Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues

Wayne

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I've long felt my major health issues that led to ME/CFS started with a serious head injury/whiplash as a teenager. So to say that I have a strong interest in the current discussion(s) about CCi/AAi is almost an understatement. I'm almost certain I have CCI/AAI and/or cervical stenosis to some degree (and who knows what all else). So thought I'd start a thread that focuses on possible non-surgical approaches that might be helpful for various neck issues, particularly the ones that have already been especially helpful for me.

The one thing I believe that helped me the most in taking a lot of pressure off of my compressed brainstem and cranial nerves was a procedure called AltasPROfilax. The link will take you to one of my 76 posts in which I mentioned Atlas Profilix (I just did a search). That particular post gives a very succinct description of the Atlas Profilax technique, as well as taking you to perhaps the best thread on the topic. -- 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.

This 9-MIN video--About the Atlas Orthogonal Procedure--describes the kind of specialized chiropractic care I received for many years, and which gave me a lot of temporary relief. I'd say it was the 2nd most effective thing that worked to alleviate many of my symptoms to some degree. This video also has some very good visuals, and I think gives more comprehensive perspectives than the Atlas Profilax video.

One other structural approach that I feel deserves mention in this introductory post--though I don't have any experience with it--is the Perrin Technique. Here's a link to a transcript of a podcast about this technique. -- DEC 23 2017 The Perrin Technique – Are Poor Posture and Poor Lymph Flow the Cause of Chronic Fatigue Syndrome? -- This technique has been fairly widely discussed on this forum; here's a LINK to the search results on this forum for "Perrin".
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I've discovered other techniques (including non-structural ones) that have helped as well. A brief partial listing includes nutritional; acupuncture, reflexology; DMSO; massage; physical therapy, nasal specific, etc. I'll go into detail on my experiences with these in future posts. For now, I thought I'd highlight the structural approaches that worked best for me, and perhaps as importantly, share some of the really instructive "visuals" in the videos so that those who are relatively unfamiliar with this area of the neck can get a better understanding of it.

Below is a listing of symptom improvements I noticed after getting the AtlasPROfilax technique done. I believe most of the improvements occurred as a result of pressure being relieved on my brainstem and cranial nerves. I first posted these improvements in 2010. My many symptoms have vacillated since then, and overall much better than before 2007 when I had the Atlas Profilax procedure done. -- In a future post, I'll describe a way in which I believe many people can get some of the results of having an Atlas Profilax procedure by working (gently) on themselves. I only discovered this in the past couple of days.
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Symptom Improvements since Atlas Profilax Treatment 7-9-07

Primarily Neurological Symptom Improvements

Sensory Overload - 25-50%

Excessive Neuronal Firing - 25-50% (I feel Perque B-12 is very good for this also)

Anxiety – 25-50% (Didn’t even fully realize my levels of anxiety until they lessened significantly)

Vertigo / Neurally Mediated Hypotension – 25-50%

Environmental Illness (EI) / Multiple Chemical Sensitivity (MCS) – 25-35%

Cognitive Function / Ability to take make mental notes – 25-35%

Ability to Organize - 15-20%

TMJ (Moderate to begin with) - 20%-25%

Ability to relax – 25-35%

Severe adrenal exhaustion / dysfunction – approx. 25%

Sense of Balance – 25-50%

Sleep – approx. 15-20%

Primarily Physical Symptom Improvements

Physical / muscle strength – 25-30%

Viral overload symptoms – 50-75%

Digestion – 50%+

Generalized Pain and Headache reduction - 25-50%

Detoxification Capabilities – 25-50%

Postural Corrections, from my neck, down my entire spine to my hips, knees and even feet – I can’t even put a percentage on this – A growing sense of wholeness seems to pervade my entire postural structure. My chest cavity seems to have risen. When I walk these days, I feel like I’m almost gliding.

Overall energy level – approx. 10-25%

I feel taller and I am taller by 1/4"-1/2"

Spiritual/Energetic Improvements of Note

Overall Sense of Well Being – 25-50% (I especially notice this when I’m walking)

Greater sense of patience

Greater sense of rhythm

Feel less dense, a greater sense of fluidity
 
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sb4

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Interestingly I emailed a place 3 years ago that did atlas corrections to arrange an appointment but they never got back to me so I forgot about it.

I may as well dump what I have been messing around with this past month here although it is super preliminary.

I have been doing a few things to correct posture over this last year (traction, sleeping on floor, sitting on floor, cervical collars, etc) with no noticable difference in symptoms. However at the turn of this year I gave it another go after reading more about spinal alignment and chin tucking.

I noticed when I held my spine in a certain way I reduced the lower back ache that I had and it allowed me to chin tuck more effectively so I did it for the rest of that afternoon and then again the next day. That day I also started adding a bunch of neck excercises.

