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

[erin]

@jeff_w thank you so much for sharing your experiences. Your recovery gave us so much hope. It is so wonderful to hear that some of us do recover, I can't even articulate my feelings well, so exciting.

Take care and keep getting better and better.

 

[MEPatient345]

That’s so amazing to hear how well it has worked for you. Congratulations on your progress so far. It seems like such an ordeal and actually scares the shit out of me, reading about all this stuff. But good to hear of ME patients finding actual real solutions. Will you keep us updated on this thread on your progress?

I thought Sandhu looked good too so glad to see him on your list. He takes Medicare too. I am going to look into getting imaging done in Munich as step one.

 

[Lisa108]

There are more upright mri facilities in Germany, even one close to me in Hamburg. List is here. I'd struggle to pay the costs for this (my parents would step in), but there is no way that I could go to U.S. (or even Spain) for surgery and hospital stay afterwards...
Still thankful to @jeff_w to bring this up and keep us informed about your amazing tour de force. I am very happy for you!

 

[denlander]

I personally know of 2 people that for years had a CFS diagnosis and were finally found to have a chiari malformation and their issues resolved after minor surgery.
The symptoms of chiari are almost identical to CSF.

Just a thought...

The Chiari syndrome was in vogue about 10 years ago, when patients were advised by a neurosurgeon that the brain was herniating through the foramen magnum, the "hole" in the skull allowing the brain to make contact the spinal cord . The surgery was NOT minor, it involved enlarging the foramen magnum. It was in most cases not helpful. There were some cases that were successful but these were the minority. Please be careful and take neurosurgical specialist advice.

 

[denlander]

Hi, @Nickster -

Dr. Cheda will need to write an MRI order for your son. The exact order should be an MRI of the skull and cervical spine, upright with flexion-extension. Odds are, Dr. Cheda won't be familiar with this procedure. But, if she's like Dr. Kaufman, she will listen to you and write the order, especially if you bring in research supporting the need for this type of MRI.

During the upright MRI, your son needs to flex his head forward as far as he can. He'll then have a neutral image, without flexing. Then, he'll need to bend his neck backwards as far as he can. He needs to demonstrate his entire range of motion for this test. (The radiology techs don't always give detailed instructions, so I included them here. In my case, he gave me the incorrect instructions, so I had to repeat the test.)

A few days or weeks after the MRI, you'll receive a radiology report. Ignore it. Radiologists aren't trained to look for this problem, craniocervical instability (CCI). So, the written report is meaningless for this purpose.

You'll need to request multiple hard copies of his MRI CDs. Then, you'll need to mail the MRI CDs to one or more of the following three neurosurgeons: Dr. Bolognese (New York), Dr. Henderson (Maryland), or Dr. Gilete (Barcelona, Spain). These are the only neurosurgeons who consistently know how to read these images to diagnose CCI.

As for me, I'm having neurosurgery with Dr. Bolognese on January 31st (as long as my insurance authorizes it). He'll be doing a craniocervical fusion from my skull to my second vertebrae. It's technically called a C0-C2 fusion.

This C0-C2 fusion usually results in a 40% loss of range of motion in the upper neck and skull. But! I chose Dr. Bolognese, because he does a more advanced fusion that only results in a 10% loss of range of motion.

Good luck to you and your son with all of this!

what was the outcome of the surgery? I hope it was successful. It should be noted that the surgery is not performed routinely in ME CFS and is applicable to a particular abnormality in the skull and cervical vertabrae

 

[Mary]

@jeff_w - this is amazing. I remember your posts from some years ago and you were so sick, I was worried about you and then you seemed to disappear for a long time and I often wondered how you were.

This must feel like a miracle for you. I am so happy for you!

I'd seen this thread but never took the time to look at it until yesterday.

Thanks so much for posting all this information and thanks to @Shawn for starting the thread!

