Jennifer Brea: I have craniocervical and atlantoaxial instability

Dainty

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Are you able to say any more about the specifics of that cranial osteopathy approach? Many thanks in advance.

I haven't been for a while but I tried two different chiropractors -- I wasn't aware that there were "kinds" so I apologize I can't give more specifics.

Cranial osteopathy is a manual medical treatment administered by doctors with a medical degree and extensive training in anatomy and physiology. This training makes it possible for them to identify the root cause of a structural problem and treat that, which is often an entirely separate area of the body than the problem spot.

One example is carpal tunnel syndrome, where structural strain in the abdomen can literally pull all the interconnected fascia inwards, so that just like the sleeves of a long sleeved shirt getting pulled up the fascia enveloping the nerves on your wrists becomes stretched very thin. Our wrists are designed to withstand overuse, but when the fascia is extremely tight, they cannot function the way they should.

Perhaps a more relevant example to this thread is my osteo tells me his most common patient is those who have already seen chiropractors for neck pain. He says often times they get mad at him afterwards, because he spent the entire treatment working on their back. "You didn't even touch my neck!" But he tells them do the "homework" he prescribed (super gentle exercises, like certain breathing stuff) and call him in 2 weeks. Sure enough, their neck pain is gone and they never need another treatment.

Now, our cases are inevitably more complex. But those examples give you a bit of an idea.

Cranial osteopathy differs vastly from chiropractic medicine. First of all, chiropractic medicine sees a bone out of place, and the instinct is to "fix" it. In osteopathy, if a bone is out of place and it is causing the body problems, that's because it is being pulled out of place, or if it is wobbly it's because a structural issue elsewhere is making the tissues surrounding that bone too flabby to hold it in place like they're supposed to. Everything on the body is interconnected. Chiropractic medicine forces the bones back into place, but without fixing the extensive interconnected web of what pulled it out of place to begin with, it will continue to revert back.

Another key difference is that cranial osteopathy is a more energy-based approach. Practitioners learn to feel what's called the "cranial rhythm", also known as the primary respiratory mechanism. It's basically a "pulse" originating in your spine and cranium that slowly expands and contracts independent of your heartbeat and breathing rhythms. This pulse can be felt throughout a healthy person's body, reverberating through all the tissues head to toe. It keeps every single cell it reaches in gentle constant motion, like the waves on a seashore.

You know how if you immobilize a joint for a long while, then try to move it, that joint will have difficulty moving or might be entirely immobile? A similar thing happens to tissues when a strain, tension, trauma, or structural issue blocks the primary respiratory mechanism from reaching that area. Lacking this continuous gentle movement, it becomes hardened and "cranky", impeding lymph and bloodflow, aggravating the nerves, and then causing issues for everything connected to it, and everything connected to THAT....and so on and so forth. A cranial osteopath will notice where they can no longer feel the pulse of the primary respiratory mechanism, and then trace it back to where they can feel it, and then address only the obstacle to that flow.

Once the body's own primary respiratory mechanism can reach those areas again, then you start healing yourself. As an example, my osteopath said my legs were "dead" in his words, when I first started seeing him. I was almost completely bedridden. Strains in my hips and scarum area prevented the primary respiratory mechanism from reaching my legs at all.

Trauma plays a very large role in structural problems. This is both emotional and physical. The best way I can describe this is how my ribcage was developed too far inwards, preventing me from taking deep breaths. It had been that way my entire life, but never diagnosed. I had a lot of anxiety during the years my ribcage was developing, so the deep, relaxed breaths that would normally push a ribcage to devolop the bones outwards so I had enough room for my lungs simply didn't happen. An emotional problem, causing a very obviously physical issue. Now cranial osteopathy could address the problem, but the treatment could only work if I was willing to also learn how to take deep breaths and to do so regularly. To this day, if I have several weeks of anxiety that results in me not breathing properly, my ribcage begins going haywire again because it's starting to revert back. Thus, cranial osteopathy is a treatment that can only work if you also address emotional stuff that contributed to the structural issues in the first place.