What I did was hold my spine in a way that allowed me to chin tuck better and then started rolling my head down left back right etc (I have since read you shouldn't do this). Anyway my neck would crack and it would sort of feel good as I moved it back and right so I did this a few times. Soon after I started feeling weak, sickly, and my throat started getting sore. However, I also noticed my heat tolerance had improved and I could sweat a little (this is significant as I basically don't sweat at all usually, even when baking hot). I tested this out by doing mild squats and sure enough I was sweating a little and tolerating the excercise better.

This was very exciting for me as I believe it was the neck stuff that both made me feel ill and improved some POTS symptoms. This lasted 2 days or so before I feel like I am back at baseline now, maybe a little better. What I did notice also is that my neck was incredibly sore and stiff since, I think from rolling my head so instead I have been focusing on just trying to fix my day and night posture so that my head is held in the chin tucked long necked position like you see in african tribes and the like.

This is proving difficult however. I have tried a bunch of different posture advice but what I am focusing on currently Esther Gokhales aproach. You can watch a number of videos on youtube but notice how what she calls propper posture results in a very lenghened neck and spine, and a tucked chin. The opposite of the forward head posture we see a lot of today and that I most certainatly have.

Obviously this is very preliminary stuff but even those 2 days of sweating are enough to get me excited about the possibilities. Perhaps poor posture from being a disgusting filthy nerd, combined with possible EDS, combined with possible kickboxing neck damage, combined with tonsilitus has resulted in poor cervical spinal position and dysautonomia?

Either way I intend to get to a point where my posture is correct 100% of the day and night, then add neck exercises that could possibly crack my neck into position, and then see chiropractors / those that specialise in the cervical spine before I rule this out.

@Wayne I will also add the Esther Gokhale also talks about glide walking as the correct way to walk and comments on how african tribes glidewalk instead of thump walking. Interesting that you noticed you felt like you were glide walking after adjustment.
 
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debored13

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Some thoughts —eating collagen , proline. Hyaluronic acid injection into ligaments?
Vitamin c intake

Bpc-157 , a peptide That @Hip mentkoned. Also nandrolone , an anabolic steroid often used in aids patients for muscle wasting, but also has progestogen effects.

Manual cervical traction from a PT.


Personally I wouldn’t let Even a good nucca chiropractor touch me with this at the moment , it seems too sensitive of an issue.
Found a study on DHEA and collagen formation , might be a safe alternative to steroids.
Will post studies and stuff later. If anyone has more energy and time (I have bad vertigo , maybe hypoxia from the way I’m sleeping on face with collar, plus vertigo from pt) to go through the longer thread I posted some relevant studies and anwxtodes and so did @Hip. If not no biggie I’ll get to it in a while , could b a while

There’s also prolotherapy and stem cell injections directly into the ligaments.

Has anybody read Robert Becker’s book “the body electric”
 

debored13

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All these things could be worth looking into.



I have read it a couple years ago.
The reason I bring it up is it seems like electromagnetism might have applications to healing ligaments. However so far he emphasizes the need for the exact right kind of current and right amount of current and I feel like there are a lot of quack devices out there taking advantage of the knowledge that electromagnetism can heal but lacking the specifications to actually work
 

Rlman

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there is stem cell therapy and prolotherapy.
Regenexx offers stem cells and has several blog posts on treating CCI which it only started to do in past few years it seems. see this recent post: https://www.regenexx.com/blog/a-case-study-of-severe-ccj-instability-and-our-picl-procedure/

it seems stem cells might be more effective than prolo or Platelet Rich Prolotherapy but some people have improved with that too. see caringmedical.com. regenexx does the former therapies first before stem cells i think.

there are some FB groups where people have shared their experiences with such.

only lady on the BTM group did the stem cells, she has an fb group chronicalling how she's doing. it's called Janelle's Medical Journey-Keeping her head on!

also there is a FB group called the Ehlers Danlos Syndrome and the Cusack Protocol which has helped some strengthen their ligaments with supplements. it claims to help CCI over 6-12 months. Cusack's family itself has an amazing recovery story from severe EDS including CCI. there are threads re CCI in that group.

strengthening neck muscles is also suggested if possible

also apparently MCAD can cause ligament laxity. even dr henderson saying so apparently based on what ppl saying he told them in btm. the blogger at methylnation said dealing with histamine resolved her EDS like symptoms but not sure she had cci. also i think that blog hasnt been updated in a while so idk if her improvements held
 

Malea

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I don’t know if this is already mentioned somewhere: here in Germany there are online videos about how to train the deep muscles of the neck for better stabilisation. You put something on your head to hold a laser pointer on your forehead, than have a fixed point you look at and than start training only with eye movements and later with very little movements of the neck.

