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

[Gingergrrl]

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.

You are right and I apologize for getting ahead of myself! I should know better than anyone not to assume anything about the future and I think I was just so hopeful for you when I read your story that I wanted to make it so!

In my own case (at least at present) the best I will ever refer to it is a "remission". I will never use the word recovery, let alone cure, unless this sustains itself after I am done with treatments and I am able to work again in my career. But... I am still hopeful for you (and hope that is okay)

 

[lafarfelue]

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

I just ran a quick search and there seem to be a few places around Australia that have upright MRI machines. You should be able to narrow them down by also searching for a specific Australian state or major city.

Then before getting a referral, it's probably worth calling up/emailing and checking that they'd be able/willing to run the necessary positions.

 

[zzz]

I have been informed by Dr. Kaufman, who is both @jeff_w's doctor and mine, that the current thinking, which is now embraced by the doctor who did Jeff's surgery, is that a standard, supine MRI is actually much better than an open MRI for diagnosing CCI and Chiari malformation, as long as the supine MRI has a strength of at least 3 Tesla (which is becoming very standard these days). The reason for this change is that a 3 Tesla supine MRI machine has far greater precision than open MRI machines, which typically have magnetic field strengths of 0.3 to 0.7 Tesla - one fifth to one tenth of that of a 3 Tesla supine MRI machine.

As 3 Tesla supine MRI machines are fairly standard and are much more common than open MRI machines, this should make it much easier for people to get diagnostic tests for these conditions. It is allowing me to get tested here in my home city under Dr. Kaufman's direction, even though there are no open MRI machines here.

 

[Gingergrrl]

It is allowing me to get tested here in my home city under Dr. Kaufman's direction, even though there are no open MRI machines here.

Great news

 

[sb4]

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.

This is good advice however I have done a cervical collar and a 20kg manual traction device and felt no different at all. This is one of the reasons I am doubtful of this being a problem in me and why I don't really want to shell out on an MRI, a negative result would be a huge setback.

At the moment I am just working on my general posture and trying to get me head to stop jutting forward. A manual traction from a chiropractor maybe a shout though.

 

[bombsh3ll]

I have been informed by Dr. Kaufman, who is both @jeff_w's doctor and mine, that the current thinking, which is now embraced by the doctor who did Jeff's surgery, is that a standard, supine MRI is actually much better than an open MRI for diagnosing CCI and Chiari malformation, as long as the supine MRI has a strength of at least 3 Tesla (which is becoming very standard these days). The reason for this change is that a 3 Tesla supine MRI machine has far greater precision than open MRI machines, which typically have magnetic field strengths of 0.3 to 0.7 Tesla - one fifth to one tenth of that of a 3 Tesla supine MRI machine.

As 3 Tesla supine MRI machines are fairly standard and are much more common than open MRI machines, this should make it much easier for people to get diagnostic tests for these conditions. It is allowing me to get tested here in my home city under Dr. Kaufman's direction, even though there are no open MRI machines here.

Hi I am one of the people possibly in the same boat as Jeff with hypermobile EDS and diagnosed with cranial settling by Dr Gilete following upright MRI scans done in the UK.

I just wanted to mention that the reason for upright scans in people with collagen disorders like EDS is not the quality of the scan or resolution etc conpared to supine, it is to see the effect of gravity on the structures being scanned. If you have lax connective tissue the brainstem and surrounding structures can be in normal position (how many of us are symptomatic standing or sitting but better lying down) and only descend into an abnormal orientation under the effects of gravity.

As for my current situation, I went to Barcelona for a consult with Dr Gilete & have been offered a trial of halo brace but the cost of this is £8k which I do not currently have. Also this would just be for 2-3 days in the hospital then it would be removed, so I am worried it may not be long enough to truly allow the brainstem to decompress, and if the halo did improve my condition the cost of fusion surgery would be about £58k which is out of my reach.

Dr Gilete did say I could try a Philadelphia collar but that this doesn't always really help predict who will benefit from surgery. I am still looking into the hard collars but have no idea where to start re sizing and fitting as I am largely housebound and would just have to randomly order one online.

B x

 

[bombsh3ll]

I have done a cervical collar and a 20kg manual traction device

That's a good idea for a low cost trial. Please can you let us know the products you used and where you bought them from?

