• Phoenix Rising needs funds to operate: please consider donating to support PR

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

Messages
93
Likes
155
Hi Bowser. But if you do have a venous flow problem, wouldnt it be because of CCI? what causes hyperplasia? is it congenital?

Yes, Dr. Gilete's office is a problem to get in touch with by email but not by phone. If you call 2 or 3 times, Amy will answer. I would not wait for email.
I mean, those are all good questions. I hope Dr. G can answer them. It really depends on whether my possible CCI and AAI diagnosis can materialize into something more concrete. Maybe the hypoplasia will receive a separate diagnosis. Which of these is causing the symptoms is hard to say.

Thanks for the tip about calling the office. I shall try that in another week.

lol yea i used to laugh at chiropractic too but not anymore. I did atlas orthogonal for 5 weeks 6 months ago and after the 4th adjustment, I felt my sinuses open. This means something because I read that after fusion for CCI/AAI, that is often the first thing patients notice.

Of course this will not be a substitute for surgery...might give me partial improvements....hope it doesnt make me worse. They very gently move your skull so that you do not feel it and they try to align it. They take X-rays and measurements and whatnot. It takes a long time. A board member named Wayne improved significantly with chiropractic but he did Atlas Profilax which I find scary.
That is quite interesting. Feeling sinuses open seems like quite pertinent feedback. I myself experience some degree of facial pain and a feeling as if sinuses are heavy and obstructed. My whole face often feels like it is filled with lead.

I haven't heard of Atlas Profilax. Might read more about that.

Really hope this works for you.
 

Jyoti

Senior Member
Messages
234
Likes
826
Atlas Orthogonal gave me profound relief. Miraculous, even, the first couple of adjustments. After a couple of months, though, the effects diminished. I am not quite sure what to make of that. But it was glorious, to see and think clearly, stand with no dizziness, walk briskly and easily, actually feel the energy flowing unimpeded through my body. It was incredible. It reminded me of who I was before I got sick.

I don't know why the adjustments didn't hold (though I suspect lax ligaments, of course) and I don't know how it might work when you are also dealing with the venous flow issues. But I am really glad I tried it out.
 

Wayne

Senior Member
Messages
3,782
Likes
5,634
Location
Ashland, Oregon
A board member named Wayne improved significantly with chiropractic but he did Atlas Profilax which I find scary.
Atlas Orthogonal gave me profound relief.

Hi @Daffodil -- Regarding safety, a good friend of mine was considering getting the AtlasPROfilax "repositioining" done, but she was very concerned about a problematic jugler vein that had been operated on the year before, and her doctor told her to NEVER have a chiropractic adjustment. While the AP practitioner was at our house, she stopped by, sat down, tuned into her body (and I believe her guides), and the energy in our home, and immediately knew it would be a totally safe thing for her to do. It turned out to be a very beneficial treatment for her, I think primarily because she felt it supported her energetic field(s).

I feel the AP repositioning is actually far safer than traditional chiropractic "popping" techniques, and more effective than the gentle NUCCA techniques (I did NUCCA for many years, getting relief, but always needing regular adjustments). I'm not trying to criticize these techniques, because they do work. They just didn't work for me longer term. I should add however, that AP didn't "cure" all my structural ailments. I still continue to look for various techniques to address and help stabilize my structural issues. Nasal Specific and Egoscue techniques are high on my list of things that have helped me considerably.

That is quite interesting. Feeling sinuses open seems like quite pertinent feedback. I myself experience some degree of facial pain and a feeling as if sinuses are heavy and obstructed. My whole face often feels like it is filled with lead. ...... I haven't heard of Atlas Profilax. Might read more about that.

HI @Bowser -- I think THIS POST is a good starting point for checking out some of what I've shared on my AtlasPROfilax experiences. Below is a snippet from that post which touches on a common experience of sinuses clearing after getting the treatment (which in general is more gentle than regular chiropractic).

"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."​
 
Last edited:

JES

Senior Member
Messages
1,051
Likes
2,344
I visited an AtlasPROfilax practitioner around a month ago. The good news, the treatment didn't make me worse, which I was a bit fearful of following the recent linking of CCI to ME/CFS. The pressure that the practitioner applied with the massage device was quite hard and somewhat painful. I'd imagine someone with CCI and brainstem compression could react very badly to this form of pressure applied to the upper neck. To me, this experience was useful in that it strengthened my hunch that my symptoms are not due to CCI, but for someone like Jen Brea who suffered from severe symptoms even when rotating her head, applying this kind of force to the neck could be very dangerous.

