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

[Daffodil]

He told me to do traction only with the pt. Pts are very different than chiropractors. Traction is part of his diagnostic process

wow. I called gilete and to do a halo trial for 3-5 days there, it is like 8 - 13K euros.

honestly, if my diagnosis wasn't to get my entire neck fused, I would feel a lot better about this whole thing

 

[frozenborderline]

wow. I called gilete and to do a halo trial for 3-5 days there, it is like 8 - 13K euros.

honestly, if my diagnosis wasn't to get my entire neck fused, I would feel a lot better about this whole thing

Bolognese does invasive cervical traction as a test if the response to regular traction is more equivocal. I believe it’s covered by insurance

 

[Daffodil]

Bolognese does invasive cervical traction as a test if the response to regular traction is more equivocal. I believe it’s covered by insurance

I see. I don't have insurance. I cant jump into anything even if it were unreasonable because it would be 100K to do the surgery...

 

[frozenborderline]

I see. I don't have insurance. I cant jump into anything even if it were unreasonable because it would be 100K to do the surgery...

That’s unfortunate. Are you sure that travelers insurance cannot cover this? Have you considered crowdfunding?

 

[Daffodil]

That’s unfortunate. Are you sure that travelers insurance cannot cover this? Have you considered crowdfunding?

I am sure. there are endless stories online of people with EDS who couldn't get surgery covered here..same with the UK. (i am pretty sure i dont have EDS)

I have considered crowdfunding but I just cannot bring myself to put all my info out there.

its sad because my extended family has been anything but supportive, even though they have so much money. my first cousin is actually a prominent neurosurgeon in the US

 

[frozenborderline]

Well, if your extended family has money and Gilete wrote a medical report saying you need This surgery, it might be worth a try

 

[Daffodil]

Well, if your extended family has money and Gilete wrote a medical report saying you need This surgery, it might be worth a try

it doesnt work, i have tried it years ago. they will tell me the doctor is a quack, just wants money, etc. they have always thought, deep down, that i am faking or it is psychological. also, since canada has free health care, they would tell me to see a lawyer and get it paid for. if i tell them it is not a recognized condition here, they would again tell me it is nonsense. if i tell them my brain stem is being compressed, they would say that if harvard trained neurosurgeons say my scan is normal, then it's normal and i am imagining it or reading too much and getting obsessed. its just how it always goes

 

[brenda]

I have just begun taking notice this past week, about the discussion on EDS, CM, CCI etc. I am wondering whether it would be worthwhile to broach the subject of seeing someone about EDS with my GP as it seems to answer a lot of things in my 69 years of life. I don't have the headaches or dizziness, though I have suffered them at times in my life and had vertigo during the begining of my 1st pregnancy that made me give up work. Neck pain has been there for a long long time and worsens when I tilt my head back and makes it very difficult to find a comfortable position to sleep in. I seem to have to prop myself up using a hand under my face and other arm twisted at the wrist for support. I was more flexible earlier in life and could put my palms down on the floor with straightened knees. Even now, I seem to have more agility than others my age.


I also have pretty bad joint pain especially in the upper body, where there is extreme weakness and pain in the arms and hands. Looking at my FOO, there were 2 deaths, mother and her brother with aortic aneurisms and I am now motivated to ask for a scan for that. Skin is saggy, soft and velvety. I blackout when I vomit but thankfully have not done so for a few years now. No investigations due to living in the UK. I have sinusitis, terrible insomnia, MCS, MCAS and have had cornea errosions for a time also sleep apnea which went away with paleo diet.

I have scoliosis and kaphosis both mild I think though have not been assessed.

I have many food intolerances and cannot use medications. Not sure how I would manage to have an operation. I also stopped breathing during a dental procedure with nitrous oxide and had to be resuscitated. Not looking for a diagnosis just some indication as to whether it all sounds a bit like it. Thank you!

I have joined the Facebook group.

 

[rainbowbluebells]

Hey, everyone, I have not been on here for a good few years, I am not much of a frequenter of forums, but I have obviously been aware of Jeff's surgery through Jennifer Brea's commentary and her own publicised (at least, on social media) recent surgery for CCI. Jeff's experience sounds horrendous and I am truly happy for him he has found himself symptom-free after his gruelling journey of CCI diagnosis followed by surgery.

