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

Hip

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@Hip, do you have more info about that? Sounds interesting.
I don't know how autoimmunity actually causes pannus (autoimmune ligament swelling), but Dr Bolognese in this 2014 video at 11:33 explains how this swelling can lead to brainstem compression CCI.

He says that if the dens bone is already a bit tilted towards the brainstem, and then on top of that, you also get swelling of the ligament next to the dens, then you have a double-wammy effect, which can lead to brainstem compression.

It is the Grabb-Oakes line that measures this double-wammy effect: Grabb-Oakes measures the combined effect of the dens titling towards the brainstem, plus any swelling of the ligament adjacent to the dens (there is a ligament between the dens and the brainstem).

The Grabb-Oakes line is the yellow one in the image below:
1562431970022.png
 
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toyfoof

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Did you explain this to Dr B? As you know, in his patient instructions, he asks people to get manual traction from a PT and then report back to him if their top 3 main symptoms are changed by traction.
No, it was months ago that he turned me down for his practice (though he did email me a few weeks ago and ask if I’d tried traction). Since then I’ve decided I’d prefer to see a surgeon who focuses on the whole neck (and possibly spine) because I believe most/all of my problems are stemming from my stenosis and kyphosis lower down (C5-C7).

But I’m definitely noting this effect. Also, yesterday afternoon, just about exactly 24 hours after my session, I crashed hard. My vision went wonky and I got very nauseous, and then I lost all strength. We were in the car (I was thankfully not driving) and as soon as we got home I stumbled into bed with an awful migraine and did not get out again until noon this morning.

I’ve heard that rebound crashes after traction are another diagnostic symptom, so .... the plot thickens.
 

Waverunner

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He says that if the dens bone is already a bit tilted towards the brainstem, and then on top of that, you also get swelling of the ligament next to the dens, then you have a double-wammy effect, which can lead to brainstem compression.
Great finding, thank you so much for the link to the video. Do we know anything about how to prevent swelling of ligaments e.g. through cold compresses? Are there any drugs that specifically reduce swelling of ligaments?
 

Hip

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Do we know anything about how to prevent swelling of ligaments e.g. through cold compresses? Are there any drugs that specifically reduce swelling of ligaments?
That's a good question, I have not looked into it. The ligament swelling is due to autoimmune attack, so drugs which quell the autoimmune response might help.

Perhaps that explains why rituximab has very occasionally cured ME/CFS patients: maybe those patients it cured really had CCI due to ligament swelling, and the reason rituximab worked is because it it stopped the autoimmune attack and allowed the swollen ligament to return to normal size.
 

Waverunner

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@Hip A very interesting theory. I wish more researchers would look into this topic.

I only found these standard approaches:

https://orthoinfo.aaos.org/en/diseases--conditions/neck-sprain/

All sprains or strains, no matter where they are located in the body, are treated in a similar manner. Neck sprains, like other sprains, will usually heal gradually, given time and appropriate treatment. You may have to wear a soft collar around your neck to help support the head and relieve pressure on the ligaments so they have time to heal.

Pain relievers such as aspirin or ibuprofen can help reduce the pain and any swelling. Muscle relaxants can help ease spasms. You can apply an ice pack for 15 to 30 minutes at a time, several times a day for the first 2 or 3 days after the injury. This will help reduce inflammation and discomfort. Although heat, particularly moist heat, can help loosen cramped muscles, it should not be applied too quickly.

Other treatments may be helpful as your injury starts to improve. These treatments should not be started, however, without the supervision of your doctor. They include:

  • Massaging the tender area
  • Ultrasound therapy
  • Cervical (neck) traction
  • Aerobic and isometric exercise
 

StarChild56

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I don't get itchy. I do get a "burning skin" sensation (and in inner ears), sometimes with hormone changes and sometimes just randomly. It also alerts me that I'm "overdone". I first noticed that burning skin sensation when I started Lyrica, many years ago (before ME diagnosis), and subsequent meds after that. I recently started getting not hives, but a reddish striped rash from the sun. GI problems come and go. As with all of my symptoms, there isn't much method to the madness. For a few things I can see some cause and effect, but usually once I think I have determined some kind of cause and effect, it changes :)

If surgery ends up being on the table, I will look into the further MCAS testing that you mentioned, prior to it.
I realize I am really late, but wanted to wish you good luck in this/best wishes :)
 

StarChild56

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This translation BAI measurement can only be measured if you supplied scans with your head in flexion and extension positions (imaging which Dr B usually does not look at). These 6 did not have any other measurement pathologies, apart from 2 of them having a pathological CXA.
Dr. Bolognese requested my supine MRI with flexion and extension...my MRI was reviewed in November 2019 but I actually got the MRI in August (and my specialist specifically had me request the flexion / extension so that Dr. B would review it).
 