I had a lot of issues at the base of my skull area where the nerves and everything pass through to the neck. Cranial osteopathy has been my answer there. The relief was indescribable. When I was severe, I was experiencing times where I was almost completely paralyzed, and also times when the only time I could breathe was if my chin was all the way down to my chest. Something inside my neck was literally blocking my airways unless I was in that position, during these episodes. I was reading Jen's story and it sounds like there are a lot of parallels.

I apologize for the length. It's hard to know what to share, as it's such an extensive topic. I saw another osteo recently who said that she always knows when a patient has seen a chiropracter because she can feel the shock in the bones; it actually introduces further trauma to the body, ad she has to help the body unwind that before she can even begin to address the original structural issue the chiropracter was working on.

Final note: I never saw cranial osteopathy as "the" answer or "the" cure. When I began getting treatments it was for symptom relief only--cranaial osteopathy relieved pain and made it possible for me to rest deeply for the first time in many years. I was dying on multiple fronts, and had decided to stop pursuing treatment altogether. I only wanted to be made comfortable until I passed.

Cranial osteopathy resulted in me feeling my body beginning to heal from the inside out on a really core level. And even though I am now working a highly physical job part time, financially supporting my new husband and our dog, and virtually symptom free most days, I still do not tout it as the total cure. All I know is that it facilitated massive recovery for my own body to address a lot of its own stuff.

I hope that helps; let me know if you have more questions I can help with. I found this treatment from a friend here on PR I'd never met who flat out offered to pay for my first 2 treatments, that's how convinced he was it would help me. I try to pass on the knowledge whenever I can because it truly changed my life around from dying to getting my life back.

Wishing you the very best in your journey.
 

Sparrowhawk

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Cranial osteopathy is ....
...
I apologize for the length. It's hard to know what to share, as it's such an extensive topic..

Good gracious, no need to apologize, that was a magnificent introduction to a treatment modality -- thank you! Very clear.

Also fantastic that it helped you so much. That's tremendous.

Anything that can help your body heal from bedbound to your current activity level is worth exploring. I will have to research whether there are any such practitioners near me (Bay Area CA). It looks like you are up in Seattle so I assume the person who helped you us up there as well? Is that person a member of a particular school or association, or might they be open to recommending a colleague down here in my neck of the woods? Do you still have to go to them periodically?

Thanks again for taking the time to write such a great overview.
 

Dainty

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I will have to research whether there are any such practitioners near me (Bay Area CA). It looks like you are up in Seattle so I assume the person who helped you us up there as well? Is that person a member of a particular school or association, or might they be open to recommending a colleague down here in my neck of the woods? Do you still have to go to them periodically?

Thanks again for taking the time to write such a great overview.

You're welcome, so glad it was helpful!

I will ask around about a good practitioner in the Bay Area. I know I looked into it a couple years ago for another friend so I'll see if I can dig up the names again and PM you.

I took a couple years off of seeing an osteopath due to fiances when I was living on the streets, so it has not been a linear process. I was in a major car accident two and a half years ago and was able to see one for about 10 months because of the accident injuries, which of course sent my body completely haywire. I just started seeing one again because treatment was stopped before the accident injuries were fully addressed, and I found out I have a bit more insurance coverage.

I do not need to continue seeing an osteopath to maintain my current level of function and slow recovery. But whenever I do see one my healing process speeds up pretty dramatically. As the rest of you are probably familiar, maintaining my current level of functionality and health is not an automatic process, but rather a continuous vigilance of making sure to rest enough, breathe gentle and deeply often enough, work with my hands on my own body and meditative practices. I spend about 30-60 minutes every morning and evening doing these sorts of things, and if I don't I definitely feel my functionality slipping.

