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

[jeff_w]

Hey everyone. Wanted to post an update. I got a flexion extension mri and it looks like craniocervical instability is my issue as well. Will be talking to Bolognese in the coming weeks. @jeff_w I know i've never spoken to you, but would you be open to a skype call? I'm freaking out about this a bit.

Hi @bball222

Congratulations on figuring this out. You're the 6th person from PR (7th including myself) that has now been diagnosed with CCI this since this thread began.

I'd be glad to Skype. Shoot me a PM, and I'll give you my info.

 

[Dakota15]

Thanks for being a pioneer @jeff_w ! The PR Community is grateful for sharing your experiences that hopefully has led to an improvement of quality of life for others.

If you don't mind me asking, and feel free to PM me, but have the 6 you indicated elected to have the same surgery as you?

 

[Dakota15]

Hey @jeff_w - just wanted to check-in and see how you're doing. I'm sure many on here and that have been involved in this thread would love to hear an update if you'd be so kind and willing.

Hope all is well - Dakota.

 

[surfergirl]

just stumbled on this thread as i cross referenced ME and chiari - i recently had a regular old supine mri for neck pain and the report noted chiari I. i wonder what it would look like in the real, upright mri?! my ME specialist took note immediately and said this could be the cause of everything. i had no symptoms until 4 years ago and then a minor slip and fall accident. he said people with chiari can be asymptomatic and then have disproportionate symptoms after trauma/accidents. in the last 4 years i went from healthy athlete to housebound and on disability, severe fatigue, PEM, POTS, cognitive issues, high fibromyalgia pain, neuropathy, etc. when i read about chiari i match the symptomology exactly, right down to trouble swallowing which is weird and getting problematic.

this is all new information so i'm slightly freaked/grossed out but now also becoming excited that perhaps it IS a mechanical thing that can be fixed (i've been so jealous of friend's broken bones and other fixable issues). i am not super excited about anyone messing with my brain and spine but then again... i don't have much to lose at this point as my illness is still progressing. i haven't yet seen a specialist so have no idea if CCI is involved also, but i am glad to be moving out of fear and into curiosity via research and knowledge. thank you SO much @jeff_w for creating this thread. i am thrilled for your recovery, it is priceless! i currently live in hawaii, where medical is totally crappy, so need to look at the mainland for specialists in either the pacific northwest or texas where i have family. actually nevermind... wherever the best people are, i shall go!!

 

[Mary]

bump

 

[Yuno]

I have also just come upon this thread and having spine issues (stenosis and some signs of ICCI am wondering and would be very interested to know @bombsh3ll, @ErdemX, @tornerose, @bball222 and @NaxavisDragonLady how you are doing, now that you have also been diagnosed with CCI? Did anyone else go for surgery like Jeff did or are there any alternative treatments? Would be great to know your angle on this to add to the overall picture...

 

[wigglethemouse]

@JenB Jen Brea wrote about this topic today. Here is the link.
A new diagnosis to add to the list - I have craniocervical and atlantoaxial instability

 

[Rlman]

@JenB Jen Brea wrote about this topic today. Here is the link.
A new diagnosis to add to the list - I have craniocervical and atlantoaxial instability

Thanks for sharing this @wigglethemouse. It mentions that @jeff_w has a website! www.mechanicalbasis.org.

 

[Gingergrrl]

Thanks for sharing this @wigglethemouse. It mentions that @jeff_w has a website! www.mechanicalbasis.org.

Absolutely amazing update from Jen Brea and I am so thrilled that she has discovered that she (most likely) has CCI at the core of her symptoms and will have surgery. (To clarify, I am not thrilled that she will have to endure another surgery vs. that she has discovered something that could lead to a shot at remission in the long-term).

I am even more thrilled that she made this discovery b/c of what Jeff shared and am honored to call him a close friend. For those of you who have not seen his website yet www.MEchanicalbasis.org, it is excellent and well worth checking out. I was able to visit him in the hospital (while he was fighting to get a Neuro to take his case seriously ) and the results of his surgery are nothing short of a miracle to me (I hope you don't mind me saying that, Jeff)!

