Sofia and others autopsy, there is imflamtion on the gland at the neck ( forgot the name) so if that is inflamed makes sense that it can put pressure on the spine!! As imflamtion goes up and down symptoms subside or get worst!

 

[Diwi9]

I can be added to the CCI list, my MRI's came in positive and will have some additional tests. I will start PT with traction, then re-evaluation. As I've indicated before on PR, part of my symptom profile includes bilateral numbness along my ulnar nerve. So, the plot thickens. Once again, thank you to @jeff_w for talking to me about this and sharing with the rest of the community about your own experience.

 

[Dakota15]

Thank you for sharing @Diwi9

Fingers crossed for you that you will have a similar success story like @jeff_w - please keep us updated on your progress and I'll be thinking of you!

 

[Diwi9]

Thank you for sharing @Diwi9

Fingers crossed for you that you will have a similar success story like @jeff_w - please keep us updated on your progress and I'll be thinking of you!

Thanks, @Dakota15 ...not sure the DX necessarily means surgery just yet. More to do before that becomes an option. FWIW - I am hypermobile in my hands, spine, and shoulders.

 

[Gingergrrl]

I am going to be scheduling an MRI of my neck after talking to my doctor yesterday (who is the same as Jeff's doctor). He asked me a lot of questions, and in my case, he actually doesn't think I have CCI but I do have a neck injury from a prior car accident that is getting worse and I sometimes do have numbness down my right arm (in addition to the pain). He wants me to request my records of an MRI from 2010 which showed cervical stenosis so we can compare it to the new one that I will be arranging.

I have diagnoses of cervical stenosis and cervical radiculopathy but we want to confirm that nothing else is going on b/c he said there could be a relationship between my neck issues and POTS (even though I have confirmed Autoimmune POTS, and the POTS is in remission from autoimmune treatments, so he does not suspect this to be the case).

The MRI will be without contrast dye (which I am allergic to) and I see no down-side to getting it and finding out more about what is going on. I am doing PT and the MRI results should help guide the PT b/c we are not really doing traction. But she does work on my neck every week and it is very helpful (but the benefit is very temporary and then wears off).

 

[outdamnspot]

I talked to my doctor today about this. He scoffed at the idea of Chiari/CCI but said he would do an MRI for my persistent migraines. He's ordered a brain MRI. Does Chiari require an MRI of the neck or is brain sufficient to be diagnostic?

 

[xrayspex]

I am going to be scheduling an MRI of my neck after talking to my doctor yesterday (who is the same as Jeff's doctor). He asked me a lot of questions, and in my case, he actually doesn't think I have CCI but I do have a neck injury from a prior car accident that is getting worse and I sometimes do have numbness down my right arm (in addition to the pain). He wants me to request my records of an MRI from 2010 which showed cervical stenosis so we can compare it to the new one that I will be arranging.

I have diagnoses of cervical stenosis and cervical radiculopathy but we want to confirm that nothing else is going on b/c he said there could be a relationship between my neck issues and POTS (even though I have confirmed Autoimmune POTS, and the POTS is in remission from autoimmune treatments, so he does not suspect this to be the case).

The MRI will be without contrast dye (which I am allergic to) and I see no down-side to getting it and finding out more about what is going on. I am doing PT and the MRI results should help guide the PT b/c we are not really doing traction. But she does work on my neck every week and it is very helpful (but the benefit is very temporary and then wears off).

Gingergrrl---Have you heard of PT Kevin Muldowney? They mention him on the Beyond the Measurement facebook group --he has made a special protocol for EDS you can get on Amazon and take to a local willing PT. I do not know if I have EDS but I do know I have hypermobility and some instability in my neck with stenosis--I watched some of Kevin's vids on youtube and felt his approach would be a good way for me to approach my attempts at strengthening and supporting my neck. His belief is that its not useful to do any adjustment on your neck unless you have first strengthened your whole body and he has designed a protocol with specific order to do that. I feel like its worth a shot because you can go at it really slowly if you want---my neck got more subluxated after hit in head and had a concussion this year. But I dread any sort of manipulation because I get a lot of pain aftermath I think because of the cervical stenosis--too much impingement and when I am "in" it actually hurts more.

