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

[Wayne]

I think that the 'devil's advocate posts' from femto have (unintendedly or not) just made things clearer

Hi @Lisa108,

Thanks for your comment; that seems like an accurate assessment. However, it would have been nice if the devil's advocate had been a little kinder, gentler, respectful, and perhaps most importantly, more ACCURATE.​

 

[Mary]

The symptoms also don't list fatigue or PEM (only weakness, and it says that is less common).

I wouldn't rely on Mayo as the expert here or knowing anything about ME/CFS - it still recommends GET and CBT as therapies for ME/CFS despite being provided with ample evidence showing the failure and harm caused by these treatments, as well as being advised that the CDC no longer recommends GET and CBT. Mayo's ignorance is willful in this regard and somewhat astounding for such a renowned institution. so the fact that they don't mention PEM as a symptom of Chiari malformation is meaningless when they don't even know what ME/CFS or PEM are; otherwise they wouldn't persist in recommending GET for ME/CFS.

 

[Hip]

In my case: It took 30 pounds of sustained traction to eliminate my POTS and PEM and overall ME/CFS symptoms.

Any idea what's the maximum safe upward force in pounds or kilos that can be applied during these tests? I have been thinking for some years now of building my own contraption to apply an upward force to my head, in order th stretch the neck and see if this has a beneficial effect on ME/CFS symptoms.

I don't think I am in the Ehlers-Danlos category, as my bone structure and ligaments are pretty solidly built (an osteopathy once told me that he does not often see patients with such a solidly constructed spine as mine).

But it would nevertheless be interesting to explore this neck stretching angle.

 

[jeff_w]

I don't think I am in the Ehlers-Danlos category, as my bone structure and ligaments are pretty solidly built (an osteopathy once told me that he does not often see patients with such a solidly constructed spine as mine).

In my own case, I was muscular and athletic before getting sick and diagnosed with ME/CFS (PEM, POTS, etc). I would never have guessed I had any type of syndrome. I played sports in high school, and I pumped iron twice a week.

When I was recovering from my fusion surgery, still inpatient in the hospital, my neurosurgeon told me that I had a really strong spine. I guess he would know, having just drilled multiple screws into it.

So my muscles are strong, and my bone density is good. My physical strength gave the false impression of health.

Any idea what's the maximum safe upward force in pounds or kilos that can be applied during these tests?

I've heard of 40lbs being used by top neurosurgeons. They may use more in certain cases, but I haven't heard of more than that being used.

I have been thinking for some years now of building my own contraption to apply an upward force to my head, in order the stretch the neck and see if this has a beneficial effect on ME/CFS symptoms.

My guess is that the maximum safe force would depend on your degree of cranial settling. If you have zero cranial settling, then you'd want to apply less force to stay within the realm of "safe."

If you have severe cranial settling, then you will need a lot more force in order to alleviate symptoms, and the force necessary to do that would be safe, given that your ligaments would already be lax.

 

[Gingergrrl]

I have been thinking for some years now of building my own contraption to apply an upward force to my head, in order th stretch the neck and see if this has a beneficial effect on ME/CFS symptoms.

@Hip Would this be like a traction device to stretch your neck? How would you know how to build it safely on your own? I have had benefit from gentle traction in the past (and am in the process of trying to find a new chiropractor) but I'd be very hesitant to try something on my own, not under the guidance of a professional, involving the neck .

 

[Hip]

How would you know how to build it safely on your own?

Actually I just discovered there are ready-made neck traction devices available, like those shown here. This was the sort of thing I had in mind to build, but it seems you can buy them.

These devices attach to the top of a door, and use a pulley system to apply an upward force to your head. Some employ a plastic bag which you fill with water in order to create weight. One device I looked supplied 9 kilos (20 pounds) of force with the bag filled with water to its maximum capacity.

 

[jeff_w]

These devices attach to the top of a door, and use a pulley system to apply an upward force to your head. Some employ a plastic bag which you fill with water in order to create weight. One device I looked supplied 9 kilos (20 pounds) of force with the bag filled with water to its maximum capacity.