Anyway, the less good news, the treatment made no difference to how I felt except for my neck muscles feeling a bit more relaxed and somewhat sore to pressure for the next few days. I disliked all the bundled hype that came along the procedure itself. My arms and legs were "measured" before and after treatment and, supposedly, my right leg was longer than the left, but had mostly fixed itself when re-measured five minutes after the message. I felt no need to comment on it since it all felt so absurd. Anyway, as this was and is a one time procedure, at least there is no continuous needless visits to be done, but it was still a rather expensive experiment for no effect.

Atlas Orthogonal gave me profound relief. Miraculous, even, the first couple of adjustments. After a couple of months, though, the effects diminished. I am not quite sure what to make of that.
Having researched patient stories before committing to the procedure, this is what I often read was reported. It makes no sense to me, since the treatment is supposed to permanently re-align the atlas to its correct position. So either a) the science about the treatment re-aligning the atlas permanently is wrong, b) the treatment is working through some other effects than atlas re-alignment or c) it's mostly based on placebo.
 
Last edited:

Daffodil

Senior Member
Messages
5,673
Likes
6,038
on youtube a woman with head pressure and brain fog says she is a lot better with AO and also i found other testimonials from people , one woman saying she is still tired but can at least read books now. i think they went for month months and slowly improved. probably have to keep doing it.
 

Daffodil

Senior Member
Messages
5,673
Likes
6,038
@Wayne you did NUCCA for years?? what made you do that? CCI wasnt even in the media as a possible cause of this disease? impressive that you did it on your own

Yes i do expect i will have to keep doing NUCCA and just deal with the partial improvements if I am lucky enough to get them. ..until /if some miracle happens and I can afford surgery

would you say that the improvements you had doing NUCCA were comparable to the improvements you had with AP?

Some people think stem cells to ligaments make adjustments hold longer
 

Jyoti

Senior Member
Messages
234
Likes
826
It makes no sense to me, since the treatment is supposed to permanently re-align the atlas to its correct position. So either a) the science about the treatment re-aligning the atlas permanently is wrong, b) the treatment is working through some other effects than atlas re-alignment or c) it's mostly based on placebo.
My 16 year old daughter went for a series of AO adjustments and I think her treatment followed a more 'normal' course. (Surprise, that....) The first three times (a week, a week and a half, two week intervals), her atlas was out of alignment and needed re-aligning. Then she went a month where it stayed put. After that it extended to six weeks before she needed another adjustment and finally she was able to hold the adjustment for two months and we decided to return only for tune-ups if she felt it was necessary.

Now Atlas Profilax promises that it can align the atlas for good in one or two treatments, I believe, but Atlas Orthogonal does not make that promise. I was told to just keep at it and eventually it would hold, but it didn't happen for me. Again, I suspect that this was at least in part because of ligaments that were not functioning well.

However, I cannot explain why it would be so dramatic at first and then wane in effect over time. I was, though, expecting little or nothing from the first adjustment and the shift was stunning. As I have worked with traction since, I note the same kinds of effects physiologically. So I do believe that something lined up and allowed for much better function in the adjustment.
 

Daffodil

Senior Member
Messages
5,673
Likes
6,038
My 16 year old daughter went for a series of AO adjustments and I think her treatment followed a more 'normal' course. (Surprise, that....) The first three times (a week, a week and a half, two week intervals), her atlas was out of alignment and needed re-aligning. Then she went a month where it stayed put. After that it extended to six weeks before she needed another adjustment and finally she was able to hold the adjustment for two months and we decided to return only for tune-ups if she felt it was necessary.

Now Atlas Profilax promises that it can align the atlas for good in one or two treatments, I believe, but Atlas Orthogonal does not make that promise. I was told to just keep at it and eventually it would hold, but it didn't happen for me. Again, I suspect that this was at least in part because of ligaments that were not functioning well.

However, I cannot explain why it would be so dramatic at first and then wane in effect over time. I was, though, expecting little or nothing from the first adjustment and the shift was stunning. As I have worked with traction since, I note the same kinds of effects physiologically. So I do believe that something lined up and allowed for much better function in the adjustment.[/QUOTE
i have heard of this happening too, many people say AO was great then they plateaued and had to try some other technique. I dont get it. maybe over time, other parts of the cervical column start having problems and treating just the atlas isnt enough. i do know someone who had surgery, did well, but then started having some issues again due to adjacent joint issues.

so your daughter.....does she live a normal life now??
 

Wayne

Senior Member
Messages
3,782
Likes
5,634
Location
Ashland, Oregon
I suspect that this was at least in part because of ligaments that were not functioning well.
Hi @Jyoti -- I think the whole ligament thing is a big part of what separates NUCCA from AtlasPROfilax. My experience with Atlas Orthogonal (NUCCA) was very similar to your daughter's. I started out getting it done fairly often, then fell into a "maintenance" regimen, of perhaps once every 1-2 months. I finally stopped after I moved away from my regular practitioner, and was unable to find one that was as good as my original one.