 

[Gingergrrl]

Gingergrrl---Have you heard of PT Kevin Muldowney?

I actually have never heard of him.

I do not know if I have EDS but I do know I have hypermobility

In my case, I do not have EDS or any hypermobility and my doctor does not suspect that I have CCI versus he wants to test if the cervical stenosis and radiculopathy have gotten worse.

His belief is that its not useful to do any adjustment on your neck unless you have first strengthened your whole body and he has designed a protocol with specific order to do that.

I agree and I am not doing any kind of adjustments on my neck and never have. My PT does manual work on my neck, ultrasound, heat, etc. I am also doing all kinds of PT exercises and rehab pilates as part of a protocol to try to improve my overall muscle strength which is weak from 3.5 years of using wheelchair. I had autoantibodies that were weakening my muscles which are currently in remission (temporary or permanent remains to be seen).

But the neck injury was from a car accident and arm injury from Levaquin and I basically had a long series of hits/ triggers to the immune system before I even got severe Mono/EBV (like most of us).

Have you been tested for CCI @xrayspex? (Sorry if you just posted this and I missed it)!

 

[xrayspex]

I actually have never heard of him.



In my case, I do not have EDS or any hypermobility and my doctor does not suspect that I have CCI versus he wants to test if the cervical stenosis and radiculopathy have gotten worse.



I agree and I am not doing any kind of adjustments on my neck and never have. My PT does manual work on my neck, ultrasound, heat, etc. I am also doing all kinds of PT exercises and rehab pilates as part of a protocol to try to improve my overall muscle strength which is weak from 3.5 years of using wheelchair. I had autoantibodies that were weakening my muscles which are currently in remission (temporary or permanent remains to be seen).

But the neck injury was from a car accident and arm injury from Levaquin and I basically had a long series of hits/ triggers to the immune system before I even got severe Mono/EBV (like most of us).

Have you been tested for CCI @xrayspex? (Sorry if you just posted this and I missed it)!

Gingergurrl it sounds like you have a good plan you are comfortable with in place with your PT! there are various ways we can go about it. I have local PT and she is willing to support me in doing Kevin's plan. https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880/ref=sr_1_1?ie=UTF8&qid=1542418653&sr=8-1&keywords=kevin muldowney
even though I am not dx with EDS I share some features in common with those folks and think a progressive thoughtful strengthening plan is good idea. (problem is with everything else I have going on now and my need for pacing---some days I haven't been able to do it....I just got a rescue dog, so sometimes its either take her outside or do my PT....gonna have to figure that out )

I was using the word "adjustment" loosely, including any kind of manual therapy in there even myofascial, but everyone is different and you know if what you are doing feels safe or right for you....I had evolved to reacting really poorly to even the little amount of myofascial (cranial sacral off the table now! too reactive) that the intensity and length of pain backlash overshadows my desire to go for any benefit it would give me. this all played out over 25 years though. and some things are improving in me, surprisingly, since the concussion, because i got so much supportive therapy that I never had the last 5 months, OT, PT, vision therapy and tons of informative podcasts and tweaked my diet and started fish oil and collagen (helps my pain surprisingly, usually supplements are iffy for me) so I might try some hands on stuff again. just hate to rock the boat purposely now that I have gotten to a relative homeostasis the last month or so. (every time I even go to eye doctor or dentist it sets off bad neuro and pain stuff )

I don't know if I have CCI or AAI but I suspect I had something along those lines going on with me when I first became symptomatic like 28 years ago after my neck got messed with---atlas orthogony helped calm it down at the time and I am going to go check in with that practitioner again next week and run this all by her and see what her opinion is on cci and aai---atlas orthogony works with stabilizing the atlas and c1/c2 area. mY symptoms started with I had felt like I had to lie down because of neck weakness and pain after my neck was hurt (long story can share another time) and I also felt then and I feel now that the "sob" I started getting at that same time that also made me want ot lie down intermittently every day (since then to now) was emanating from a problem in my neck. I tried to tell that to different practitioners but no one could quite see the connection of how my neck could be related to feelings of lack of oxygen. (I did get tilttable, doc ordered cus I did have low b/p and in 1996 after J Hopkins came out with their data and it was positive) I got my pcp to test my oxygen in his office with that finger device about 9 years ago but my o2 looked normal....but needless to say I have been really intrigued by Jeff and Jen's writings on these topics because they have a lot of the symptoms I have had (lying down flat has been my safest and recovery position since onset--the oxygen hunger subsides the longer I lie flat-)---they have much more extreme cases than I but their writings explain some of the mechanisms and I think it could apply to me as well.

