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

[Mary]

@debored13 - I've just sent you a PM about splitting off a second thread - please take a look and get back to me - thanks!

 

[Daffodil]

hello. wondering if someone could tell me again which MRI dr. bolognese likes...supine 3T flexion and extension? i cannot remember for sure and not well enough to search thread

thanks

 

[leokitten]

@debored13 - I've just sent you a PM about splitting off a second thread - please take a look and get back to me - thanks!

Please put the link to new thread here if you can, thank you.

 

[leokitten]

Sorry if I missed it somewhere, but did @JenB go to Bolognese for surgery?

 

[jeff_w]

Hi @fredam7

I'm also wondering why this CCI as cause of CFS and surgery to cure for CFS, is being allowed to be pushed as real and accurate and anything contrary is seen as a crime against the board?

If you had read through this thread, you would have found a lot of skeptical posts. The skeptical posts are not moderated. They are allowed to remain on this board. And that is how it should be.

CCI is extremely rare.

The current estimate is that one in 15 people with EDS will develop CCI. You mentioned in your post that you do have EDS.

You wrote to Daffodil:

You have no symptoms (of CCI).

She has many symptoms of CCI. Her posts make it clear.

I have severe head and neck pain , arm and hand weakness , hands go completely dead, neuropathy , when I turn my head I get more confused , constant tinnitus, vertigo, severe headaches , breathing issues etc etc but I also have eds, I also have been very inactive , I also might have issues with the carotid arteries .

I understand this is a living hell. I've been there.

Every single symptom you listed can originate from the neck, and that is all the more likely given that you have EDS. The severe head and neck pain, that you have radiating weakness and numbness, is a classic sign of cervical radiculopathy. Cervical radiculopathy is different than CCI. Here's a link from John's Hopkins explaining this condition.

You wrote that when you turn your head you get more confused. That is a classic symptom of AAI. I had this as well. I was thrilled when it went away after my fusion.

Your breathing issues are classic CCI. Both Jen Brea and myself had breathing issues, and we both had our breathing issues go away after surgery.

After my skull to C2 fusion, I went from being profoundly disabled to getting my life back. I have literally been going to the gym and pumping iron!

Also, in regards to my fusion: I have good range of motion side to side as well as up and down. I can drive, handle all tasks, etc. This is the norm for a skull to C2 fusion.

I personally wouldn't send my images and symptoms to one of these "CCI literate" neurosurgeons because fusions don't have a good track record .

Please spend some actual time in CCI communities. There are thousands of people who have had these surgeries, and they would be very happy to share their experiences with you.

Of course, no surgery has a guaranteed outcome, whether that surgery is for CCI or anything else, such as knee replacement.

When fusion surgeries are done by the neurosurgeons I recommend, people's outcomes are overwhelmingly positive. That is the reason why I only recommend four neurosurgeons at this time. I have done hours upon hours of research into which neurosurgeons are consistently competent. As of now, I'm not comfortable recommending other neurosurgeons. There is a strong need for more expert neurosurgeons in this area, and I look forward to more being available in the future.

I'm also curious why they all have the same dr who told them they have MCAS and pots, and what tests were used to conclude they had these disorders .

It sounds like you're casting doubt on Dr. Kaufman's ability to diagnose MCAS and POTS. If you read the research, you will see how very common POTS and MCAS are with both ME and CCI, and you will also learn about how they are diagnosed.

POTS and MCAS are legitimate conditions with actual diagnostic criteria. Similarly, CCI is a legitimate condition with actual diagnostic criteria.

The neck symptoms are real but CCI is extremely rare and even then , the surgical outcomes might be something to reflect on.

CCI is not extremely rare.

You write that the "surgical outcomes (of CCI surgeries) need to be reflected upon."

I agree. That is why I have immersed myself in the CCI community for nearly two years. I immersed myself in that community both before my surgery and after my surgery.

I took my decision to have neurosurgery very seriously. Before having surgery, I researched every bit of data I could find, from published scientific articles to the accounts of thousands of people who have had fusions. I did not jump into this blindly. Quite the opposite. My entire life and well-being were on the line. I was not about to make a mistake.

Again, please spend time in CCI communities where thousands of people would be happy to share their surgical outcomes with you.

In the meantime, here are some facts to reflect upon:

1. People who are fused skull to C2, as I am, have good range of motion. We can drive, handle all tasks of daily living, etc.

2. The vast majority of surgical outcomes are positive when people go to an expert neurosurgeon.

I understand that the thought of neurosurgery can be scary to you and many others. I also understand that CCI, as it relates to ME/CFS, is a new concept to many people. New concepts tend to attract a backlash. Even those new concepts that ultimately turn out to be true go through a period of intense doubt.