Hip

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Dr. Bolognese requested my supine MRI with flexion and extension
That's interesting, did he request your initial MRI to be in flexion and extension, or was it only after he looked at your first MRI did he order a second MRI in flexion and extension? In one of his his videos on YouTube, Dr Bolognese says normally he only asks for supine MRI with the head in a neutral position; it's only on rarer occasions that he asks for flexion and extension.

Is it straightforward to request supine MRIs with flexion and extension from a radiologist? Since supine MRIs are much more common and much cheaper than uprights, I wonder why Dr Gilete and Dr Henderson do not request these? It would make it easier for patients.

I know though that Dr Henderson said in this 2012 video at 15:47 that it is often important to use an upright MRI, because the weight of the head bears down on the spine differently in an upright, compared to a supine MRI where the patient is lying down.
 
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@jeff_w just read your blog as it was recommended on my thread. Going thru a severe crash now. I had ongoing neck issues my entire life and ruled out out as a cause of anything because my family doc at the time said it was normal.

I seem to have lots of Neuro issues that not many people here have including heavy spasms and tremors that get very bad during PEM.


The part written in your blog about heart rate dropping at night, I can fully understand this. Did you also wake up in the middle of the night multiple times need stretching followed by heart palpitations? I believe it's a body mechanism to increase blood pressure due to the dropping heart rate.

Anyway wish I can see Dr. Kaufman but not in any state to see a doctor right now. Going thru some really bad crash.
 
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I seem to have lots of Neuro issues that not many people here have including heavy spasms and tremors that get very bad during PEM.
Hi @powertool4 Just curious how you would describe these spasms/tremors. I call mine convulsions or the “tired shakes” bc I get them after overdoing especially overstimulation. But they are similar to the bad shaking chills one gets with a bad fever but without being cold or fevered. They constrict my muscles so badly in my shoulders, neck, jaw & head that inevitably a migraine will follow. The vascular system is involved somehow or possibly it’s all autonomic but blood flow will redirect from my extremities & pool in my core & upper thighs which will be unpleasantly radiating heat while my hands & feet will be ice cold. It all happens at the same time w the convulsions. Anything sound familiar?
 
Hi @powertool4 Just curious how you would describe these spasms/tremors. I call mine convulsions or the “tired shakes” bc I get them after overdoing especially overstimulation. But they are similar to the bad shaking chills one gets with a bad fever but without being cold or fevered. They constrict my muscles so badly in my shoulders, neck, jaw & head that inevitably a migraine will follow. The vascular system is involved somehow or possibly it’s all autonomic but blood flow will redirect from my extremities & pool in my core & upper thighs which will be unpleasantly radiating heat while my hands & feet will be ice cold. It all happens at the same time w the convulsions. Anything sound familiar?
It sounds very similar. When my baseline energy is good (ie I can drive and do grocery shopping etc) I can tell I'm over exerting because I'll start to feel really lightheaded and then when I sit down to rest my arms especially my forearms and neck will spasm out of control. They tighten about once a second and it continue until the PEM subsides but it's a part of my daily life.


When my baseline is low like when I'm in a crash right now actually, it gets really bad and starts to spread to the rest of my body including my upper arms and quads. It very much feels like a convulsion and happens with minimal exertion like getting up to go to the bathroom. In a really really severe crash my hands and feet will get numb and very cold and I'll feel extremely withdrawn. Heart palpitations and nervousness that's very bad.


It's quite amazing and I'm always struck at the contrast of my health. Last week I was normal and driving and came crashing down and unable to merely exist without hardship barely able to eat.

But the feeling like I have a fever withouta fever is a good description. The spasms are visible and it does look like I'm getting a mild electro physical therapy from an outside perspective.

Actually that's exactly how it feels. My nervous system is out of control and firing wrong.
 
Does anyone have a local Doctor who is familiar or at least open to prescribing these scans in the southern California area? I see people are getting scanned before traveling to see a specialist.


Idk if it's my issue but this is one area I had always suspected when in high school my football helmet would cause tingling and burning in my face and jaw.

