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

[Jaker]

I thought I'd ask here. Are there any doctors in the UK worth contacting about possible craniocervical instability or similar conditions?

I came here with about the same question, either in the UK, Netherlands, Germany, or Europe in general?
I'm scheduled for a regular MRI of my neck region in a local hospital next week, but as Jeff explains, I shouldn't get my hopes up of a regular radiologist finding anything in particular.

 

[kewia]

I came here with about the same question, either in the UK, Netherlands, Germany, or Europe in general?

In case it wasn't a rhetoric question:
Diagnosing:

Spoiler

https://www.medserena.co.uk/contact...mEpNZDkPr1Rqv5aLBwt-fSLp4xUBfFMRoC-CUQAvD_BwE
https://www.mrt-hannover.de/

Treatment:

Spoiler

https://drgilete.com/

Just to say, I didn't attend anyone in the mentioned spoilers, so I can't argue about their quality and validity that much, but heard many good things from other people here and elsewhere.

 

[winterschlaf]

I came here with about the same question, either in the UK, Netherlands, Germany, or Europe in general?
I'm scheduled for a regular MRI of my neck region in a local hospital next week, but as Jeff explains, I shouldn't get my hopes up of a regular radiologist finding anything in particular.

Hi @Replenished and @Jaker

Jeff's advice is sound and the Tl;Dr: / ultimate solution advice @kewia gave is correct.

There are some more detailed qualifications, resources and advice available in answer to your questions via the Facebook groups made by Jen Brea for pwME exploring spinal/cranial issues to exchange information:

https://m.facebook.com/groups/1353765701467793/

I would recommend highly applying to join 'ME/CFS+ Brain and Spine' (linked above) and checking out the resources and discussions of patient experiences there, including by those of us based in the UK and Europe.

There are step by step guides on obtaining diagnosis and treatment; especially useful is a document listing all ME +/ Hypermobility Spectrum Disorder literate physicians in your location, compiled and reviewed by their patients, which becomes accessible post sign-up.

From there you can also apply to join subgroups such as 'ME/CFS+ Surgery, Recovery and Rehabilitation' if you wish, where patient experiences and advice regarding surgery are exchanged (linked below), and several others where management of possible comorbidities are discussed, if these topics are or become relevant / useful.

https://m.facebook.com/groups/474861353358898/

Very best of luck!
W

 

[valentinelynx]

Rather than starting a new thread, I thought I'd ask here. Are there any doctors in the UK worth contacting about possible craniocervical instability or similar conditions? It's yet another thing I consider as possibly causing my symptoms, since my symptoms developed soon after developing throat/neck swallowing issues some years ago.

I don't recall names right now, but there are a very few UK doctors whose names come up as potentially helpful for CCI and related conditions. There is a UK-based Facebook CCI support group where you might have better luck finding local resources: Cranial Cervical Instability • The Brain To Spine Telephone Line • It's a closed group, so you need to request to be admitted. I hope you find the answers you need!

 

[Anncomingtogrips]

Many thanks for your replies.
1.) Did you also get tested for viral titers?
1.a.) If yes, did they decrease during antiviral therapy or didn't they change at all?
2.) How long did you do anti-viral therapy?

Keep on improving.
Best wishes,

Kewia.

Hey - sorry for the delay in replying. Yes - I had been on antiviral therapy for a year and a half. I. was tested every 3-6 months - the measures never got better. I'm waiting a little longer before getting post surgery measures.

 

[Jaker]

In case it wasn't a rhetoric question:

No, it wasn't, but I do admit I should have tried a bit harder to find the info, because it's out there. Sorry about that. Also for my late reply (didn't get notifications, will check settings) and thanks for the links and info (@winterschaf).

 

[Anncomingtogrips]

I wanted to share a link to a description of my experience with CFS/ME and the surgery for CCI. I do this with some hesitation, knowing it won't provide an answer to some people who, like me, are eagerly searching for a way to address all of these symptoms, and yet don't have the structural issue that could provide relief. We have so many journeys and so many paths. Snapshots of a Chronic Illness (and if the embedded link doesn't work: https://medium.com/@mccollatsxphw/snapshots-of-a-chronic-illness-56073f7d15c6). I don't mention Jeff Wood by name but I've worked from his description of how CCI addresses these viral conditions. https://www.mechanicalbasis.org/. I hope solutions are available to all of us for these conditions.