But tangible improvement continues for me, and I'm excited to see where life takes me. I just decided to attempt full time work at my job, so we'll gradually scale up to that and see if I can handle it. :)
 

Diwi9

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If you've been diagnosed with CCI or think you may have CCI, I'd recommend watching this video before considering any sort of manipulation therapy. Here's the bio of the presenter, Dr. Michael P. Healy:

Michael P. Healy

PT, DPT, DOMTP, CPT, CSN, MBA
President
In 1986, Mike graduated from the University of New England with a Bachelor of Science in Physical Therapy, (PT). Mike continued his education and graduated Bryant University with an MBA in Business in 1997. After receiving his MBA, Mike opened Healy Physical Therapy in 2003. He decided to further his education and received a Doctorate in Osteopathic Manipulative Theory & Practice, (DOMTP), from Osteopathic College of Ontario in 2008. In 2011 Mike applied and was accepted into the Doctor of Physical Therapy Bridge Program at Simmons College: School of Health Sciences. He graduated in 2012 with his Doctorate of Physical Therapy, (DPT). In addition to his above degrees, Mike also became a Certified Personal Trainer (CPT) and Certified Sports Nutritionist (CSN) by the American Muscle & Fitness Personal Training Institute. He also is a Titleist Performance Certified Golf Fitness Instructor. Mike's specialty is advanced manual therapy, with a personal interest in Ehlers-Danlos Syndrome patients.

 

Wayne

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work with my hands on my own body and meditative practices. I spend about 30-60 minutes every morning and evening doing these sorts of things, and if I don't I definitely feel my functionality slipping. ...... But tangible improvement continues for me, and I'm excited to see where life takes me. :)

Hi @Dainty,

I just saw this thread today, and am happy to hear you're "bouncing" back (if I may infer that you're now somewhat bouncy? ;)) It appears that way, since you self-describe yourself as excited. :thumbsup:

I found it interesting how much time you spend on your body to keep your functionality up. I also spend about 30-60 minutes 2-3x/day, with one of those time periods in an mHBOT chamber (which seems to be helping a lot). Perhaps it will lead me to making some gains at some point. But for now, it mostly allows me to "tread water".

BTW, very nice and concise writeup you did on cranial osteopathy. I'm currently seeing a very intuitive physical therapist on a weekly basis, and she's doing almost exactly what you describe. I'm making good progress with that. In one session, she worked extensively on my knee, and my tinnitus subsided a bit during the session. It's all connected.

Again, happy to hear you're "on the mend"!
 
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Dainty

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@Dainty Very interesting. Perhaps I missed it in your post but how much improvement did you gain from cranial osteopathy?