What brings me here is that today I saw someone on Twitter link to this PR thread, someone (Truthseeker) who was voicing concerns to Jennifer Brea: this tweeter seemed to be concerned that some pwME were being led to believe that CCI surgery might put an end to POTS, brainfog etc.

I just want to say - as someone diagnosed with Ramsay ME in UK in 1983 post-Coxsackie B4 by ME specialist/cons neurologist Peter Behan - that I think we should be very cautious and perhaps consider that these very frightening brain compression problems are scarily MIMICKING symptoms of ME rather than CAUSING actual ME. In the UK, for example, Chiari has to be *ruled out* before ME is diagnosed, please see differential diagnosis from recent ME Association clinical guidelines (2018).

View attachment 30473


Since Chiari has to be ruled out before a diagnosis of ME is made, I would imagine the same goes for CCI?

Today, I remain ill after 36 years of ME. And it concerns me a little that because of Jennifer's and Jeff's experiences of CCI that some with ME are perhaps now alarmed they have CCI, or similar, and also seeking neurosurgery tests/surgery unnecessarily. Of course, if one develops further new frightening symptoms, as both Jeff and Jennifer did, further investigations should be made. But troubling neck issues are also simply part and parcel of myalgic encephalomyelitis. That is a fact.

Jeff himself says in an older post that: 'I think many of us who have been diagnosed with ME/CFS/SEID actually have these neurosurgical issues'. But he has also on Twitter been advocating for an awareness of 'structural ME'. My many years of ME experience/advocacy tell me that ME is not structural and that we should be educating about possible misdiagnosis rather than comorbidities of brain compression issues with ME.

To be clear, I am not saying Jeff and Jennifer never had ME, I cannot possibly know that, but if a surgical procedure resolves all of one's symptoms should misdiagnosis not at least be considered?

Thank you for reading.

Hi, I live in the U.K. also, and the M.E association is a U.K charity that publishes what it thinks *should* be done - not what is *actually* done unfortunately. The NICE guidelines (UK health guidelines) do not state that Chiari Malformation or CCI should be ruled out as far as I know. I, myself, was tested for a bunch of autoimmune conditions via blood test - I was found to have lupus but due to all my other M.E/CFS symptoms, was also told I have “chronic fatigue”. I have every single M.E stmptom, also come under the M.E international consensus criteria, and have never been offered a single MRI scan or neurological examination. I now have to pay privately to get these scans done to rule out CCI and I think everyone who is diagnosed with this condition should do the same if they can.

 

[Daffodil]

i have had such a bad week both physically and psychologically, that i went to the extra extra extreme step of contacting my father for help. i was turned down. that was my last reasonable option. my poor mom is willing to do anything and will even get a second mortgage on the tiny condo we live in...but could be in danger of being homeless then. this is going to be a big huge decision because even with surgery, there is no telling what could happen, but at the same time, my life is pretty unbearable now.
:::sigh::

 

[Wayne]

makes it very difficult to find a comfortable position to sleep in. I have sinusitis, terrible insomnia,

Hi @brenda -- A neighbor of mine who got the AtlasPROfilax done [unique atlas repositioning technique] said that he was able to--that very same night--sleep laying down for the first time in several years. He usually had to prop himself up in a particular position in a chair to be able to sleep.

After my sister and nephew got their AtlasPROfilax treatments, they were both amazed at how much their sinuses cleared within just a couple of hours. -- A friend who had the AtlasPROfilax done said that when he went to sleep that first night, he awoke in the exact same position he went to sleep in. He had normally not slept particularly well.

I'm mentioning this because I think it's likely a lot of symptoms of CCI that people may be experiencing are not necessarily a result of having CCI, and various other treatments may provide some relief.
--
The AtlasPROfilax technique primarily involves doing some deep massage (with an electronic massager) behind the ears, especially the right ear. This methodical vibrating motion releases the muscles, tendons, and ligaments that hold the atlas out of place.

