Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[frozenborderline]

I was reading about Post-polio syndrome recently. One theory is that it is to do with problems with the nervous system. https://en.wikipedia.org/wiki/Post-polio_syndrome

Thinking about nerves got me onto the ME/CFS researcher Michael van Elzakker who believes the issues in our disease could be traced to the vagus nerve. He thinks ongoing infection or inflammation in the vagus nerve then disrupts all autonomic systems - including the gut, circulation and the immune response.

I wondered: could a virus enter the vagus nerve more easily if the brain stem were compressed? This could be an explanation for a link between CCI and the viral onset of ME/CFS. *If* - and note I consider this highly unlikely given the limited data we have so far - but if in fact a large share of people with me/cfs have cci, it could be because the cci made them susceptible to long-lasting sequelae from their initial infection.

i.e. If you have CCI your mononucleosis virus easily gets into your vagus nerve and ruins it forever, giving you me/cfs symptoms. If not you recover normally. This is the idea.

The problem with this theory seems to be that the vagus nerve is not entirely within the brainstem. They both emerge from the brain in roughly the same place but then they branch off. The vagus heads down the jugular vein and by the time you're in the neck proper the vagus nerve is some way forward of the spine.

I would put a very low probability on the theory I've just described being true. Maybe 0.1%. Just thought I'd throw this out there as a bit of rough thinking that someone might be able to glean a much better idea from!

Imo the simpler link between infectious onset and cci is simply that many viruses can stimulate the immune system to produce mmps which degrade collagen. How much genetic variation could lead to susceptibility I don’t know. But @Hip haa written about this a lot. And then the autonomic nervous system affects the immune system so inability to clear viruses makes sense.

 

[leokitten]

Hi @jeff_w or others may I ask what minimum symptoms are required for suspected CCI/AAI or Chiari? Since evaluation is very time consuming and possibly expensive would like to know before going down this path.

I do not have POTS/OI. My ME caused bradycardia and a significantly slower breathing rate. Though I do have blood flow issues where I’m not getting good blood flow to extremities and have throbbing pain. This is difficult to conclusively attribute to possible underlying autonomic issues or something else (like the bradycardia).

I have balance problems, particularly on my left side. I also have general muscle clumsiness where I sometimes overshoot and bang into things.

I didn’t get full hypermobility from ME but there was a significant and noticeable increase in my tendon/ligament flexibility.

 

[frozenborderline]

Hi @jeff_w or others may I ask what minimum symptoms are required for suspected CCI/AAI or Chiari? Since evaluation is very time consuming and possibly expensive would like to know before going down this path.

I do not have POTS/OI. My ME caused bradycardia and a significantly slower breathing rate. Though I do have blood flow issues where I’m not getting good blood flow to extremities and have throbbing pain. This is difficult to conclusively attribute to possible underlying autonomic issues or something else (like the bradycardia).

I have balance problems, particularly on my left side. I also have general muscle clumsiness where I sometimes overshoot and bang into things.

I didn’t get full hypermobility from ME but there was a significant and noticeable increase in my tendon/ligament flexibility.

Symptoms can contribute to the diagnosis but there are no necessary symptoms to have it. The only thing to do for diagnosis is to get the required imaging and send to a cci/aai literate neurosurgeon

 

[Inara]

I wondered: could a virus enter the vagus nerve more easily if the brain stem were compressed?

Interesting question.

What was shown in experiments with mice lately is that toxins from the stomach can wander via the vagus nerve into the brain, which led to Parkinson's. I think viruses can wander, too, e.g. Varicella Zoster.
(I definitely see some vagus nerve-virus-thing in my family.)

I'm just speculating now, and it's just one angle due to my restricted knowledge - inflammation as well as virus infection lead to endoplasmic reticulum stress, which can lead e.g. to apoptosis (cells die), which may lead to structural changes. If there is increased ER stress, are cells more susceptible to infections, e.g. by viruses? And/Or, if there is any disruption in ER stress cleavage so that the system works a bit less effective, could the susceptibility to other ER stress factors (like infections, nutrient deprivation/fasting, temperature etc.) increase? There are some feedback loops in ER stress and calcium signaling (which plays a role in ER stress); what if something goes wrong and at least one of these feedback loops leads to a "build-up" so that the system can't work properly anymore? (There are actually indications something like this may underlie Alzheimer's, Parkinson's and ALS, amongst others.)

 

[Daffodil]

hi all. just wanted to give a quick update. as I posted before, dr. gilete said I might be a candidate for C0-T1 fusion but requested a DMX and another X-ray. the only one with DMX capability in the area is 1 chiropractor and I just got back from his office.