From:
  • Almost completely bedridden - could usually get to bathroom on my own and shower sitting on the floor, but also had paralytic episodes that would last a good 12 hours or more
  • PEM that was generally delayed....the next day I would often be okayish, but approx. 48 hours later I'd completely crash. I described it as "fatigue so severe it ought to be classified as a form of pain."
  • Not tolerance of natural light, even daylight, all windows must be blacked out
  • Fibro pain - my entire day was spent coping with/distracting from my constant pain. I was often in level 7-8 pain as a baseline and it would shoot up from there on a regular basis
  • Food reactions - for about 5 years there were only 5 specific ingredients I could tolerate, prepared specific ways. Before we figured that out I was constantly down to 1 or 0 foods I could tolerate, and often had to receive IV nutrition for it
  • Chemical Sensitivities/environmental reactions: had to live in a custom built environment for folks with MCS--prior to that was living in a stripped down bathroom where I was still having multiple life-threatening reactions per day. The porcelain trailer saved my life, got to experience days without my airways closing at all for the first time in over 6 months. Reacted to all bedding and clothing, required everything be organic unbleached, undyed cotton that was boiled and washed for months before it was tolerable. No soft bedding I could sleep on; was mostly bedridden on bare wooden slats. Had bedsores. Very uncomfortable. Reacted to all paper. All water had to be filtered due to chlorine reactions.
  • Cognitive: could not handle any administrative stuff. Required caregiver to handle all finances, all appointment bookings, all purchases, etc on my behalf. My parents had to apply for disability on my behalf.
To:
  • Take the dog for a 10 minute run every morning, work 20-25 hours/week housecleaning, do own laundry by hand, do own cooking from scratch, do own dishes by hand. No PEM ever.
  • Able to drive!
  • Able to tolerate natural light, direct sunlight still problematic, but sunglasses and clothing cover fixes it
  • A fibro flare up happens occasionally, perhaps once every other month, where pain can get as high as an 8. Otherwise my only pain is menstrual cramps (which still get very severe) and unresolved neck discomfort from the accident.
  • Food--able to eat all foods except gluten, dairy, anything in the onion/garlic family. Still allergic to lavender.
  • Environmental reactions: still need to wear a gas mask when out and about. Currently live in a standard RV with standard bedding. Must live fragrance free, but able to wear normal clothing if not purchased from thrift store. Running water, including shower water, no filtration required. Paper and ink no reaction.
  • Cognitive: I handle all finances and administrative stuff with aplomb. :D I don't notice brainfog anymore. Possibly some short term memory stuff still, but not enough to cause much issue in day to day life.
This process obviously did not happen overnight, and you can read about how severe I was and my discoveries as I was improving in my blog and on my posts throughout this site. This blog post form nearly 5 years ago explains about my experience with PEM being relieved, and also a bit more about all the lifestyle aspects that I was practicing along with the cranial osteopathy that was essential for it to work. Looks like that was 2 years into my treatment.

It's been a very long journey.

Edit: here's another old blog post that details many of my structural issues at the time treatment started. This was from 2012.
 
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Dainty

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Hi @Dainty,

I found it interesting how much time you spend on your body to keep your functionality up. I also spend about 30-60 minutes 2-3x/day, with one of those time periods in an mHBOT chamber (which seems to be helping a lot). Perhaps it will lead me to making some gains at some point. But for now, it mostly allows me to "tread water".

BTW, very nice and concise writeup you did on cranial osteopathy. I'm currently seeing a very intuitive physical therapist on a weekly basis, and she's doing almost exactly what you describe. I'm making good progress with that. In one session, she worked extensively on my knee, and my tinnitus subsided a bit during the session. It's all connected.

Again, happy to hear you're "on the mend"!

Wayne, I'm always so happy to "see" you! I don't think I ever told you that you were instrumental to me realizing i needed to slow down. I recall a brief phone call we had a long time ago, before I learned how to calm down my nervous system, and it was clear to me that my wound up energy we not good for you but I didn't know how to change it. It was soon after that that I stepped down as forum manager and began focusing full time on working through all this stuff. I remembered how relaxed your energy was and I knew that had to be part of the answer for me, too. So thank you!
 

Sparrowhawk

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From:
  • Almost completely bedridden -
To:
  • Take the dog for a 10 minute run every morning, .
Fantastic, so happy for you!

Such a familiar set of issues to those of us here (down to one food--yep), and yet every time I read another person's account my heart breaks that anyone should have to go through such circumstances. At the same time huzzah, wonderful and amazing that you have healed to the extent you have, and hat's off to your perseverance! And your writing is amazingly descriptive. Thanks for the links to your two blog posts.

I too have benefited immensely from getting out of the adrenal zone and doing meditation this past 12+ months and my POTS has pretty much disappeared unless I have a really bad night or two in a row. (Whoa and I also did almost two decades of martial arts...so many correspondences.) Thanks again.
 

Dainty

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@Dainty Wow, massive improvement! You had it rough. Do you intend on getting an MRI to check for CCI/Chairi in the future?