It's generally a one-time adjustment (costs $250), and mine held up well for about 10 years. After I had a severe reaction to an anti-nausea drug a year ago, my adjustment no longer held. When I had it redone, it only held for about 2 days.

Since then I've discovered I'm able to maintain my adjustment (repositioning) by regularly (1x-2x daily) deeply massaging along the boney ridge right behind my ears where the AP practitioner does most of his work--again, especially on the right side. If anybody tries this, they will likely find a lot of these areas quite tender. But if you work on it regularly, these tender areas can generally be worked out in a short while (couple weeks or so).

Once I started doing this regularly (about 2 months ago), the neck pain that often kept me from being able to walk very far subsided by 90%+. I also noticed an almost subliminal increase in the curvature of my neck. Much more noticeable was that my pectoral muscles on the front of my chest felt much more supportive, and I noticed I was walking more upright than I had previously.

I don't know how well self-massage in this particular neck area would work for others, but it might be worth considering. And the cost is just about right!

 

[GypsyGirl]

@Wayne May I ask if you remember what kind of practitioner did AtlasPROfilax for you? (Like a chiropractor, MD, etc)

And if they talked to you about what makes it different than other types of manual release?
The only (and very curious) difference I notice straight off is that AtlasPROfilax advertises it as a one-time application. Otherwise it looks the same as techniques & tools used by manual therapists like chiropractors, osteopaths, and physical therapists: massage soft tissue and release inappropriate tension and reset subluxations or retrain maladaptions. The website mentions vibrational massage as a distinguishing factor, but other manual therapists can use some vibrational massage. A single visit (or only a few) sounds too good to be true when other therapies take many visits!

Wild that the first adjustment held for a decade.

 

[brenda]

Thank you @Wayne that is very interesting and helpful. That device sounds like it would be useful. I have been doing some upper body muscle tension release before sleeping and it does help me to get off quicker and sleep longer. I found out a long time ago that my neck area is exquisitely tender and if l find the tenderest spots in pressing, and hold the pressure for a few minutes, it seems to help. I read somewhere that it is a good thing to do.

I can lie down and the propping up is just a matter of finding the right position and the right pillow and raising things a few centimetres.

I am wondering about using my spooky2 red light laser there as well. Once or twice l have tried having some light massage from a therapist but it was always too much and l was ill the next few days.

I can't believe how l managed to miss this.

 

[Daffodil]

check out this article! ligament laxicity in the cervical spine associated with IBD!! and a case where a person underwent fusion but the ligament laxicity wasnt recognized!

file:///home/chronos/u-8baa349017881ac26539869e991535ca7217fb4a/Downloads/[10920684%20-%20Neurosurgical%20Focus]%20Inflammatory%20bowel%20disease%20and%20the%20craniocervical%20junction.pdf

most of us had IBD before the CFS i think! maybe we had some kind of sub-clinical underlying ligament situation going on in our spines! and then something happened to cause enough laxicity to make a difference in the pressure on the brain stem! or something

 

[Wayne]

@Wayne May I ask if you remember what kind of practitioner did AtlasPROfilax for you? (Like a chiropractor, MD, etc)

Hi @GypsyGirl -- Last I heard, there's only about a dozen or so AP practitioners in the U.S. Most are massage therapists, cranial sacral therapists, etc. Only one that I know of is a chiropractor, who's located in Minneapolis (contact info below). I had it done by a cranial sacral therapist, and believe he does a good job. However, I wouldn't be as confident in his abilities if I was trying to get some insight into whether I was experiencing CCI.

That's where I think the chiropractor who does this in Mnpls. would be my recommendation and my own preference. He's the one I took my sister and nephew to. He also did a unique and highly beneficial axis adjustment on my neck that I'd never experienced anywhere else. So I rate his overall skills quite highly.

The only (and very curious) difference I notice straight off is that AtlasPROfilax advertises it as a one-time application.

This 7-MIN video--Video: The AtlasPROfilax® method (English version, March 2012)--has some very good visuals (no audio) on the whole upper neck area, including the atlas and the axis, the first two cervical vertebrae. It has no audio, but slowly describes the anatomy of the upper neck area(s). Once you get to about the 2-minute mark, you'll notice a couple of smallish, orangish dojiggies. AP practitioners call these "pins", and they say adjusting the atlas properly relative to these pins is what makes it so unqiue and long-lasting.