- @Ben H , I'm tagging you here because I believe you have been as sick as Jeff was, and this might be of interest to you

 

[jeff_w]

The Chiari syndrome was in vogue about 10 years ago, when patients were advised by a neurosurgeon that the brain was herniating through the foramen magnum, the "hole" in the skull allowing the brain to make contact the spinal cord . The surgery was NOT minor, it involved enlarging the foramen magnum. It was in most cases not helpful. There were some cases that were successful but these were the minority. Please be careful and take neurosurgical specialist advice.

@denlander - That was 10 years ago. It was just being discovered. There were a lot of run-of-the-mill neurosurgeons, who were not true specialists in this area, operating on these patients.

The science has evolved, and it's a very interesting read. Dr. Fraser Henderson's recent published research is a great resource. There are recent peer-reviewed, academic research articles on this condition and the other related neurosurgical conditions (craniocervical instability, tethered cord, etc.).

Another issue with the Chiari surgeries not being helpful ten years ago was that neurosurgeons were not recognizing the concomitant craniocervical instability (CCI) in these patients. They were treating the Chiari only, when CCI was also present and responsible for many -- if not most of -- their symptoms.

In my case, I had Craniocervical Instability without any herniation (aka Chiari).

So, I have not had the decompression surgery (aka " the Chiari surgery"). I have had a fusion surgery -- from my skull to my second vertebrae (C0-C2).

 

[jeff_w]

what was the outcome of the surgery? I hope it was successful.

Thanks! The outcome has been successful. Years of disabling POTS and PEM are gone.

I posted about it the surgical outcome in detail, earlier in this thread.

 

[jeff_w]

That’s so amazing to hear how well it has worked for you. Congratulations on your progress so far.

Thank you.

It seems like such an ordeal and actually scares the shit out of me, reading about all this stuff. But good to hear of ME patients finding actual real solutions. Will you keep us updated on this thread on your progress?

Yes!

I thought Sandhu looked good too so glad to see him on your list. He takes Medicare too. I am going to look into getting imaging done in Munich as step one.

Glad to hear it!

 

[jeff_w]

The Chiari syndrome was in vogue about 10 years ago, when patients were advised by a neurosurgeon that the brain was herniating through the foramen magnum, the "hole" in the skull allowing the brain to make contact the spinal cord . The surgery was NOT minor, it involved enlarging the foramen magnum. It was in most cases not helpful. There were some cases that were successful but these were the minority. Please be careful and take neurosurgical specialist advice.

First, I did not have my foramen magnum enlarged. I had a completely different surgery than what you're describing here.

One issue with the Chiari surgeries not being helpful ten years ago was that neurosurgeons were not recognizing the concomitant craniocervical instability (CCI) in these patients. They were treating the Chiari only, when CCI was also present and responsible for many -- if not most of -- their symptoms.

In my case, I had Craniocervical Instability without any herniation (aka Chiari).

I have had a fusion surgery -- from my skull to my second vertebrae (C0-C2).

 

[jeff_w]

It should be noted that the surgery is not performed routinely in ME CFS and is applicable to a particular abnormality in the skull and cervical vertabrae

You are citing the experiences of ME/CFS specialists from ten years ago.

It cannot be overstated: Patients with ME/CFS are not being routinely and correctly evaluated for these conditions.

As such, the actual incidence of these neurosurgical issues in our population remains unexplored.

The fact that Chiari and Craniocervical Instability weren't really understood ten years ago shouldn't stop one from exploring these issues today, in light of current peer-reviewed academic science.

Peer-reviewed academic research from 2017: Here

Peer-reviewed academic research from 2018: Here

 

[Gingergrrl]

The fact that Chiari and Craniocervical Instability weren't really understood ten years ago shouldn't dissuade these issues being explored today, in light of current peer-reviewed academic science.