 

[SWAlexander]

Snapshots of a Chronic Illness

Thank you for writing and linking to "Snapshots of a Chronic Illness" and Craniocervical Fusion.
Your account triggered a memory and awareness I have, shrinking 9 cm in 4 years. A very steep curving inward, in the L-section, visible on an X-Ray while laying on the side. The orthopedic declared it as "normal" for aging females. He did not explain why. Then there is a feeling of my neck getting shorter.
I´m very happy about your recovery.
May I post a link to your writing on Twitter?

 

[lenora]

Thanks @Anncomingtogrips......Yes, Susan's Sontag's description of illness is like entering a vast kingdom, or as I like to put it: A mansion with many rooms and we don't know what lies for us in each. We're wary, but have very little control over much of anything. It can be scary and there are so many rooms!

I've had this illness since the early days of AIDS (and of course we were immediately given the back seat of the bus), but I have learned this. Once we enter each room there is no going back to the one before it. We constantly have to readjust our thinking (our "feelers" perhaps?) and re-learn something new..

Two really wonderful things happened to me: 1. My husband who has no end of kindness; and 2., My neurologist who follows suit. I am most fortunate, and I realize it; and 3,. My friends who understand as much as possible about my illnesses and have been there for me in so many ways. Now I'm down to just two, most have passed on one way or the other, and death is no foreigner to me....my whole life, really. Like my family and my friends, it's another room that is presently unknown to me.

Like you I've had surgeries, different than today's I'm sure and now the illnesses have also been added to by others. I'm old, but then every old person has problems...don't they? I understand. Many are just beginning the journey and it's difficult.

Still, I've adjusted to the many rooms I've entered and though my world is smaller, my outlook is enormous. I no longer seek cures, it is what it is....but that doesn't mean I've given up on life. No, quite the contrary....we all live and we all die. I've had the burden of suffering great pain along with this illness, and yet still adjust to living with it.

35 years ago I never thought about getting old b/c the diagnoses were scary and I assumed my life would be short. From the beginning I thought I would die of AIDS b/c I was so ill and had a blood transfusion during surgery. That was immediately followed by recovering from two separate viruses but my four leaf clover had me on a treadmill of being passed from the kindest of young doctors until I found the one who could help. Oddly enough, if he hadn't volunteered in Central America he may never have known anything about this illness, as so many don't.

So now I'm 75 and my list is long like Santa's, but mine are serious illnesses. The early ones are contained in the very back and yes, I'm still a part of the joy of life. My children visit, my grandchildren are in college or in the teen years and my husband will turn 78 in the coming month or so. I'm joyous about what my life has meant, but more than anything the things I've learned and the person I've become.

I'm also conflicted spiritually....and I don't look at it as a bad thing at all. I have it, and that's all that matters....hopefully I'll find home within what I read and accept.

We're all different people, different personalities and some experience more anger than others, while some of us are capable of much giving of ourselves while accepting the sadness that dwells within. My world is smaller now....and as I look back on the past number of years, I didn't accomplish what I thought I would, but my accomplishments have been a giving of myself to others. I love the feeling and I can leave yesterday behind. It's simply a part of what has been my life.

Thanks for your input, and I sincerely hope you're surgery is highly successful. I can't imagine growing taller instead of shorter it must be a nice feeling to experience. I began life tall and have entered the world of petite sizes. Wherever we are on our journey, remember that others are just as bad or even worse off than we are. I've been fortunate enough to know quite a few of them. We all learn something from each other....we share, we're sad and we laugh. I wish you well and thanks for the link. Feel better; walk taller. Yours, Lenora

 

[Husband of]

I wanted to share a link to a description of my experience with CFS/ME and the surgery for CCI. I do this with some hesitation, knowing it won't provide an answer to some people who, like me, are eagerly searching for a way to address all of these symptoms, and yet don't have the structural issue that could provide relief. We have so many journeys and so many paths. Snapshots of a Chronic Illness (and if the embedded link doesn't work: https://medium.com/@mccollatsxphw/snapshots-of-a-chronic-illness-56073f7d15c6). I don't mention Jeff Wood by name but I've worked from his description of how CCI addresses these viral conditions. https://www.mechanicalbasis.org/. I hope solutions are available to all of us for these conditions.