The over-the-door pulley traction has helped others with CCI. It didn't seem to help me much. But it could help you. I just needed more force than 20 lbs. It might be possible that cumulative 20 pounds of traction, repeated, would have had a benefit in my case.

What did help me, prior to my halo and surgery, was having people pull on my head while I was lying down. This is technically called "manual traction." I have a relative who is a physical therapist, and she taught my family how to provide this manual traction. It has to be done correctly in order to help, so it's great if you have someone in your life willing to learn and to do it.

Another thing that helped me -- prior to my halo and surgery -- was sleeping in a bed with the feet elevated, and my head down. This caused gravity to exert a constant mild traction on my skull. This helped lessen the severity of cranial settling and brain stem compression, until I was able to get a halo and then surgery.

This is technically called the "Trendelenburg" position. Here's a photo:

 

[jeff_w]

So, for what it's worth, I think that the 'devil's advocate posts' from femto have (unintendedly or not) just made things clearer, as Jeff was able to counter them all, passing ever more information alongside.

Thanks, Lisa! This thread sure has been active.

@jeff_w I'm very happy to hear that your progress continues. Please keep us updated!

I will keep everyone posted.

 

[sb4]

One device I looked supplied 9 kilos (20 pounds) of force with the bag filled with water to its maximum capacity.

I purchased one of those last week, should be delivered tomorrow. I figure we could just add more weight to it, assuming the pully holds. I intend to sit in it for at least a few hours and see if I notice any difference.

 

[Lisa108]

Hey guys, please start with low intensity! Especially, if you don't know (from MRI) about the condition and postition your muscles, ligaments, bones etc.are in...

 

[sb4]

So the door neck traction device arrived today and I sat in it for 1hr 20mins @ 10kg. I haven't really noticed anything much symptoms wise as of yet, this is disappointing as I would imagine it would have had an almost instant effect if this was contributing to my symptoms.

What I did notice was that it was very uncomfortable on my jaw. I remember a dentist telling me my jaw was set back as a kid so maybe that has something to do with it but it made the session very unpleasant. Moving the strap around helped somewhat.

Afterwards I noticed I needed to crack my head more and maybe my posture felt a little better but this could be my imagination.

I intend to keep on using it along with the increasing the posture stuff I've been doing over the last few months [goal of trying to spend any time when not sitting or laying, in the squat or hero pose]. I may experiment with heavier weight or pulling down on the rope with my arms if my jaw can take it. I have also purchased a posture pump for the neck for £18 but it won't arrive for a month. I figure this could stretch out my spine without the neck pain.

 

[Hip]

So the door neck traction device arrived today and I sat in it for 1hr 20mins @ 10kg. I haven't really noticed anything much symptoms wise as of yet, this is disappointing as I would imagine it would have had an almost instant effect if this was contributing to my symptoms.

When I did some neck stretching a few years ago using a setup cobbled together from household furniture, the benefits seemed to appear the next day, rather than during the stretch itself.

The benefits I found were better and more restful sleep, and more energy and enthusiasm for things (eg, I found I would sometimes spontaneously start a new project or new activity the day after neck stretching). Though these positive effects did not occur every time.

However, because I only tried neck stretching on around 10 different occasions over a period of around 4 years, these benefits (which I recorded in my health experiments diary) might just have been a coincidence.

 

[sb4]

@Hip Interesting you should say that. I just had a meal over an hour ago with decent amount of carbs yet I have had, so far, minimal palpitations afterwards. Could be random however I intend to keep this up with posture work and have just found a very local chiropractor for £40, might book an appointment.

 

[PeeWee]

After we read the early part of this thread & around the subjects of upper-spine / cerebro spinal fluid, etc., Elle signed up for Perrin osteopathy & she's now 6 sessions in. The therapist does some cranial osteopathy & moves her neck (& all sorts of other bits) about. Elle's sure it's making a difference & there are signs it could make a huge difference - a few hours after the last session she had a brief period (a couple of hours) where she 'felt normal' - she said it was the first time in 3 years or more she's thought it possible she might be able to get better.

 

[jeff_w]

So the door neck traction device arrived today and I sat in it for 1hr 20mins @ 10kg.