We investigated that route prior to discovering cranial osteopathy, because I had many of the symptoms associated with it. Not sure how many years ago. The MRI was done and they said I did not have it. I have since been told that the MRI must be read by doctors familiar with Chairi Malformation in order to get an accurate report, whereas this one was read by hospital staff, I think.

It'd be interesting to pull the records and get a second opinion....even moreso if we took a second MRI now that I'm so much better to compare! Oh, the things I would do with unlimited money, energy, and time. ;)
 

Wayne

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Wayne, I'm always so happy to "see" you! I don't think I ever told you that you were instrumental to me realizing i needed to slow down. I recall a brief phone call we had a long time ago...
Hey @Dainty,

Thank you for your sweet comments. I'm always happy to "see" ;) you as well. Since our phone call all those years ago, I have felt a sense of endearment towards you. And I can't tell you how happy I am for your remarkable health improvements, and your recent marriage. -- You deserve it! :hug: (Especially since it took so much tenacity to achieve.)

I checked out some of your blog posts, and was quite intrigued by how you figured out a way to get some amazing improvements for your abdominal difficulties. You might find THIS POST interesting, which describes how a woman was able to recover completely from 23 years of abdominal misery after just one castor oil pack.
We investigated that route prior to discovering cranial osteopathy, because I had many of the symptoms associated with it. Not sure how many years ago. The MRI was done and they said I did not have it. I have since been told that the MRI must be read by doctors familiar with Chairi Malformation in order to get an accurate report, whereas this one was read by hospital staff, I think.
I had a similar experience to this, except that I told them I wanted to have the MRI analyzed by a specialist in Chiari. They poo pooed that whole notion, and wouldn't agree to it. I stood my ground and told them I thought it was very important. They wouldn't budge, and wouldn't even do an MRI until I consented to their demands.

I declined. Doctors can be very territorial, and irrational. They could have done a quick $1,000+ MRI and given up the $100-200 reading fee. But they wouldn't. Go figure. -- I'm sharing this story because others who are interested in purusing an accurate MRI and reading could face a similar run-around.
 
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Mary

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@Dainty - your story is very compelling, thanks for sharing! I'm beyond impressed that you were helped so much by cranial osteopathy. Do you have any tips for finding a good cranial osteopath in southern California? I did a little searching and found this osteopath who looks interesting: http://www.kathryngillmd.com/about-dr-gill/
- she has a proficiency certification from the Osteopathic Cranial Academy, which I assume is a good thing :)

Any help you could provide would be appreciated - thanks!
 

StarChild56

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If you've been diagnosed with CCI or think you may have CCI, I'd recommend watching this video before considering any sort of manipulation therapy. Here's the bio of the presenter, Dr. Michael P. Healy:

Michael P. Healy

PT, DPT, DOMTP, CPT, CSN, MBA
President
In 1986, Mike graduated from the University of New England with a Bachelor of Science in Physical Therapy, (PT). Mike continued his education and graduated Bryant University with an MBA in Business in 1997. After receiving his MBA, Mike opened Healy Physical Therapy in 2003. He decided to further his education and received a Doctorate in Osteopathic Manipulative Theory & Practice, (DOMTP), from Osteopathic College of Ontario in 2008. In 2011 Mike applied and was accepted into the Doctor of Physical Therapy Bridge Program at Simmons College: School of Health Sciences. He graduated in 2012 with his Doctorate of Physical Therapy, (DPT). In addition to his above degrees, Mike also became a Certified Personal Trainer (CPT) and Certified Sports Nutritionist (CSN) by the American Muscle & Fitness Personal Training Institute. He also is a Titleist Performance Certified Golf Fitness Instructor. Mike's specialty is advanced manual therapy, with a personal interest in Ehlers-Danlos Syndrome patients.

Wow just started watching this and thank you - it is excellent thus far. I love how he draws out the anatomy in a way I can grasp. Thank you again!

ETA: @toyfoof in case you haven't seen this. I am watching it - it is 1.5 hours so I will not be able to watch in one fell swoop but it is very interesting and I will watch it over the next couple of days.