Thanks for caring about the wellbeing of strangers enough to share your story. Can I ask, how did your illness develop, in terms of symptom onset?

I know that even with the same cause different peoples onsets can look different, but at the same time there might be some commonalities amongst some people when they have a common cause.

My wife became suddenly Ill. Yes the symptoms changed over time, so it's not clear whether she first had a virus and then MECFS or if it's all part of the same thing and that symptoms simply change over time when you are sick for ages (perhaps depending on what you do during that time). That 'same thing' could be a virus, or something else (CCI? Who knows).

Some of the symptoms she had on day one are the same as she has now - eg how long she could walk for before puttering out and feeling poisoned (or possibly that was worse in the first month). She had low grade fever for a month that seems to not be there now (I think). And we noticed delayed worsening of symptoms from around month three although it is likely it was just our ability to recognise it that had changed. The cognitive symptoms have changed over time. They were the worst in months three to nine.

 

[ChristineAndCats]

Hi, I'm strongly suspecting I have CCI or mild chiari as the cause of my illness, but feeling super overwhelmed with trying to get evaluated and treated for this, as my cognitive function has suffered greatly in the past couple of years, and being in PEM makes me anxious AF.

I've been hypermobile since forever, and know I have hEDS. My ME/CFS started in 2015 with two roughly concurrent events:
1. My first ever visits to a generalist chiropractor, who "adjusted" my neck rather aggressively. Several times. I remember immediately feeling very woozy/off, and developed a lot of neck pain, muscle spasms, occipital neuralgia, and frequent stabbing headaches (which fortunately subsided after several months). Basically, I think he screwed up my neck big time.
2. A mild viral illness of some sort triggered spells of neurocognitive symptoms so significant I was sure I had encephalitis. I had confusion, blurry vision, hoarseness, incoordination, vertigo, raging tinnitus that seemed to come and go in days or weeks-long waves.

A year after this all started, I began having right frontal headaches and right trigeminal neuralgia. I was diagnosed with chronic migraines, tried everything under the sun for that, and just kept getting worse and worse.

One of the things I tried was seeing a specialist upper cervical chiropractor who uses the "Blair technique." His manipulations would often aggravate my symptoms, and the adjustments would never stick. I'd be all wonky again by the time I walked out the door. I also noticed that the blurry vision sometimes seems to be positional.

I had to quit work and go on disability 18 months ago and I'm just getting worse and worse. When I figured out a couple of months ago that I have ME, I managed to get into the Bateman Horne Center, and they diagnosed me with fairly severe POTS based on a NASA lean test last week.

Increasing salt and fluid intake the past few days has led to feeling like my brain is too big for my skull, the ringing and light sensitivity are insane. My vision has been super blurry. My guts are stopped. And I feel like I'm fighting catatonia or locked-in syndrome. I feel frozen in my body. Sometimes I realize I'm not breathing much. I feel like I'm dying. I kinda want to die.

I'm enlisting my mom's help in starting the process of being worked up for chiari or CCI, but with as sick as I am, I still feel immensely anxious and overwhelmed. I'm sure there's a structural cause in my case, I'm desperate for help, but I feel almost too sick to pursue it.

I guess I just need encouragement and any advice.

 

[scisolver]

I did the upright dynamic MRI. It came out normal, but I didn't take it to any surgeons specialized in this and I don't exactly trust them.