It progressed to facial muscle weakness and eventually a year later is when I was diagnosed with chronic fatigue. Now more than 10 years later it had progressed to severe ME but can't help but think I should check out my neck more.

Basic laying down MRI showed stenosis and herniated disc with osteophyte back in 2003. X-rays from chiropractors show a massively compressed cervical spine. I have all sorts of crunching and popping in my neck when I turn side to side. I gave up riding a motorcycle because the helmet would cause my hands and face to tingle.
 
Basic laying down MRI showed stenosis and herniated disc with osteophyte back in 2003. X-rays from chiropractors show a massively compressed cervical spine. I have all sorts of crunching and popping in my neck when I turn side to side. I gave up riding a motorcycle because the helmet would cause my hands and face to tingle.
This alone is enough to cause, CFS-like symptoms if not full blown CFS. The link between spinal chord compression and fibromyalgia seems very strong according to several studies. The same could possibily be true for ME / CFS.
 
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That's interesting, did he request your initial MRI to be in flexion and extension, or was it only after he looked at your first MRI did he order a second MRI in flexion and extension? In one of his his videos on YouTube, Dr Bolognese says normally he only asks for supine MRI with the head in a neutral position; it's only on rarer occasions that he asks for flexion and extension.

Is it straightforward to request supine MRIs with flexion and extension from a radiologist? Since supine MRIs are much more common and much cheaper than uprights, I wonder why Dr Gilete and Dr Henderson do not request these? It would make it easier for patients.

I know though that Dr Henderson said in this 2012 video at 15:47 that it is often important to use an upright MRI, because the weight of the head bears down on the spine differently in an upright, compared to a supine MRI where the patient is lying down.
I was going to get a (supine) cervical MRI from my PCP due to worsening neck pain + migraines. I had neck issues and migraines for over 5 years at that point which started with a very bad car crash (I was rear ended when at full stop by a large vehicle going very fast). I'd had a cervical MRI a year after the crash which revealed various neck problems.

When discussing this (worsening symptoms, going to see PCP about a cervical MRI) my specialist told me to ask for the additional views - flexion and extension. He emailed me exactly what my PCP should add on to her order for a cervical MRI.

My PCP was happy to add on the views to her order. Insurance had no problem paying for it. I had no problem with the imaging center I went to understanding what was requested. So from my perspective and my PCP's - and the imagine center's reaction - it did not seem like it was anything out of the ordinary.

My specialist was the one who referred me to Dr. Bolognese and assume he asked me to get done what he understood at that time was what Dr. Bolognese would want - as he fully intended to share my MRI imaging with Dr. Bolognese for him to rule out/in CCI/AAI.

This was well over 6 months ago so things may have changed.
 

Hip

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I was reminded that Dr Ritchie Shoemaker uses a low amylose diet and high-dose fish oil to treat the elevated levels of MMP-9 found in mold illness. Now MMP-9 is an enzyme which can weaken connective tissue, so conceivably MMP-9 might play a role in CCI, by weakening the ligaments around the craniocervical junction.

The low amylose diet is part of a 12-step plan Dr Shoemaker uses to treat mold illness (the illness that Shoemaker calls CIRS, chronic inflammatory response syndrome), see his protocol here: https://www.survivingmold.com/STEPS_OF_THE_SHOEMAKER_PROTOCOL_3.PDF

MMP-9 levels can be tested for (LabCorp for example offer an MMP-9 test). It would be interesting to know if those diagnosed with CCI had high MMP-9, especially patients with a history of mold exposure. And if high levels were present, then I wonder if a low amylose diet and high-dose fish oil might help ameliorate the CCI.

Other means of lowering MMP-9 and other connective tissue degrading MMPs are listed in this post.

Furthermore, it makes me wonder how many pure mold illness patients might have CCI, given that elevated MMP-9 may be present in mold illness? (ME/CFS patients may also have mold involvement, but usually there is viral infection as well in ME/CFS; so by pure mold patients I mean those exposed to mold but with no known viral trigger).
 
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Hello everyone,
My sister just had her upright MRI in London (Medserena) and she seems to have some modification - hindbrain herniation 7,2 mm, moderate CCI, AAI, C4-C5, C5-C6 - which are highly suggestive for hEDS. She was diagnosed with ME/CFS (severely ill now- Bedrriden, extremely intolerant to light, sound, smell). Could you help me with some piece of advice - where should we go now? I've sent her MRI report and her medical history to Dr G but it seems it will take a long time for a response because they have a very high number of patients now and they are before summer holidays.