I believe that we all came to an ME/CFS diagnosis from different triggers, and that for some of us, it is absolutely 100% the correct diagnosis. For some, it is one of many co-morbid diagnoses (those who have ME/CFS, POTS, MCAS, EDS, and many of the overlapping diagnoses), and for others like myself, it ultimately turned out to be an incorrect diagnosis (to the best of my knowledge without a bio-marker of course).

I do not have CCI or EDS but I had POTS, MCAS, Hashimoto's, toxic mold exposure, and now what we believe to be an atypical form of LEMS. All of this is in remission for me at the moment with treatment. But had I not kept digging deeper, I would have been left where I was in 2013 and half of 2014 from multiple doctors with, "You have CFS and there is no treatment".

I guess my point, that I feel very passionate about, is that if you suspect that you have CCI or POTS or LEMS or any diagnosis that you feel matches your situation, do not give up your search. If I can maintain this remission and return to my career in social work, it will be my life's mission to help those with ME/CFS and all of these other obscure illnesses that the average doctor will never learn about in medical school.

 

[Strawberry]

@Gingergrrl I do still think of you often and your car accident that preceded all of this. I do hope you don't write it off 100% yet... But hoping you are correct also!

Jeff's story was the reason I went to see Dr Kaufman, because his symptoms (and also Justy's) matched my own more than most people here. Even though I am mild, so I doubt I need surgery, but hoping this will lead to treatment options. I will definitely post here once I have the tests ran.

Thank you @wigglethemouse for posting Jen's blog. Both were a good read. And inspiring!

 

[Gingergrrl]

@Gingergrrl I do still think of you often and your car accident that preceded all of this. I do hope you don't write it off 100% yet... But hoping you are correct also!

The reason that I do not believe that CCI is relevant in my case is b/c I am in remission from IVIG and Rituximab and I had eleven different autoantibodies (at the point that we stopped looking and probably more). I tried a cervical collar at different points after my car accident (in 2006) but it was never of any benefit to me.

I do have fairly constant neck pain but my right triceps tendon/arm was injured by Levaquin in 2010 and my shoulder and neck had to severely overcompensate for my arm. I am now doing PT and (Rehab) Pilates so I often trigger the neck pain BUT in my case, there is no connection between the neck pain and POTS or other symptoms.

I had severe POTS with HR in the 160's and 170's on a daily basis and this is now in complete remission (but I still have the neck pain). My PT said that I have cervical radiculopathy, cervical stenosis, and some arthritic changes in my neck but I do not have CCI or EDS (which matches my research and experience).

Sorry to take this off-track but wanted to reply to @Strawberry in case any of this is useful (and I hope you are doing well, Strawberry )!

 

[Murph]

I have never once looked at this thread before, perhaps because the word Chiari was unfamiliar to me. But I've learned a lot!

Kudos to Jeff for his perseverance. I'm very pleased you got better.

Naturally I just spent about a minute trying to push my head this way and that to see if it made me feel any different but I don't think I have any of the symptoms!

I remain open-minded on the question of whether this combination of diagnosis and treatment will be useful to other me/cfs patients.

If the results Jeff obtained are generalisable to other me/cfs patients then perhaps brain stem inflammation (whether due to pressure or virus or *other causes*) could be a common factor in various causes of me/cfs? Has Jarred Younger seen all this I wonder?

 

[jeff_w]

Hi, Everyone! I have a website about my complete recovery from ME after a halo and fusion surgery for CCI. There's a page about getting evaluated for CCI and a page about the neurosurgeons capable of diagnosing/treating it. I also get into the timeline of my illness and being trapped in the hospital under the "care" of hostile neurosurgeons.

www.MEchanicalbasis.org

 

[lafarfelue]

I also get into the timeline of my illness and being trapped in the hospital under the "care" of hostile neurosurgeons.

@jeff_w , thanks so much for creating your website and making everything so clear. I read your full story and experience earlier today and wow. Just... wow. Well done for persevering as you did through such torment. I am SO sorry you experienced such poor treatment across the board. (As an aside, I'd be very curious to know how that director moved forwards with his colleagues who denied you treatment for so long ugh)

I recently went to see the Dr I've received so far good care under for ME/CFS and POTS, but they didn't want to even broach the concept of EDS (or other collagen based dysfunction) at all. I spent a lot of money to be told 'oh that's too experimental'. Silly me for getting my hopes up, hey

BUT! To take a leaf out of your book, I'm going to persist! I'll be visiting a recommended osteopath next and then hopefully I can get my GP to refer me to someone who will run the correct MRI's to assess for CCI.