B x

 

[Mel9]

I have been informed by Dr. Kaufman, who is both @jeff_w's doctor and mine, that the current thinking, which is now embraced by the doctor who did Jeff's surgery, is that a standard, supine MRI is actually much better than an open MRI for diagnosing CCI and Chiari malformation, as long as the supine MRI has a strength of at least 3 Tesla (which is becoming very standard these days). The reason for this change is that a 3 Tesla supine MRI machine has far greater precision than open MRI machines, which typically have magnetic field strengths of 0.3 to 0.7 Tesla - one fifth to one tenth of that of a 3 Tesla supine MRI machine.

As 3 Tesla supine MRI machines are fairly standard and are much more common than open MRI machines, this should make it much easier for people to get diagnostic tests for these conditions. It is allowing me to get tested here in my home city under Dr. Kaufman's direction, even though there are no open MRI machines here.

That is very useful to know!

 

[Dakota15]

@zzz - thank you for sharing. That echoes what I had heard as well, albeit through Dr. Chheda.

 

[JenB]

I have been informed by Dr. Kaufman, who is both @jeff_w's doctor and mine, that the current thinking, which is now embraced by the doctor who did Jeff's surgery, is that a standard, supine MRI is actually much better than an open MRI for diagnosing CCI and Chiari malformation, as long as the supine MRI has a strength of at least 3 Tesla (which is becoming very standard these days). The reason for this change is that a 3 Tesla supine MRI machine has far greater precision than open MRI machines, which typically have magnetic field strengths of 0.3 to 0.7 Tesla - one fifth to one tenth of that of a 3 Tesla supine MRI machine.

As 3 Tesla supine MRI machines are fairly standard and are much more common than open MRI machines, this should make it much easier for people to get diagnostic tests for these conditions. It is allowing me to get tested here in my home city under Dr. Kaufman's direction, even though there are no open MRI machines here.

It depends on the surgeon. Every surgeon has a different view on this and prefers different imaging. @jeff_w perhaps your website should make mention of this? There really is no “gold standard.”

 

[Dakota15]

@Jen8 - that's definitely a fair point and should be noted

 

[JenB]

Hi @jeff_wI have EDS, CFS, POTS & MCAS honestly never thought they were linked until I read your story.

The EDS community has to date completely ignored ME/CFS but your other conditions are all thought and accepted to be commonly comorbid. Most EDS doctors in the US I have found are very aware of POTS and MCAS (to a greater degree than ME/CFS clinicians, although they are catching up).

http://mentalfloss.com/article/87506/one-gene-mutation-links-three-mysterious-debilitating-diseases

I can’t find the link, but EDS, POTS, and MCAS groups are actively collaborating on research. Every EDS doctor I’ve seen has asked about POTS and MCAS (but knowledge of PEM/PENE nonexistent).

 

[frozenborderline]

I have had neck pain and a feeling of my head being very heavy on top of all of the usual CFS symptoms. This symptom hasn't dominated for the most part but has become a little more present recently. How to differentiate between just weaker muscles and typical muscle pain (but localized in the neck) and CCI? I also have POTS but not as severe as in Jeff's blog. I would be curious about trying traction or neck brace just on my own as it would be hard to get to one of these specific doctors but I don't know if the over the counter neck braces you can get on amazon would really be worth it or helpful?

 

[JenB]

I just wanted to mention that the reason for upright scans in people with collagen disorders like EDS is not the quality of the scan or resolution etc conpared to supine, it is to see the effect of gravity on the structures being scanned. If you have lax connective tissue the brainstem and surrounding structures can be in normal position (how many of us are symptomatic standing or sitting but better lying down) and only descend into an abnormal orientation under the effects of gravity.

Yes, that is Gilette’s POV. Gillette, Henderson, and Bolognese all require slightly different scans/have different preferences. They will make do with what you’ve got and ask for additional scans if needed. Best is to figure out who you want to consult with first and confirm what scans you need.

Note: my upright flex/extension was borderline normal and certainly not diagnostic. I was diagnosed via what was essentially a motion x-ray.

It’s really worth joining the Beyond the Measurement Group on FB. There are so many layers to this and it can be helpful to benefit from multiple patients’ experiences with different cases and different doctors.