So I went a few years with no NUCCA adjustments at all. And then I discovered AtlasPROfilax. As I explained in earlier post (snippet below), it held for 10 years until I had a severe reaction to an anti-nausea drug, after which my atlas would no longer hold. I had the AP redone, and felt enormous relief--for about two days--until it went out again. I then had it done again, again with the same results.

It was at that point where I decided to try to replicate what the AP practitioner did/does. I describe that in the quoted text below, and I'm now able to consistently keep my neck stabilized by doing just a couple minutes of focused massage on the areas where the AP practitioner works. I consider this to be an extraordinary discovery, one that I feel virtually anybody should be able to replicate. All it takes is committing to doing it for a couple or so minutes a day (perhaps more in the beginning). -- Thanks for your post...

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.

@Wayne you did NUCCA for years?? what made you do that? CCI wasnt even in the media as a possible cause of this disease? impressive that you did it on your own. ...... Yes i do expect i will have to keep doing NUCCA and just deal with the partial improvements if I am lucky enough to get them. ..until /if some miracle happens and I can afford surgery. ...... would you say that the improvements you had doing NUCCA were comparable to the improvements you had with AP? ...... Some people think stem cells to ligaments make adjustments hold longer

@Daffodil -- My chronic neck problems began with a serious head injury/whiplash at age 15. I suffered from chronic headache and neck pain after that, and eventually got to the point where I couldn't do sports like basketball, or running, both of which I had engaged in for years. I went to various chiropractors for years, who used various different kinds of techniques, getting various degress of relief, but occasionally getting exacerbation of symptoms as well. I gradually began to distrust anything but gentle manipulative techniques.

I eventually found a practitioner who did the NUCCA, and based on the immediate results, knew this was a step above all the other Chiropractic techniques I had done because of how it began to significantly affect some of the major problems stemming from my neck area--including debilitating fatigue. I eventually discovered the AP technique, and now consider that a step above NUCCA, in that it generally only takes a single session to get the atlas to "lock" into place.

Though I can't explain the details of the differences, my thoughts are that the NUCCA and AP techniques are somehow different in their approach and goal(s), and thus have different results. AP practitioners like to say that what they do is "reposition" the atlas. And that it's somewhat like a boulder; not particularly easy to move into place (without a fair amount of the loosening of ligaments, tendons, etc.), but also not easy for it to move back out of place. I did read of one woman who had it come out place, but it was because she did a lot of horseback riding, and didn't want to give that up.

A suggestion/recommendation for anybody who has, or suspects they have CCI/AAI, or some other degree of cranial instability, and decides to look further into the AtlasPROfilax technique. There's only one practitioner I'm aware of in the U.S. that is both an AP practitioner and a licensed Chiropractor (and ND as well). His name is Brian Elijah, and he works out of Minneapolis. I've met with him on a couple of occasions, and would highly recommend him. Mnpls is centrally located, so would be relatively easy to fly into from just about anywhere in the U.S. or Canada.

I don't want to say anything controversial, but from my experience and understanding of what AP can do, I've come to believe most people who have CCI/AAI should carefully consider doing that before going through a major CCI surgery (not recommending it, just suggesting it). It may seem counterintuitive that a relatively low-cost, fairly obscure technique would be a better solution than an expensive, more widely known surgery, but I think it's worth a very close look. -- Regarding @JES's concern that the AP may be too much for someone with CCI, I think this could be discussed with him, and somehow ascertain how much he's aware of these kinds of issues, and how he works with them.
 
Last edited:

Jyoti

Senior Member
Messages
234
Likes
826
@Daffodil -- My daughter was getting AO for mental focus, and having her atlas in place helps with that. I imagine that her atlas was out forever--she had a lot of trauma around birth. But still, not so long when compared to my misalignment. Or yours, I suspect. Anyway--it helped her I think the way it is designed to.

When I think of your possible explanation --other parts of the cervical/spinal column start having issues and the atlas cannot hold without that solid base to balance upon--it makes some sense to me. I was pondering and remembering a time twenty years ago when I saw an excellent osteopath for a long-standing problem in my lower back. He told me it would take 3 years of regular treatments to 'cure' and it did and it was. Cured, that is. His explanation was that tendons and ligaments take a long time to shape shift, to change their length and contour. Unlike muscles.