Turns out this man is an outstanding doctor who, from the articles on his wall, seems to specialize in cervical instability and resulting issues. After 26 yrs of illness and after visiting various prominent doctors, (some Harvard educated), I have a very hard time trusting medical professionals when they say they can help me.

However, this man was so convincing, seemed so sure and had to many years' experience, I decided to give him a chance. He did not want me to have a DMX yet due to high radiation...instead he wanted to do 3 x-rays. I finally agreed. When they were done, he took a long time to explain them to me.

I could clearly see that my neck, for lack of a better term, is all fked up lol It doesn't even curve the right way!He showed me where blood flow and/or spinal fluid could have flow problems. He said the misalignment in the neck, by the looks of it, seems to have been present for 20 - 25 yrs and there was obvious sign of neck trauma.

He was mindful that I am now poor and skeptical so he said he would like to try AO instrumentation and if, after a few sessions I do not feel that it is helping, he will take the money I spent and put it towards the cost of a DMX.

By this time, the repeated movement of my neck, coupled with the medical talk, resulted in severe brain fog and feeling of head swelling

I let him do an AO "adjustment"... I hardly felt it but I did notice a little difference afterwards. I cannot rule out placebo effect because my desire to feel better is just so strong. He put a soft collar on my neck to be used during travelling. I am to return in 1 week.

Turns out the upright MRI's I had in MD were horribly done and, according to the chiropractor, not useful for diagnostic purposes. Indeed, I had noticed how blurry they were too but I thought maybe that is how they are supposed to be. He said they are garbage and I should have been sedated if I could not sit still (my head kept moving a little, almost like a tremor). I am going to complain because I paid a lot of money to fly there and do them.

Thanks for reading

xo

 

[frozenborderline]

hi all. just wanted to give a quick update. as I posted before, dr. gilete said I might be a candidate for C0-T1 fusion but requested a DMX and another X-ray. the only one with DMX capability in the area is 1 chiropractor and I just got back from his office.

Turns out this man is an outstanding doctor who, from the articles on his wall, seems to specialize in cervical instability and resulting issues. After 26 yrs of illness and after visiting various prominent doctors, (some Harvard educated), I have a very hard time trusting medical professionals when they say they can help me.

However, this man was so convincing, seemed so sure and had to many years' experience, I decided to give him a chance. He did not want me to have a DMX yet due to high radiation...instead he wanted to do 3 x-rays. I finally agreed. When they were done, he took a long time to explain them to me.

I could clearly see that my neck, for lack of a better term, is all fked up lol It doesn't even curve the right way!He showed me where blood flow and/or spinal fluid could have flow problems. He said the misalignment in the neck, by the looks of it, seems to have been present for 20 - 25 yrs and there was obvious sign of neck trauma.

He was mindful that I am now poor and skeptical so he said he would like to try AO instrumentation and if, after a few sessions I do not feel that it is helping, he will take the money I spent and put it towards the cost of a DMX.

By this time, the repeated movement of my neck, coupled with the medical talk, resulted in severe brain fog and feeling of head swelling

I let him do an AO "adjustment"... I hardly felt it but I did notice a little difference afterwards. I cannot rule out placebo effect because my desire to feel better is just so strong. He put a soft collar on my neck to be used during travelling. I am to return in 1 week.

Turns out the upright MRI's I had in MD were horribly done and, according to the chiropractor, not useful for diagnostic purposes. Indeed, I had noticed how blurry they were too but I thought maybe that is how they are supposed to be. He said they are garbage and I should have been sedated if I could not sit still (my head kept moving a little, almost like a tremor). I am going to complain because I paid a lot of money to fly there and do them.

Thanks for reading

xo

I would be very careful with chiropractors and cci!

 

[Daffodil]

I would be very careful with chiropractors and cci!

it says blog has been removed?

 

[frozenborderline]

it says blog has been removed?

Blog?

 

[Daffodil]

Blog?

oops...i clicked on the url under your post. it is no longer small font in this new format so i thought it was part of your message:
https://hypostition.blogspot.com

 

[Daffodil]

Hi @jeff_w or others may I ask what minimum symptoms are required for suspected CCI/AAI or Chiari? Since evaluation is very time consuming and possibly expensive would like to know before going down this path.

I do not have POTS/OI. My ME caused bradycardia and a significantly slower breathing rate. Though I do have blood flow issues where I’m not getting good blood flow to extremities and have throbbing pain. This is difficult to conclusively attribute to possible underlying autonomic issues or something else (like the bradycardia).

I have balance problems, particularly on my left side. I also have general muscle clumsiness where I sometimes overshoot and bang into things.