This is a video about it (which shows the movements in the second part of the video), but I have no idea if it is possible to watch it from the US:


I trained like this for a few weeks and my tightness of the throat got much worse. So I guess I trained the wrong muscles. :bang-head:

But I‘ve heard of others who are doing quite well with it.
 

debored13

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I don’t know if this is already mentioned somewhere: here in Germany there are online videos about how to train the deep muscles of the neck for better stabilisation. You put something on your head to hold a laser pointer on your forehead, than have a fixed point you look at and than start training only with eye movements and later with very little movements of the neck.

This is a video about it (which shows the movements in the second part of the video), but I have no idea if it is possible to watch it from the US:


I trained like this for a few weeks and my tightness of the throat got much worse. So I guess I trained the wrong muscles. :bang-head:

But I‘ve heard of others who are doing quite well with it.
Do you have cci? To be honest someone with severe cci may not benefit from exercises sitting up like this without a collar and it could be dangerous.
 

Malea

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Do you have cci? To be honest someone with severe cci may not benefit from exercises sitting up like this without a collar and it could be dangerous.
Umm that’s a shocker. It was recommended to me from someone with CCI.
I strongly suspect CCI, yes, and my doctor diagnosed me clinically from symptoms. I‘m too weak to have an upright mri right now to confirm it. Will try to have an supine mri nearby but I‘m pretty sure that won’t show anything.
 

debored13

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I wouldn’t say delete it but I just wanted to put that out there. If you have enough instability, like Jen and Jeff did, I would think that doing much being upright with a collar could cause bad, even dangerous issues. If you have only slight instability and are not a surgical case maybe less so. The problem is a lot of EDS ppl with cci are able to do exercises to strengthen their neck muscles to make up for laxity, but most severely ill ME patients totally cannot exercise without PEM and so I think it might be more fruitful and safer to focus on stuff like traction or massage
 

debored13

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And I said severe cci. One pt who was very dismissive of the idea of cci had me stand without collar which I could barely do and it didn’t even feel that horrible in the moment but I felt dizzy for days. Sometimes removing the collar would make me somewhat catatonic for awhile. I would just be careful of spending lots of upright time without collar if you have cci
 
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Strawberry

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I'd like to put a warning out there to not have ANY chiropractic done. I've been to 4 different practitioners, and all have damaged me in one way or another. The last one used a method called "Blair Upper Cervical Technique" and was supposed to gently fix my atlas over time. This was at least 10 years ago, back when I was only sick and fatigued, and was still able to do anything I wanted (I just got super sick.) But this atlas correction did me zero good. I can't say chiropractic put me where I am today, but I do know it didn't help me one bit. And definitely did its damage along the way.

I AM going to be looking into prolotherapy and/or stem cell therapy and any other therapy that is similar. @Learner1 also suggested to me prolozone and PRP treatments might help, but I haven't looked into these. I don't think any of the old chiropractors in the past ever knew or asked if I was hypermobile. I'm getting the impression that is a different set of treatments to help a hypermobile person.

Also fyi, I have not had an MRI yet, so I don't know for sure if I am CCI or if I have some other neck damage.

edit to add: I also am NOT severe. I am mild-moderate.
 

Daffodil

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I'd like to put a warning out there to not have ANY chiropractic done. I've been to 4 different practitioners, and all have damaged me in one way or another. The last one used a method called "Blair Upper Cervical Technique" and was supposed to gently fix my atlas over time. This was at least 10 years ago, back when I was only sick and fatigued, and was still able to do anything I wanted (I just got super sick.) But this atlas correction did me zero good. I can't say chiropractic put me where I am today, but I do know it didn't help me one bit. And definitely did its damage along the way.

I AM going to be looking into prolotherapy and/or stem cell therapy and any other therapy that is similar. @Learner1 also suggested to me prolozone and PRP treatments might help, but I haven't looked into these. I don't think any of the old chiropractors in the past ever knew or asked if I was hypermobile. I'm getting the impression that is a different set of treatments to help a hypermobile person.

Also fyi, I have not had an MRI yet, so I don't know for sure if I am CCI or if I have some other neck damage.

edit to add: I also am NOT severe. I am mild-moderate.
I'm sorry to hear that. I dont usually go to chiros but I am going to go to one because he is the only one in the city who can do a digital motion X-ray. he seems very nice but he isnt cheap. he suggested something called AO Instrumentation and then stem cells and surgery as a last resort.

i thought PRP was pretty much the same as stem cells. I know PRP from looking up anti-aging stuff. ..or maybe stem cells is more like fat grafting...?

i have no idea what to do but am hoping the philadelphia collar will tell me something

@debored13 so you are wearing a collar and you feel better on it?