 

[JenB]

I have had neck pain and a feeling of my head being very heavy on top of all of the usual CFS symptoms. This symptom hasn't dominated for the most part but has become a little more present recently. How to differentiate between just weaker muscles and typical muscle pain (but localized in the neck) and CCI? I also have POTS but not as severe as in Jeff's blog. I would be curious about trying traction or neck brace just on my own as it would be hard to get to one of these specific doctors but I don't know if the over the counter neck braces you can get on amazon would really be worth it or helpful?

You can’t w/o imaging. And the general thinking among EDS PTs is that muscle weakness/deconditioning can contribute to symptoms as if you have lax ligaments, usually your muscles compensate. A common management strategy for hEDS is PT to strengthen muscles so as to stabilize joints that are incompletely stabilized by ligaments.

The neck braces you buy on Amazon are the same as what your doctor would give you. My first was a Philadelphia collar, which I bought from a medical supply store (but you can also order online). Now I have a Miami J w/ thoracic extension but still use the Philadelphia collar for specific reasons. Most popular in the EDS community is the Aspen Vista. One benefit of it is that it’s completely adjustable so you don’t need to measure your size. But figuring out my Philadelphia collar size was pretty easy.

Perhaps something about neck braces would also be useful @jeff_w

 

[JenB]

Is there an admin who can change the title of this thread? It’s super confusing as there’s so much on here about CCI. Maybe it should say, “Have you ruled out Chiari malformation or craniocervical instability as the cause of your ME/CFS?” Might help people more easily find and understand this thread.

 

[frozenborderline]

You can’t w/o imaging. And the general thinking among EDS PTs is that muscle weakness/deconditioning can contribute to symptoms as if you have lax ligaments, usually your muscles compensate. A common management strategy for hEDS is PT to strengthen muscles so as to stabilize joints that are incompletely stabilized by ligaments.

The neck braces you buy on Amazon are the same as what your doctor would give you. My first was a Philadelphia collar, which I bought from a medical supply store (but you can also order online). Now I have a Miami J w/ thoracic extension but still use the Philadelphia collar for specific reasons. Most popular in the EDS community is the Aspen Vista. One benefit of it is that it’s completely adjustable so you don’t need to measure your size. But figuring out my Philadelphia collar size was pretty easy.

Perhaps something about neck braces would also be useful @jeff_w

Okay, so I can't rule it out totally without imaging, but when i read Jeff's story he noted he pulled his head up and felt relief, for one. I can't really manage to do that but I wonder if I wore a brace if it would help in a diagnostic sense, or help with relief.

Thanks for the info on the philadelphia collar! it looks very affordable and i'm taking notes on all of this.

I haven't really had any other EDS symptoms and I doubt this is behind all of my symptoms but given how several people have gotten relief I'm curious, especially since i just recently have started to have intense neck tiredness

 

[JenB]

Okay, so I can't rule it out totally without imaging, but when i read Jeff's story he noted he pulled his head up and felt relief, for one. I can't really manage to do that but I wonder if I wore a brace if it would help in a diagnostic sense, or help with relief.

Thanks for the info on the philadelphia collar! it looks very affordable and i'm taking notes on all of this.

I haven't really had any other EDS symptoms and I doubt this is behind all of my symptoms but given how several people have gotten relief I'm curious, especially since i just recently have started to have intense neck tiredness

I didn’t have other hEDS symptoms, either, unless you count POTS and MCAS as hEDS symptoms, but you can also count them as ICC-ME symptoms. And I don’t meet the criteria for hEDS.

Yes, if you wear a collar and feel better, that is a clue. That’s the first thing I did (as I write about in my essay). Re: a philadelphia collar, I bought mine from a local medical supply store (rather than online) but here is a great sizing guide: https://www.necksolutions.com/philadelphia-collar.html

 

[frozenborderline]

I didn’t have other hEDS symptoms, either, unless you count POTS and MCAS as hEDS symptoms, but you can also count them as ICC-ME symptoms. And I don’t meet the criteria for hEDS.

Yes, if you wear a collar and feel better, that is a clue. That’s the first thing I did (as I write about in my essay). Re: a philadelphia collar, I bought mine from a local medical supply store (rather than online) but here is a great sizing guide: https://www.necksolutions.com/philadelphia-collar.html

Thanks for the help, and also I just realized you are that Jen B, so obligatory thank you for all you've done for ME/CFS patients with your work.

 

[JenB]

Aww. Thanks So much work left to do. Hoping for much better days, for all of us.