I agree with you, even though these particular issues do not pertain to my case. There are endless illnesses (even common, mainstream ones) in which we knew next to nothing ten years ago. And then for something more obscure like POTS or MCAS or Chiari/CCI, I think we were in the literal dark ages ten years ago compared to now. I am thrilled that all of these things are being explored today.

 

[jeff_w]

The surgery was NOT minor, it involved enlarging the foramen magnum. It was in most cases not helpful. There were some cases that were successful but these were the minority. Please be careful and take neurosurgical specialist advice.

I bolded your words, above, as I find them problematic. First, I did not have any surgery that enlarged my foramen magnum. I had a craniocervical fusion, which is an entirely different surgery than what you're describing.

As a result of my surgery, I no longer have the POTS and PEM that I had for four years as a result of brain stem compression.

The Chiari syndrome was in vogue about 10 years ago, when patients were advised by a neurosurgeon that the brain was herniating through the foramen magnum, the "hole" in the skull allowing the brain to make contact the spinal cord .

Chiari has never been "in vogue" with the neurosurgery community. Perhaps your intention was to convey that exploring Chiari was "in vogue" with CFS/ME specialists a decade ago?

Can you specify how this neurosurgical knowledge has advanced in the last ten years?

You are pointing out the out problems that ME/CFS specialists, who are not neurosurgical specialists, encountered a decade ago, when this knowledge was in its infancy. Your choice to focus on outcomes that belong in the annals of history, rather than on current science, could potentially scare people who would be helped by actual modern medical science.

Peer-reviewed academic research from 2017: Here

Peer-reviewed academic research from 2018: Here

Now, let's take a look at cardiologists as a relevant example of doctors updating -- or not updating -- their knowledge base. Many cardiologists do not know how to identify POTS, which is rampant in our population. Despite current science verifying the validity and existence of POTS, many cardiologists routinely fail to test for it, and some will even deny its existence altogether.

Should one then tell people on this board to "please be careful and take cardiology specialist advice" if a run-of-the-mill cardiologist tells them that, despite severe POTS symptoms, they had "nothing wrong," or that their POTS symptoms were "just anxiety?"

And -- even worse -- if that warning were based on the state of cardiology 10 years ago, without bothering to incorporate modern medical science?

Such a warning would be obsolete, unjustified, uninformed, and thus irresponsible. Such a warning could even keep people, who would otherwise be helped, stuck in a perpetual state of lifelong disability.

 

[MEPatient345]

Such a warning would be obsolete, unjustified, uninformed, and thus irresponsible. Such a warning could even keep people, who would otherwise be helped, stuck in a perpetual state of lifelong disability.

@jeff_w, I think people can write questioning comments in a forum without scaring away patients from researching these conditions. It seems @denlander didnt read the full thread but is responding to the title about Chiari.

Anyone researching Chiari or cranial settling they will find blogs and forums full of people where surgery didn’t work for their symptoms, or where multiple doctors told them surgery wasn’t necessary, or in worst case where they got worse from surgery. It’s part of the research process to understand all the factors involved, and make your own choice based on your own diagnoses and what you believe is an acceptable amount of risk. So, if someone is going to immediately stop researching based on one comment in a forum, then this direction is probably not for them anyway.

 

[MEPatient345]

@jeff_w Question about travel after surgery — did you have to relocate for a while to get surgery and recuperate? Or were you able to go home soon after surgery?

 

[denlander]

I bolded your words, above, as I find them problematic. First, I did not have any surgery that enlarged my foramen magnum. I had a craniocervical fusion, which is an entirely different surgery than what you're describing.

As a result of my surgery, I no longer have the POTS and PEM that I had for four years as a result of brain stem compression.



Chiari has never been "in vogue" with the neurosurgery community. Perhaps your intention was to convey that exploring Chiari was "in vogue" with CFS/ME specialists a decade ago?

Can you specify how this neurosurgical knowledge has advanced in the last ten years?