Before I made the decision to have neurosurgery, I put in hundreds of hours of research, looking into scientific literature as well as joining groups of actual fusion patients, where I had thousands of personal CCI stories to draw upon. I did all of this while very ill and bedbound. It was extremely important to me to get this right.

Before I figured out that I had CCI, I spent years bedbound in a dark room. But now, my PEM and POTS are gone, my brainfog is gone, my light and sound sensitivity are gone, my neck pain and vertigo are gone, my headaches are gone, my MCAS is gone, and my breathing issues are gone.

I'm back to living my life! I'm socializing again. I'm leaving my house again on a regular basis. I'm even working out on a treadmill and pumping iron.

To you and everyone else reading this, you each have your own decisions to make. I wish each of you all the best.

 

[frozenborderline]

CCI is not extremely rare.

well, also, “cci is very rare” is sort of a tautology if it’s assumed rareness is used as a reason to not use diagnostic procedures like upright mris to diagnose it

 

[jesse's mom]

Thank you @jeff_w , wonderful post!

 

[Mary]

Please put the link to new thread here if you can, thank you.

If/when a new thread is created, yes, we'll definitely post a link here.

 

[frozenborderline]

I’m excited to find that some people with EDS do apparently exhibit PEM , or exertion intolerance in general, through searching the beyond the measurement group. Not saying it’s the same diseases , but PEM was in my mind the missing thing in @jeff_w ’s mechanical paradigm, because I wasn’t sure why some people with even a large degree of instability didn’t get diagnosed w me/cfs and/or have exertion intolerance. But it seems possible that a decent portion of eds patients DO have exertion intolerance. I wonder what would it look like if eds or cci patients took a 2-day invasive cpet with systroms lab

 

[jeff_w]

I’m excited to find that some people with EDS do apparently exhibit PEM , or exertion intolerance in general, through searching the beyond the measurement group.

Yes, many people in Beyond the Measurement, who have CCI, have PEM. They have spent their lives immersed in the EDS culture, and since they were never in the ME/CFS world, they don't use the term "PEM" to describe their experience. The term "Post Exertional Malaise" is foreign to them.

They instead write things like, "Why do I have to rest for two days after making dinner?" Or, "Why does just driving to the grocery store feel like running a marathon, and I have to lie down for days afterward?" You will see descriptions of PEM over and over in that group of CCI patients who have never spent time in the ME world.

 

[Wayne]

After my skull to C2 fusion, I went from being profoundly disabled to getting my life back. I have literally been going to the gym and pumping iron!

Mucho congratulations on all your awesome improvements! And thanks so much for coming back and sharing your insights with us. You have much to offer us, and from everything I've read, with the world as well.

BTW, I printed out your 10-page story from your website, and gave it to my Physical Therapist. She was so impressed, she made copies of it, and now shares it with professional colleagues.

 

[frozenborderline]

It makes a lot of sense that if brainstem compression could cause autonomic issues, it could cause exertion intolerance , since systroms idea of the exertion intolerance in me/cfs patients is related to preload failure Orr the leg veins not getting blood back up to the heart and brain.

However I do think there’s a more molecular aspect of exertion intolerance in terms of a global impairment in oxidative metabolism in multiple types of cells (I may be wrong on this ). In that sense I wonder what the effect of brainstem compression and inflammation could be on metabolism globally

 

[Wayne]

In that sense I wonder what the effect of brainstem compression and inflammation could be on metabolism globally

My best guess is that it could effect global metabolism a LOT. If you have brainstem compression, you likely also have vagus nerve compression and dysfunction (long implicated in ME/CFS). And the vagus nerve provides nerve energy to literally every major organ/endocrine system in our bodies, including the entire GI tract.

 

[frozenborderline]

My best guess is that it could effect global metabolism a LOT. If you have brainstem compression, you likely also have vagus nerve compression and dysfunction (long implicated in ME/CFS). And the vagus nerve provides nerve energy to literally every major organ/endocrine system in our bodies, including the entire GI tract.

That’s my guess too but I’d still like to see some papers connecting these things. Henderson and bolognese have published lots of detailed stuff that goes into the diagnostic imaging and treatments of this issue , and clinical presentation , but there’s not much there about the molecular aspect of the compression and how that influences stuff like metabolism, immunity, etc. of course mcas is even talked about as a comorbidity but not as something possibly downstream of neural injury

 

[StarChild56]

I wrote the will before I had surgery. I wouldn't be able to do it right now. I've just been through the most difficult and painful experience of my life on the heels of a grueling 18 months. My first surgery was November 28th. I only got home two weeks ago. Many of my systemic symptoms are all over the place. I am still tapering off medications. I wake up every morning at 4 or 5am in terrible pain. I've already said that the surgeries went well and cured my apnea and peripheral neurological symptoms. I have nothing to say about the long-run outcomes of these surgeries on my systemic symptoms, positive or negative, because they haven't happened yet. I will update folks further when I am ready. It would be deeply irresponsible to write about my current health status with respect to ME and POTS: it's far too early and frankly, I don't think I have the cognitive ability at present to take the care I would need to take.