Congratulations and thanks again, you've given me some hope to hold on to.

 

[sb4]

Found this interesting in @jeff_w blog "I also began having difficulty breathing. It seemed that my body was somehow “forgetting” to breathe.". I have also experienced this sensation when at my worst. I could go fairly easily for almost a minute without breathing in until I forced it. Very strange indeed.

I have tried now 5 times in both letter and face to face dialogue to get an upright MRI with flexion and extension. The answer is always the same, we don't think it's that (based on nothing) and we couldn't order that test anyway (an upright MRI???). Doesn't matter if it's neurology, CFS """"specialists""""", or GP.

For those in the UK it seems that we can get an upright MRI with flexion and extention for £1100 at a few places around the country. I am still putting off saving up that kind of money as I am unsure if CCI is my problem. I do have POTS, EDS runs in the family, but I lack other symptoms as described by people with CCI and don't really notice any difference in symptoms regardless of my head position.

Anyway Jeff, great blog!

 

[MEPatient345]

Great blog @jeff_w, and just.. crazy crazy story. You have been so mistreated, it’s unreal.

Jens symptoms sound so similar, I hope she benefits as much as you did. Has she said what doctor she chose?

I have not made any progress on this for this whole year. I still want to go to Munich to get the MRIs but it’s so hard to travel and my caregiver is also sick. Eventually we will go..

 

[Dakota15]

Great to hear from you @jeff_w! So happy for your recovery and progress - the website you created is great!

Definitely would be curious to hear the progress of the 6 others diagnosed on PR according to Jen's article.

 

[Marley101]

Hi @jeff_w I’m usually a lurker but I had to chime in to say that your blog connected some dots for me. I have EDS, CFS, POTS & MCAS honestly never thought they were linked until I read your story. It spurred me on to make an appointment today with Dr Tinkle, who will hopefully connect the dots for me as well.

I’m not as severe as you were but my chronic migraines & utter exhaustion are unbearable.

I just wanted to say a mega “thank you” for your story & insight, I am very grateful!

 

[Mel9]

Thanks Jeff for doing this wonderful research which will benefit so many pwme.

Does anyone know if we can get standing MRI done in Australia?

 

[JenB]

Absolutely amazing update from Jen Brea and I am so thrilled that she has discovered that she (most likely) has CCI at the core of her symptoms and will have surgery.

I'm not quite ready to say that. I'm sure Jeff is but I remain agnostic until a) seeing my personal outcome and b) doing some real research on the prevalence of this diagnosis in our community, perhaps with some pre-post testing.

If the results Jeff obtained are generalisable to other me/cfs patients then perhaps brain stem inflammation (whether due to pressure or virus or *other causes*) could be a common factor in various causes of me/cfs? Has Jarred Younger seen all this I wonder?

This is a very good question/hypothesis.

Found this interesting in @jeff_w blog "I also began having difficulty breathing. It seemed that my body was somehow “forgetting” to breathe.". I have also experienced this sensation when at my worst. I could go fairly easily for almost a minute without breathing in until I forced it. Very strange indeed.

Prior to thyroid surgery (when these symptoms became severe and omnipresent), I'd have this weird thing that would happen just a few times a year would I would be "frozen" (couldn't move or speak or breath for just a few seconds (like 3)) and then all of the sudden I'd "reboot" and everything would be fine. 100% this was CCI/AAI, just in very mild form. It would only happen when laying down. The forgetting to breathe thing will happen now within about 60 seconds of taking off my cervical collar. In my case, it's cranial settling/compression. If you traction my head (pull it up) the problem goes away. In lieu of an expensive MRI, you might try to go to someone expert in doing manual traction to see how you feel or trialling a cervical collar (obviously discuss any potential new interventions with your doctor, etc). If these make you feel better, I'd prioritize that MRI.