there is myelopathy in neck but I suspect I have some compression in brain stem....just not sure if its better to leave it alone. sometiems its consuming as I think its a big part of brain fog and some vestibular stuff but I dont want to do another flexion mri--had some almost 20 years ago and was permanently set back in some ways....extension dangerous for me.

 

[Seven7]

I watched some of Kevin's vids on youtube

Do you have a link to the YouTube vids? I wnat to strength my neck.
Also to anybody that knows, do you know if having bones at of sucket a lot is EDS?i have not other signs of hyper mobility except about 10 bones out of sucket this year ( we are on month 11!!!)

 

[xrayspex]

at about 59 minutes he discusses issues that can inhibit PT like tethered cord, MAST cell issues etc--he says if person can't progress with his exercise protocol its because of one or more of those complicating issues

I can't find a vid easily on youtube that demonstrates all the different levels of exercises he has in his book but this one gives a flavor---fyi the exercise where you lift leg off floor while on your back you can just life either front of foot or heel if more comfortable

our local library is willing to order books sometimes that might be an avenue to get his book and see how lays out progression of protocol....but if you search around on youtube some patients also talk about and demonstrate some of it too

 

[Gingergrrl]

Gingergurrl it sounds like you have a good plan you are comfortable with in place with your PT!

I had PT this morning and am very comfortable with my PT but she is leaving the clinic and I will only get to see her 2-3 more times . We tried a manual traction device this morning (and I took some pictures of the device on my phone to post on the board) but I will do it in my PT thread so I don't take this one off track.

I was using the word "adjustment" loosely, including any kind of manual therapy in there even myofascial

Thx for explaining and I thought you just meant actual chiropractic adjustments. In that case, my PT does different kinds of manual work on my neck, plus ultrasound, heat, and now this traction machine.

I don't know if I have CCI or AAI but I suspect I had something along those lines going on with me when I first became symptomatic like 28 years ago after my neck got messed with---atlas orthogony helped calm it down at the time and I am going to go check in with that practitioner again next week and run this all by her and see what her opinion is on cci and aai---atlas orthogony works with stabilizing the atlas and c1/c2 area.

I suspect that you might have something along the lines of CCI or AAI from talking w/you in the past (although I did not know the names of it at the time)! I think it is definitely worth you checking out further even if just to rule it out.

I tried to tell that to different practitioners but no one could quite see the connection of how my neck could be related to feelings of lack of oxygen.

There is still so much that the average doctor or practitioner does not know.

but needless to say I have been really intrigued by Jeff and Jen's writings on these topics because they have a lot of the symptoms I have had (lying down flat has been my safest and recovery position since onset--the oxygen hunger subsides the longer I lie flat-)

I also had that (my only safe recovery position for breathing was to lie totally flat) but I also had severe POTS and other problems so it is hard to separate exactly what was causing what

there is myelopathy in neck

I suspect that I have myelopathy in my neck too and I need to start working on arranging my neck MRI. My PT this morning said that the radiculopathy down my arm was the worst when she pressed on C5 and C6. I think my neck MRI in 2010 showed stenosis with C3 and C4 (but this is from memory and I need to get the records).

 

[jpcv]

I would like to say thanks to @jeff_w and @JenB for telling their stories and for spreading the word about CCI and hypermobility.
We have a WhatsApp group of patients and these subjects have been discussed recently.
It turns out that one of the patients in the group has been found to have hipermobility and neck symptoms , along with headache.
She improved a lot with a neck collar and now she will consult a specialist .
Many thanks!