If anyone is actually planning on having surgery, I'm happy to chat re: anesthesia, medication, post-surgical care and recovery. DM me here.

EDIT: Hello everyone. It's nice to be able to be here again. This is my first time even lurking on PR since December. I'm sorry that my first post is a defensive one. The emotions this topic evokes have surprised even me. I cannot speak for Jeff but I am definitely not promoting surgery to anyone. I'm completely aware of the responsibility I have given the number of patients I can reach. I do think it was important to present my diagnosis publicly as a) I could have died and b) I did end up disappearing for two months. The speculation would have been endless had I not told people what was going on. I did it with as much care and as many caveats as I possibly could. The "hype" is that some people saw their own symptoms and experiences in mine and Jeff's stories. That was inevitable as there is no way we are alone in our experience. And I do think diagnosis is important: I wish I knew I had CCI before my thyroidectomy. By sharing my story, maybe others having totally unrelated surgeries will now take care to protect their necks.

I do think this is one of the most important area of research receiving zero research attention. (Not that the other important areas of research are getting nearly enough attention!)

Thank you for taking the time to post, when you need to be resting and recuperating.

I, for one, am so thankful that you have shared your journey - you and @jeff_w - because otherwise I'd not even know I had it.

I am sorry for the attacks that have come your way (and Jeff's). I am going to PM you because I do have concerns about meds, anethesia, etc. and if you are able to reply and it does not tax you then that is great. But - you owe no one anything - not answers, nothing.

 

[JenB]

Just a small note @fredam7, I had right-sided numbness in my face and hand for years. After my thyroidectomy, I started waking up with my entire arm completely dead. It was like someone had ripped it off and it was hanging by a single nerve. It would literally just hang there. This largely resolved when I started wearing a rigid collar while sleeping. All of my weird peripheral neuro symptoms resolved with surgery. This doesn’t happen for everyone but happens for many, if CCI is the cause of these symptoms. As Jeff noted, there can be other causes, which is why imaging and consultation with potentially multiple experts are so important.

 

[Roy S]

Hi Jen,
If it is not too much trouble, I'm very curious about your toxic mold sensitivity and how it relates to this.
@JenB

 

[Diwi9]

I’m excited to find that some people with EDS do apparently exhibit PEM , or exertion intolerance in general, through searching the beyond the measurement group. Not saying it’s the same diseases , but PEM was in my mind the missing thing in @jeff_w ’s mechanical paradigm, because I wasn’t sure why some people with even a large degree of instability didn’t get diagnosed w me/cfs and/or have exertion intolerance. But it seems possible that a decent portion of eds patients DO have exertion intolerance. I wonder what would it look like if eds or cci patients took a 2-day invasive cpet with systroms lab

I never knew I was hypermobile until I was examined by a ME/CFS specialist (two have DX'd). Now, hypermobility seems obvious...lot's of signs throughout my life that I just thought meant I was extra flexible. My sister is this way too, so I didn't realize it was a "thing." I would love to get a straight answer on an EDS DX. I have been DX'd with CCI by Dr. Bolognese and my PT concurs with "loose ligaments" and seeing signs of CCI in my extension MRI. Right now, I'm doing the best I've been in three years with manual traction therapy, but I'm on lots of prescription interventions too. It's hard to tell what has made the ultimate difference, or just a combination of it all. I'm not normal (i.e. recovered), but I've had major improvements that have lasted for weeks. I do believe there is major overlap in the co-morbid DX's. Maybe it's all just the same thing that presents differently in different people. Or, a susceptibility for ME that occurs in EDS. These overlaps have been observed clinically for decades, only now are some researchers starting to notice and get curious.

 

[frozenborderline]

Hi Jen,
If it is not too much trouble, I'm very curious about your toxic mold sensitivity and how it relates to this.
@JenB

I know that @jeff_w spoke of having some mold sensitivity along with many sensitivities and allergies that improved after surgery. Jen also has discussed the possibility of mold sensitivity being related to mast cells, although many people think mold illness is more far reaching and complicated than simply mast cells/allergy, because of the various effects of mycotoxins that go beyond allergic-like effects. However many people with mold illness have benefited from mast cell stabilizers.

I’m cautious about extrapolating from any one case. Jen probably doesn’t yet know how many of her symptoms will be affected by surgery long term. Apparently people do sometimes report resolution of mcas with cci treatment, however I do not think that anybody quite understands or has investigated this connection in formal research

 

[Wayne]

However many people with mold illness have benefited from mast cell stabilizers.

FWIW, some people with mold illness have also benefited from reducing their EMF and other radiation exposures.