They say those pins essentially lock the atlas back into place. They say it's more accurately described as a "repositioning" instead of an adjustment. They also describe it this way: Like a boulder, it's not particularly easy to move it into position; but also like a boulder, it's not particularly easy to move it back out of place. It does happen, and I read one account of a woman who had it go back out of place from horse back riding. I don't recall whether she was willing to give that up.

I live on the west coast of the U.S., and my AP practitioner was from California. He said he regularly had people fly out to see him from all over the country. For anybody interested in having this done by someone with professional credentials and qualifications, I don't think you could go wrong with seeing Brian Elijah in MN. He's kind of nicely centrally located as well.
.............................................

Dr. Brian Elijah D.C. - Bloomington, MN

The blurb below is at the link above...

AtlasPROfilax® is a unique, European technique that moves your atlas bone into its correct and natural position. The atlas bone (or C1) is the gateway from your brain to your body. Your vagus nerve, central nervous system, immune system and digestion function better when your atlas is in its natural position. Enjoy less pain, more energy, range of motion, flexibility, balance, better sleep and moods.

 

[Wayne]

I found out a long time ago that my neck area is exquisitely tender and if l find the tenderest spots in pressing, and hold the pressure for a few minutes, it seems to help. I read somewhere that it is a good thing to do.

The self-massage I'm doing is working really well, but I'm beginning to learn self-acupuncture so I can go even deeper into the nooks and crannies of my upper neck area. It appears to be an area that has a number of nerve ganglia, and affects so many energetic and neurlogical functions, including cerebral/spinal fluid rhythms.

It appears to affect vagus nerve function as well. From my own expereince, when my neck is better supported and aligned, I feel a stronger connection with myself, with nature, and the world at large. -- Even makes me feel ready to stick around this world a little longer. -- Which has not always been the case.

 

[brenda]

Yes I can see how a better supported neck @Wayne can make one feel more connected with everything and with your last sentiment .

I can remember how I felt when I was in Germany for light proton therapy and the therapist examined me and asked if I knew that one leg was shorter than the other. He advised a chiropractic manuever that he had learned in Sweden and as he had many qualifications on the wall and had been highly recommended, I allowed him to do it and wow - I could barely believe the relief I felt in my neck which unforunately only lasted a few weeks..

I tried to find a chiro in my own country but the manuever was not being widely used - insurance purposes I guessed. So I began to look into acupressure and bought a book which I have just retreived. It was to ease the pain in my hands but did not help much and now I know why - it is coming from my brain stem.

I think though that I would not try AtlasPROfilax® until I get a standing MRI and the go ahead from a neurosurgeon. But for now, I agree that here are things to help and I am looking them up atm. Doing the acupressure thing seems to be something very useful and an exercise a surgeon told me about regarding posture - stand next to a wall with feet against it and raise the arms above the head stretching to align them with the wall.

Very pleased to hear that you have found help though.

 

[Remi]

Anyone try the neck saviour?

 

[GypsyGirl]

@Wayne I will check out that video!

I'm in the process of trying to figure out what kind of manual therapy would be a good adjunct to my physical therapy since I deal with frequent subluxations and PT alone isn't cutting it. I've had some good and bad manual manipulation... the bad gets a lot of attention (understandably so), but the good has helped me a lot in the past. I suspect AtlasPROfilax® is inappropriate with my particular risk profile, but it'll be a useful learning exercise to look into it either way.

I'm so glad you had a good experience, and thank you for sharing in such detail!

 

[Daffodil]

after that one good adjustment i had with the atlas orthogonal, i reported here about how, the next day, my sinuses started to clear. i was again trying to find papers or testimonials online about cervical stabilization and i came across an article (i cannot find it now) that said that many patients experience sinus clearing as a first improvement.

i also reported many times on PR that over 10 yrs ago, i saw a prominent ENT specialist in manhattan who said my sinus inflammation appears to be coming from "trigger points" in my neck.

i am becoming more and more convinced that CCI could really be the problem for me