ETA: this was done 2 years ago and where I am in the video he is stating that only upright MRIs can catch CCI, but as we now know supine with flexion+extension (and other technical stuff I can't remember) is the preferred method. But still it is a good video.
 
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Dainty

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@Dainty - your story is very compelling, thanks for sharing! I'm beyond impressed that you were helped so much by cranial osteopathy. Do you have any tips for finding a good cranial osteopath in southern California? I did a little searching and found this osteopath who looks interesting: http://www.kathryngillmd.com/about-dr-gill/
- she has a proficiency certification from the Osteopathic Cranial Academy, which I assume is a good thing :)

Any help you could provide would be appreciated - thanks!

Mary, that's a very interesting osteopath indeed! The fact that she's an MD but her site and her practice appear to be all about osteopathic medicine is fascinating.

Yes, she'd be a great person to start with. I'd recommend calling her office, explaining a summary of your history and ask if she has a lot of experience dealing with chronic conditions or if she could recommend someone else who'd be a better fit. That's how I found the osteopath who helped me so much--my mom/caregiver called to ask an osteopath I was scheduled to see for the first time if they had experience with severe chronic conditions. Even though I had an appointment on the schedule the osteopath was like "You should see this guy instead, he's treated a lot of those cases with success."

The other things I ask/look for when trying to find a good one are:
  • Do they practice cranial osteopathy on 100% of their patients? If the answer is no, I move on. This modality requires such extensive training to do right, that at our level of sensitivity I would not recommend anyone who only does it part time.
  • Do they demonstrate an understanding of the finer complexities of osteopathic treatment? If they don't, then they probably only know some of the basics of osteopathic manual medicine, which is enough to be confident but dangerous to us.
Dr. Kathryn Gill passes the latter with flying colors when I read this on her site:

What does the doctor feel? An unhealthy area of bone, for example, may have a more dense consistency, with lower temperature, less plasticity and greater deformation in terms of its overall shape and position. However, exploration of the “dis-eased” parts of someone’s system is not limited to bone. We evaluate every tissue, and many functions such as gut motility, respiration, or vascular position and activity.
The entire page is an extremely helpful summary of osteopathic treatment.

Great find, Mary! If you end up seeing Dr. Gill I'd absolutely love to hear how it goes. :heart:
 

Mary

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@Dainty - thanks so much for your reply! I will contact Dr. Gill and will let you know how it goes. One drawback is she is in Santa Monica. Without traffic, the drive would be a little over an hour, which would be doable for me maybe 2 x a month, but unfortunately the 405 (the main highway to Santa Monica) is notorious for horrific traffic, routinely increasing the drive to over 2 hours, which is quite rough on me. So I am going to contact her but depending on how often I would need to see her, it may not be doable from a purely physical point of view.
 

Dainty

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@Dainty - thanks so much for your reply! I will contact Dr. Gill and will let you know how it goes. One drawback is she is in Santa Monica. Without traffic, the drive would be a little over an hour, which would be doable for me maybe 2 x a month, but unfortunately the 405 (the main highway to Santa Monica) is notorious for horrific traffic, routinely increasing the drive to over 2 hours, which is quite rough on me. So I am going to contact her but depending on how often I would need to see her, it may not be doable from a purely physical point of view.

Oh that's a really good point. A long drive like that would likely undo a lot of the benefits of treatment. I actually just spoke with an osteopath a couple weeks ago who told me she informed a patient she couldn't continue treating her unless/until the patient found a way to not have to drive so far, because it was negatively impacting treatment so much. And that was only a 45 minute drive! When my husband and I do osteo treatments, we trade off so the one not treated does the driving. And even then, an hour's car ride is pretty rough on the person treated.

Dr. Gill might know of someone in your area she could recommend. Fingers crossed for you, and I'll let you know if I run across anyone else in that area.
 
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