You are pointing out the out problems that ME/CFS specialists, who are not neurosurgical specialists, encountered a decade ago, when this knowledge was in its infancy. Your choice to focus on outcomes that belong in the annals of history, rather than on current science, could potentially scare people who would be helped by actual modern medical science.

Peer-reviewed academic research from 2017: Here

Peer-reviewed academic research from 2018: Here

Now, let's take a look at cardiologists as a relevant example of doctors updating -- or not updating -- their knowledge base. Many cardiologists do not know how to identify POTS, which is rampant in our population. Despite current science verifying the validity and existence of POTS, many cardiologists routinely fail to test for it, and some will even deny its existence altogether.

Should one then tell people on this board to "please be careful and take cardiology specialist advice" if a run-of-the-mill cardiologist tells them that, despite severe POTS symptoms, they had "nothing wrong," or that their POTS symptoms were "just anxiety?"

And -- even worse -- if that warning were based on the state of cardiology 10 years ago, without bothering to incorporate modern medical science?

Such a warning would be obsolete, unjustified, uninformed, and thus irresponsible. Such a warning could even keep people, who would otherwise be helped, stuck in a perpetual state of lifelong disability.

It is clear that your surgery was not Chiari surgery but vertebral fusion. Not every case of ME CFS has vertebral instability, obviously this possibility should be examined, most physicians are unaware of the instability.

 

[jeff_w]

@jeff_w, I think people can write questioning comments in a forum without scaring away patients from researching these conditions. It seems @denlander didnt read the full thread but is responding to the title about Chiari.

Agreed. But @denlander is not sick with brain fog. He is in fact a practicing ME/CFS doctor with a lot of power and a lot of people's futures in his hands. So, I held him to a higher standard of actually reading the thread (and current research) before making the comments he made.

So, if someone is going to immediately stop researching based on one comment in a forum, then this direction is probably not for them anyway.

Thanks.

 

[jeff_w]

@jeff_w Question about travel after surgery — did you have to relocate for a while to get surgery and recuperate? Or were you able to go home soon after surgery?

I was able to go home 10 days after surgery. My neurosurgeon recommends staying in the area for at least 5 days before flying home.

Since I had been in the halo for four months prior to surgery, I went into the surgery in a much better state than if I had not been in the halo. I went into this having been free from brain stem compression ("ME/CFS" - POTS, PEM, light sensitivity, profound exhaustion) for four months. I was also very lucky to have my dad travel with me and help me.

It would have been hard to do this alone, though not impossible.

 

[jeff_w]

It is clear that your surgery was not Chiari surgery but vertebral fusion.

It was a craniocervical fusion. It was extended to C2 (C0-C2).

Not every case of ME CFS has vertebral instability,

The incidence of craniocervical instability in ME/CFS is actually unknown.

A sweeping blanket statement of "not every case of ME CFS has ____" could apply to any potential causative factor. Such a statement could also mislead people.

If ME/CFS specialists would start ruling out (or in) these neurosurgical issues, as a first line of inquiry, the incidence would become known.

obviously this possibility should be examined,

Yes, it should. But, it is not being examined by ME/CFS specialists at this point in historical time.

most physicians are unaware of the instability.

This would change if ME/CFS specialists would keep up with current research about the connection between POTS, PEM, and brain stem compression.

This would also change if ME/CFS specialists would partner with actual Chiari/CCI specialist neurosurgeons. There are just a handful of these neurosurgeons in the world, and I have named all of them in this thread.

 

[scisolver]

I've thought of testing for Chiari and P3C (positional cervical cord compression). I hadn't heart of the thered Cord Syndrome. The testing is an issue since I have no idea who to look for to test for it. I did call johns hopkins Chiari center and they said to just use any MRI and if I have it come see them, which was very shocking. I had talked to somebody who said they had Chiari and used a positional MRI with Hopkins Chiari center.

I feel like every time I call somebody up or go somewhere I'm living in some alternate reality.