There is a person who has a lot of videos on EDS and ME/CFS and got some of these surgeries, which I really hoped she wouldn't get. It looks like it didn't help her at all. Some of her videos talk about her surgery experience.

https://www.youtube.com/c/GonetoPOTS

I think what I'm dealing with is this neuro-immune where it creates RNA from all sorts of viruses without activating them and fragments the mitochondria which kills the energy. I forget the name of the researcher which is working on that. He focuses a lot on HHV6, but says it isn't activated and other viruses play a role too. I have anti-vinculin antibodies which are causing my digestive illness (diarrhea when I eat fat and also reflux) and dry eyes which goes with the digestion. Also dry skin, and crusty scalp and feet goes with the small fiber nephropathy in digestive system. I was postive on anti-vinculin IBS Smart test. Score 2.7. I also have tinnitus, face tingling at times. The antibodies seem to go after the trigeminal and dorsal root ganglia. So, I have jaw muscle / TMD pain too.

Immunoglobulin helps some people, but I got aseptic meningitis syndrome. It is hard to get too unless you have an antibody test and diagnosis that covers it. Ampligen has a history of working for many people as long as they stay on it amazing results, but there was a whole controversy years back where it was voted down to be given to us. It doesn't work for everyone and some parents sold their house so they could give it to their daughter and it didn't work.

There is an ME/CFS research server where a lot of talk about various new treatments and supplements we try. Myself and another guy at the moment are considering trying vitamin C injections.

We saw this video of this woman who had EDS who said it worked well for her. She was bed bound. Normally we are looking at more advanced and unusual things than vitamin C injections.

 

[sb4]

What are the advantages to injected Vit C vs Oral?

 

[scisolver]

What are the advantages to injected Vit C vs Oral?

You can't absorb much orally, though you can absorb more in liposomal form, but I can't because of my small fiber neuropathy from anti-vinculin. has trouble with fats, including lecithin.

The idea is to use it as an immunomodular. Perhaps lowering il-2 and raising interferon type 1. Ampligen raises interferon type 1.

 

[Tiffyshea]

There is an ME/CFS research server where a lot of talk about various new treatments and supplements we try. Myself and another guy at the moment are considering trying vitamin C injections.

We saw this video of this woman who had EDS who said it worked well for her. She was bed bound. Normally we are looking at more advanced and unusual things than vitamin C injections.

I'm considering IM Vitamin C injections as well.
Where do you plan to get the injections? I'm super interested to know... I found this place but am not sure as to how pure it is, as I thought you needed a script for this stuff. https://www.vitastir.com/product/vitamin-c-injections/

Also, here's another woman who has reversed all of her symptoms with it:

 

[scisolver]

Yeah I know her and the site in the comments. Ascor is the fda approved prescription. Otherwise do ampules but need filter and hypodermic needles then https://vitaminb12direct.com/product/injection-vitamin-c-500mg-50-amps/
https://www.medonthego.com/Filter-N...15-Inch-305201-Thin-Wall-Box100_p_130608.html
I have link to other syringe / hypodermic but hard to list now. I'm just taking 250mg 2x daily oral. I think higher caused insomnia.

They have EDS though and we don't. I know a guy who said he is going to try it.

 

[Nord Wolf]

I've been reading a lot about CCI and all the other structural issues of that region. Jeff Wood mentioned many years ago the use of an upright MRI with flexion-extension to gain the proper images for trained neurosurgeons to diagnose. However, I contacted the local MRI facility I've used before about this. The replied:

"To our knowledge, Upright MRIs our being phased out throughout the country. The only one we knew of near New England was in Albany and that was shut down about 5 years ago. There may still be one in NYC."

Does anyone know if other imagine options have been discovered to detect CCI?

There are some more detailed qualifications, resources and advice available in answer to your questions via the Facebook groups made by Jen Brea for pwME exploring spinal/cranial issues to exchange information:

https://m.facebook.com/groups/1353765701467793/

I would recommend highly applying to join 'ME/CFS+ Brain and Spine' (linked above) and checking out the resources and discussions of patient experiences there, including by those of us based in the UK and Europe.

Is this information found on any other platform beyond Facebook? I'm not part of Facebook.