I just had a meal over an hour ago with decent amount of carbs yet I have had, so far, minimal palpitations afterwards.

Glad to hear this. From May, 2014 -- October, 2017, I had palpitations after eating, especially if I ate carbs. That was before my halo and surgery. Once my cranial settling from the instability was resolved, I no longer had post-meal palpitations or any remaining POTS symptoms.

So maybe your reduction in palpitations is significant, although I agree it's too early to know for sure.

I intend to keep this up with posture work and have just found a very local chiropractor for £40, might book an appointment.

I'd also strongly recommend getting an upright flexion-extension MRI, and then sending those images to a top neurosurgeon. They will give you your measurements, and let you know if you have CCI, Cranial Settling, Chiari, etc.

Getting their opinions won't lock you in to getting neurosurgery. You can get opinions and then wait and see, continuing with the traction if it's helping you.

My neurosurgeon has some people try over-the-door traction and physical therapy prior to making a decision on surgery. He says that people with "equivocal" or borderline measurements can sometimes avoid surgery by doing traction and physical therapy. He will only operate if conservative measures have failed, or if your measurements are extremely severe (as mine were).

I'd still recommend getting that MRI and knowing your measurements -- whether normal, borderline, "surgical," etc. My measurements were "surgical," where no amount of traction or physical therapy would have prevented the need for surgery. I was also 100% bedbound by that point.

So we did manual traction, and bed traction, to tide me over until halo and surgery.

@sb4 - I look forward to updates, to see how you're doing with this, if you want to keep us posted.

 

[sb4]

Once my cranial settling from the instability was resolved, I no longer had post-meal palpitations or any remaining POTS symptoms.

I had been meaning to ask you. you say "once my cranial settling was resolved", was this an instantaneous thing, like you applied the right amount of traction and *poof* your symptoms are gone, or was it a case of a few days of the right amount resolved your symptoms?

I'd also strongly recommend getting an upright flexion-extension MRI

Yeah I really want to get this down however I'm going to have a real hard time getting the go ahead. My GPs are next to useless, and the only CFS type doctor I'm seeing is in 5 months time, and last time I was there my appointment was around 5minutes as they were very behind scheduel. I intend to bring it up to all the doctors I see but I doubt I will get anywhere. Hopefully doing this stuff enough over the next few weeks will make a difference enough that I can have some idea whever this is my problem or not.

@PeeWee That is very promising.

I used the device 3 more times yesterday, for 25/20/10 mins with breaks in between. I managed to significantly reduce the pressure on my jaw by playing around with the straps placement and on the hooks used. I found once I do this I can't be in it for much north of 20mins without it become quite uncomfortable on my neck. When I end the session my neck feels very warm for like a minute, possibly from blood rushing to area but could also be an inflammatory response triggered in order to repair disks. My neck feels very stiff(???) and I need to crack it. Not really noticed anything else as of yet.

 

[dreampop]

@jeff_w One thing I wanted to ask - I reread the thread but didn't see you mention how your fatigue is doing (or maybe I just missed it completely)?

 

[jeff_w]

@jeff_w One thing I wanted to ask - I reread the thread but didn't see you mention how your fatigue is doing (or maybe I just missed it completely)?

My fatigue is gone.

 

[Rachel Riggs]

I am having some very disturbing neurological symptoms from certain neck positions, mostly lying down with a pillow, other times slouching in bed with my neck at a particular angle. This has been occurring for 3 years now and seems to be progressing - the symptoms are frightening...

Dr. Kaufman is exploring the possibility of cranial cervical instability.

I just had a phone meeting with him today, but am having a difficult time finding an imaging center in San Diego to do a standing MRI.

Any insights of any kind are appreciated - THANKS!

 

[Rachel Riggs]

@jeff_w

Are you a patient of Dr. Kaufman's??

I just finished a phone meeting with him, and obviously he couldn't give me your name, but he told me to look for your story on PR.

He is exploring this as a possibility for me, and I must admit, just seeing the pics above, I am scared s***less!!

First step for me is locating a standing MRI in San Diego - so far no luck...

I would appreciate any advice you have to offer, thank you!