He could guide my body to put things in right order but very quickly, the default length of the ligaments and tendons would pull my sacrum back out of alignment. Over the course of three years, he patiently coaxed those connective tissues so that they both were of equal length and I have been fine since. But I think about it --it applies perhaps to this question of the atlas holding: one side of my sacrum was initially hitched up because the ligament was too long and not keeping it in place, the other side was pulled low by ligaments that were responsively too tight.

It seems reasonable--at least for those of us without serious connective tissue issues--that a poor default head/neck position could result in some very loose and some very tight ligaments. Or be caused by same. But either way, put the atlas back in place and at first there is great rejoicing in the neck and then whatever ligament is too short is going to pull the head back into its favored position.

And there are so many other pathologies in the neck for many of us. I know that with CCI surgery there are some concerns that even if the top two vertebrae are stabilized, the instability may transfer down the spine over time. Why couldn't that happen with with an atlas re-placing?

All supposition, and I apologize for it. Sometimes I just want to figure it out and so I flail about.

@Wayne, I had read your posts about AP before, when I was first trying to decide about AO or AP or NUCCA. They were helpful; thank you. For me it ultimately came to the practitioners I had access to and so I ended up with AO. But I really like the notion of repositioning the atlas--I can see how it might be difficult to achieve but also difficult to undo. It might be a next step for me.

And now, off to massage behind my right ear!
 

Wayne

Senior Member
Messages
3,782
Likes
5,634
Location
Ashland, Oregon
And now, off to massage behind my right ear!
:thumbsup: :thumbsup: ;)

When I think of your possible explanation --other parts of the cervical/spinal column start having issues and the atlas cannot hold without that solid base to balance upon--it makes some sense to me. I was pondering and remembering a time twenty years ago when I saw an excellent osteopath for a long-standing problem in my lower back.
@Jyoti -- I'm a big believer in the Egoscue philosophy that symptoms that occur in one joint may actually be starting one or two joints away (possibly more). All these joints are interconnected, which is why I'm constantly looking at any techniques that will help my overall structural issues.

I recently made a few posts on a couple of other techniques I'm doing that I think are almost certainly adding a LOT of stability to my neck area (in addition to the self-massage I use that emulates the AP).

Below is a link to a post I made on a thoracic extension exercise, and a pelvis stabilization technique. The results I've gotten and am still experiencing have stayed with me for several months now. And I'm continuing to seeing improvements, especially in my physical stamina (mental/cognitive stamina is another thing however).

grounding wrist strap, elevating my head & a few other things helping a lot with sleep

THIS POST in that same thread is very complementary to our whole discussion here.
 
Last edited:

Daffodil

Senior Member
Messages
5,673
Likes
6,038
@Jyoti @Wayne thanks for being so forthcoming. I am unable to remember much of what I read so hope you dont mind if i private message you to ask you more questions...

because the patients who go to dr gilete usually cannot afford to have repeated surgeries, he often fuses many levels at once....he suggested C0-T1 for me
 
Messages
93
Likes
155
Has anyone gone through with an ophthalmology test and got diagnosed for papilledema? It’s one of the tests that Dr. Gilete recommends. Papilledema is the swelling of optic nerve due to inter cranial pressure.

I’ve got computer eye strain issues since childhood so I’m wondering if it might be related.
 

Daffodil

Senior Member
Messages
5,673
Likes
6,038
@Wayne why is it that even after the AP success, you still would not consider yourself in remission? i mean....did you ever make it close to total recovery before things changed again?

but then again, even with fusion, after being sick so long, perhaps total recovery isnt possible for many of us.

any thoughts?
 

Cinders66

Senior Member
Messages
458
Likes
1,901
I think that whitney dafoe has had some investigation for this type issue? Anyone know if anything was found.?. Sorry if it’s an intrusive question it’s just to see if very severe m.e can exist without this type of thing - leaving the obvious question of why is it so incapacitating.

There’s someone on Twitter with the diagnosis of very severe MEand a type of EDS who has a diagnosis of cervical instability and has recently had in her case absolutely life saving surgery to do something about it because she was getting extreme symptoms. Fortunately she found a dr in the uk To operate , where I’ve not heard so far of anyone else going down this route with m.e - probably because a of the nature of our healthcare system. Obviously the hope is to relieve horrendous CCI /EDS symptoms but It will be interesting to see if there is improvement of function as well.

Am I right in thinking IOM were investigating this avenue?. I just wish we could have $50m injected in to Key areas of research interest, including this, with urgency.
 

Daffodil

Senior Member
Messages
5,673
Likes
6,038
I think that whitney dafoe has had some investigation for this type issue? Anyone know if anything was found.?. Sorry if it’s an intrusive question it’s just to see if very severe m.e can exist without this type of thing - leaving the obvious question of why is it so incapacitating.