 

[lenora]

Hi @Nord Wolf.....My Arnold-Chiari Malformation (and Syringomyelia) were discovered about the time the MRI was first used. Thus, the only ones available were the ones where you laid down. It was a little by little diagnosis because so little was know about either illness. CCI wasn't even thought of then, so I just happened to be fortunate in both my doctors and the MRI itself. This would have been about 35 years ago and I just came from seeing a new neurologist (my neurologist for all those years recently died) and she wants me to have another MRI just to track carotid problems and a few other things.

I'll do that, but since I have to see the cardiologist next week (I think), I know he'll want tests because I have to have more stents, probably the other carotid, so there is no point in having them done twice.

So what can I suggest that you do? Find the nearest specialist in your area and see what is recommended by him/her. There are new neurologists today and I'm impressed with their knowledge. You're always going to have someone who is difficult, but for the most part I've been fortunate.

Like you, I have a lot of things wrong and I don't want to worry about all of them. Some I can have tests done and forget about for a couple of years....or even more. You have lung issues, so that's your first concern. I don't know if they'd say I have CCI today or not....I can remember when we wondered why Ehler-Danlos was lumped in with us. Always, things change and older members are left to wonder why and I'm sure the newer members are left to wonder why they were put in with us. Today it all makes perfect sense.

I wonder when the MRI's were changed and for what reason? Please let us know if you find out the reason. I'm sorry that you're having so many difficulties....things should be a bit easier, shouldn't they? Yours Lenora

 

[valentinelynx]

I've been reading a lot about CCI and all the other structural issues of that region. Jeff Wood mentioned many years ago the use of an upright MRI with flexion-extension to gain the proper images for trained neurosurgeons to diagnose. However, I contacted the local MRI facility I've used before about this. The replied:

"To our knowledge, Upright MRIs our being phased out throughout the country. The only one we knew of near New England was in Albany and that was shut down about 5 years ago. There may still be one in NYC."

Does anyone know if other imagine options have been discovered to detect CCI?

First of all, while upright MRIs don't have the best resolution and are typically lower resolution than supine MRIs, there are still facilities that offer them. They aren't common, but you can find any near you by Googling "upright MRI near me". Often the facilities use the term "Stand Up MRI" so you can search for that, too. I don't know exactly where you are, but I did a search for "upright MRI New York City" and found Stand-up MRI of Manhattan. As for the letter's reference to Albany, I found a facility in Latham, NY called Pinnacle Open & Upright MRI which appears to be open, not closed 5 years ago!

Having said all that, upright MRI isn't a set-in-stone requirement for diagnosis of CCI. Mine was diagnosed on a standard (1.5T) supine MRI of the cervical spine. Different neurosurgeons have different preferences for imaging, so it's best to ask the neurosurgeon of your choice what he or she prefers before getting imagery done. For example, Dr. Bolognese prefers supine cervical MRIs of at least 1.5T because he finds the low resolution of most upright MRIs to be inadequate. Other neurosurgeons apparently prefer the upright MRI, often including imaging in flexion and extension (bending your head forward and backward) because these show the position of the brainstem under gravity and under strain. Some people's CCI isn't obvious on a supine MRI but is evident on imaging the upright position or with flexion/extension views.

TLDR: it's best to ask the neurosurgeon you are planning to see what type of imaging they would like to see. If you do choose to get imaging before consulting a neurosurgeon, you'd probably do well to get an upright cervical MRI with flexion/extension views. Use a search engine to find "upright" or "stand up" MRI facilities near you. (as I did t get the links in the text above). Call them and ask what the resolution is of their MRI machine and choose the one with the highest number (e.g. 0.6 Tesla is better than 0.3 T, and 1 is even better). Less than 0.6T is probably not worth doing.

 

[Nord Wolf]

@valentinelynx - Excellent advice, thank you for taking the time and energy to respond in depth. I will look into this more thoroughly and see what I can come up with. This is just the initial stage of research. I'm on wait lists with various doctors for first consultations concerning this avenue. I also have a dear friend nearby who was recently diagnosed with mild stenosis in parts of the brain and a Chiari 1 malformation. I'm waiting to hear back on who she saw, what tests she had done, and where she got them done.

And I'm in the far north of Vermont, so anywhere in NY is a pretty huge trip for me in my condition.