I didn’t get full hypermobility from ME but there was a significant and noticeable increase in my tendon/ligament flexibility.

i barely have that...no pain, nothing. just ME/CFS...but apparently i have a severe case of CCI according to expertss.

 

[leokitten]

i barely have that...no pain, nothing. just ME/CFS...but apparently i have a severe case of CCI according to expertss.

Did you do an upright or supine MRI? To me it does make more sense for it to be upright to increase the likelihood it will be found or not, but reading that Dr Bolognese wants supine now makes me wonder why the change other than to help patients with insurance approval over diagnostic certainty.

 

[leokitten]

For those who got their MRIs what were the ICD-10 diagnosis codes they put on the order?

 

[Daffodil]

Did you do an upright or supine MRI? To me it does make more sense for it to be upright to increase the likelihood it will be found or not, but reading that Dr Bolognese wants supine now makes me wonder why the change other than to help patients with insurance approval over diagnostic certainty.

hi leo. i went to Maryland for an upright MRI and sent it to Dr. Gilete. Since the quality of the images was so bad, I will ask my local doc for a supine MRI and then send the whole lot to Dr. Bolognese for a second opinion.

 

[Daffodil]

this is a normal neck (left) compared to my neck (right):

 

[talkinghead]

Is it possible to have CCI without having PEM? Physicaly I'm mostly ok, but I have variety of neurological symptoms, like sensitivity to light, vision issues, really bad sensory input gating (I feel like dying in stores), I mostly can't think straight (my brain litteraly gets stuck and feels like it's on fire), problems with time perception, tinnitus and stuff like that. I also have head pressure, headaches, stiff neck and pain in upper back. My arms go randomly numb, and when I'm walking for more than half an hour, muscles in my neck, upper back and arms start to get really tense and painfull. I have 1 bad disc in my neck according to standard MRI, and multiple down the line.. I don't have standard neck curvature, simiralrly to @Daffodil . I also have some hypermobility and pectum excavatum, which could mean undiagnosed EDS or some other soft tissue problem, that's why I'm thinking I could have CCI.

I'm not sure if I should get tested, because I won't get insurance coverage where I live and it's not cheap. Do you think it's worthwile to test this if I don't have classic CFS symptoms like PEM and physicaly can function? I've had back problems almost my whole life, but the neurological stuff started after EBV and hepatitis vaccination..

 

[talkinghead]

Also, about the problem with "rushing surgery" by these few doctors.. Isn't a good test if you are a good candidate for the surgery the halo vest @jeff_w was wearing? IIRC it helped him pretty significantly, so couldn't just wearing this for a few weeks help people decide if they want to go for the surgery?

 

[frozenborderline]

Also, about the problem with "rushing surgery" by these few doctors.. Isn't a good test if you are a good candidate for the surgery the halo vest @jeff_w was wearing? IIRC it helped him pretty significantly, so couldn't just wearing this for a few weeks help people decide if they want to go for the surgery?

I think that Jeff May have been an exceptional case. He could not leave the hospital without a treatment and the collars weren’t adequate. These neurosurgeons generally don’t use a halo. I’m not sure why but it may be because it weakens the muscles and ligaments so much more that it makes recovery harder. You could probably find a dodgy neuro that would put a halo on for cash , I don’t know. But it seems difficukt and perhaps not feasible

 

[frozenborderline]

Is it possible to have CCI without having PEM? Physicaly I'm mostly ok, but I have variety of neurological symptoms, like sensitivity to light, vision issues, really bad sensory input gating (I feel like dying in stores), I mostly can't think straight (my brain litteraly gets stuck and feels like it's on fire), problems with time perception, tinnitus and stuff like tha

Yes I believe probably the majority of people with cci have not had PEM and CFS. A lot of people with EDS seem to have this and not always have those crossover symptoms. If you don’t have PEM that would make non surgical management and recovery form surgery even easier. Much of the advice for treatment is based around ppl who don’t have PEM and can focus on strengthening their neck muscles to compensate

 

[roller]

wondering, why a reduced curve would cause such bad problems ?
what exactly is the harm done by a reduced curve ?

@Daffodil
what is your neck-MRI supposed to look after surgery?
will it then look like the left MRI ? be fusioned to have the LEFT curve ?

are there links to MRI pics from ppl before/after surgery ?

 

[talkinghead]

@roller I don't think the lack of curvature is causing these problems. Lack of curvature in my layman opinion simply means that you are more likely to have CCI because there is a problem with your soft tissue (which can cause both cci and curvature/discs problems). Surgery for CCI won't change the curvature. But again, I'm not a doctor and this is just my understanding.

@debored13 Thanks for your response, I guess I have to get tested.