There’s someone on Twitter with the diagnosis of very severe MEand a type of EDS who has a diagnosis of cervical instability and has recently had in her case absolutely life saving surgery to do something about it because she was getting extreme symptoms. Fortunately she found a dr in the uk To operate , where I’ve not heard so far of anyone else going down this route with m.e - probably because a of the nature of our healthcare system. Obviously the hope is to relieve horrendous CCI /EDS symptoms but It will be interesting to see if there is improvement of function as well.

Am I right in thinking IOM were investigating this avenue?. I just wish we could have $50m injected in to Key areas of research interest, including this, with urgency.
the doctor in the UK is a private one so the cost is not covered by gov't insurance.

whitney dafoe had some assessment which i believe was inconclusive if i remember correctly but i have no idea which doctors he went to.

there is a FB group where many people are scheduled for or have had surgery....80+ people
 

Sushi

Moderation Resource Albuquerque
Messages
18,841
Likes
31,349
Location
Albuquerque
I am considering going to Dr. Stuart Marmorstein in Houston. Here is one of the many techniques he uses:
Assessment and turning on individual muscles and groups of muscles. Muscles sometimes turn off in response to various types of injuries and stresses. By testing the muscles individually (isolating them), and then applying the proper stimulus or adjustment, muscle strength can be restored. The issue here is NOT lack of exercise: it is a disruption in the communication between the brain and the muscle. This process can dramatically reduce the need for repetitive spinal adjusting.
https://head2foot.net/

I am considering it because I know him and have experienced his unique skills. He would NOT do anything forceful on patients like us—only light touch. When I spoke to him recently he though he could help. I don’t know if I have CCI but I do have hEDS and cervical degeneration.

I have a number of Atlas Profilax adjustments years ago and they only held for a very short time.
 

Daffodil

Senior Member
Messages
5,673
Likes
6,038
@Daffodil -- My daughter was getting AO for mental focus, and having her atlas in place helps with that. I imagine that her atlas was out forever--she had a lot of trauma around birth. But still, not so long when compared to my misalignment. Or yours, I suspect. Anyway--it helped her I think the way it is designed to.

When I think of your possible explanation --other parts of the cervical/spinal column start having issues and the atlas cannot hold without that solid base to balance upon--it makes some sense to me. I was pondering and remembering a time twenty years ago when I saw an excellent osteopath for a long-standing problem in my lower back. He told me it would take 3 years of regular treatments to 'cure' and it did and it was. Cured, that is. His explanation was that tendons and ligaments take a long time to shape shift, to change their length and contour. Unlike muscles.

He could guide my body to put things in right order but very quickly, the default length of the ligaments and tendons would pull my sacrum back out of alignment. Over the course of three years, he patiently coaxed those connective tissues so that they both were of equal length and I have been fine since. But I think about it --it applies perhaps to this question of the atlas holding: one side of my sacrum was initially hitched up because the ligament was too long and not keeping it in place, the other side was pulled low by ligaments that were responsively too tight.

It seems reasonable--at least for those of us without serious connective tissue issues--that a poor default head/neck position could result in some very loose and some very tight ligaments. Or be caused by same. But either way, put the atlas back in place and at first there is great rejoicing in the neck and then whatever ligament is too short is going to pull the head back into its favored position.

And there are so many other pathologies in the neck for many of us. I know that with CCI surgery there are some concerns that even if the top two vertebrae are stabilized, the instability may transfer down the spine over time. Why couldn't that happen with with an atlas re-placing?

All supposition, and I apologize for it. Sometimes I just want to figure it out and so I flail about.

@Wayne, I had read your posts about AP before, when I was first trying to decide about AO or AP or NUCCA. They were helpful; thank you. For me it ultimately came to the practitioners I had access to and so I ended up with AO. But I really like the notion of repositioning the atlas--I can see how it might be difficult to achieve but also difficult to undo. It might be a next step for me.

And now, off to massage behind my right ear!
stem to ligaments at regenexx is a possibility
 

Daffodil

Senior Member
Messages
5,673
Likes
6,038
I am considering going to Dr. Stuart Marmorstein in Houston. Here is one of the many techniques he uses:
https://head2foot.net/

I am considering it because I know him and have experienced his unique skills. He would NOT do anything forceful on patients like us—only light touch. When I spoke to him recently he though he could help. I don’t know if I have CCI but I do have hEDS and cervical degeneration.

I have a number of Atlas Profilax adjustments years ago and they only held for a very short time.
you had atlas profiliax?? what made you try something that aggressive? i thought that was supposed to hold a lot better than AO