Small posterior fossa, EDS, related issues

[Merida]

Merida submitted a new resource:

Small posterior fossa, EDS, related issues - Michael Flanagan, D.C., neurological chiropractor

Ehlers-Danlos, CSF and MS
Ehlers-Danlos Syndrome is one of many different types of inherited and acquired disorders, as well as degenerative conditions (aging and wear and tear) of the craniocervical junction (skull and upper cervical spine junction) that can cause an array of neurological signs and symptoms such as dysautonomia and multiple sclerosis (MS). I address them together in my book and call them craniocervical syndromes. Craniocervical syndromes can affect CSF and blood flow going...

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[Cort]

As with many other things I'm glad I don't have EDS...at least I don't think I do...

To further complicate matters, as a result of increased elasticity of connective tissues, as mentioned above, Ehlers-Danlos patients often have hypermobile joints, including the joints of the spine. The hypermobility of joints can cause subluxations and dislocations in the hands, feet, elbows and shoulders, as well as scoliosis and kyphosis in the spine. Hypermobility of the cervical spine can cause chronic subluxations of the upper cervical spine.

 

[Merida]

Thanks for fixing this link, Cort. Interesting: I do not have EDS but have a small posterior fossa, short clivus ( one if those skull bones that form the space of the posterior fossa) and other associated skull characteristics that are typical for Chiari and some EDS people. Plus, my cerebellum and brain stem are sitting low, but no true Chiari.
Plus, as I have mentioned, my CINE MRI, looking at spinal fluid flow, was quite abnormal.

Until I was evaluated by an expert neurosurgeon who spent close to 2 hours with me, my MRIs etc. were evaluated as perfectly normal. I wish someone would do a study and measure our posterior fossae, according to the established protocol published by neurosurgeon Thomas Milhorat, former director of the Chiari Institute.

But, virtually no one is interested in structure and function :-((((

 

[Issie]

My last MRI shows stenosis and spurs in my entire spine now. With narrowing of my spinal cord in places, bulging disk and all the yuck that goes with EDS. I'm constantly putting myself back in place. Be it ribs, vertebrae etc. I have to make sure I sit and lay supported and straight or things can go out.

As for Chiari, you have to have either a seated or standing MRI to know for sure when there are slight drops. I have a slight drop, considered Chairi 0, but docs don't think it's significant enough to cause issues.

Having EDS and FMS is no fun. But you learn to deal.

Issie

 

[Merida]

@Issie
So, that was my diagnosis, too - Chiari 0. What a quagmire. Yes, my MRI was done lying down. My structure was stable ( no true EDS? ) until the ligaments that hold my sacrum in place were damaged by the chiro who twisted and pushed vigorously on my pelvis. Caused my sacrum to actually drop! Felt it ! Then, my neck/ atlas etc went out 10 days later.

The sacrum influences the curves and structure of the entire spine, and reciprocates with the occiput - the back lower bone of the skull which houses the cerebellum and brainstem. So, it seems, before any structural stability is achieved, the pelvis/ sacrum issue must be resolved.

And, virtually no one knows how to adjust the sacrum/ pelvis. Low back pain issues are often secondary to sacral/pelvis issues. Been working on this 18 years. Finally, there may be someone who gets the complexity of this. Check out Jerry Hesch - in Colorado. May be heading there.

 

[Issie]

@Issie
So, that was my diagnosis, too - Chiari 0. What a quagmire. Yes, my MRI was done lying down. My structure was stable ( no true EDS? ) until the ligaments that hold my sacrum in place were damaged by the chiro who twisted and pushed vigorously on my pelvis. Caused my sacrum to actually drop! Felt it ! Then, my neck/ atlas etc went out 10 days later.

The sacrum influences the curves and structure of the entire spine, and reciprocates with the occiput - the back lower bone of the skull which houses the cerebellum and brainstem. So, it seems, before any structural stability is achieved, the pelvis/ sacrum issue must be resolved.

And, virtually no one knows how to adjust the sacrum/ pelvis. Low back pain issues are often secondary to sacral/pelvis issues. Been working on this 18 years. Finally, there may be someone who gets the complexity of this. Check out Jerry Hesch - in Colorado. May be heading there.

There was a doc in CO, where I used to live, who was an osteopath and did cranial -sacral work. When I broke my back, he got me out of pain in 20 minutes. He worked wonders for me. I wish I could find another doc who does this in AZ. There is a new type chiropractic that works on the Atlas and that brings the whole spine back in alignment. Not many practitioners yet.
http://www.qsm3.com/
I've been in touch with a doc that does this. But no one close by me. I'd love to try it. There are utube videos showing the progress made with it.

I'm sure my neck issues contribute to many of my issues. EDS doesn't help.

Issie

 

[Merida]

@Issie

Yes, this person you reference is a NUCCA chiropractor. I did this, and got interesting results. Think it is worth a try for many people. I could feel symptoms changing with each tiny movement of the atlas, but my adjustments never held. Finally, a sacro-occipital chiropractor got the rest of my neck much better, and the atlas held better. Helped with a lot of symptoms.

What a journey. Didn't know you had broken your back. Wow. Sorry I am slow to respond on forums. I am just so tired.

 

[Issie]

QSm3, is a little different from what the guy I talked with said. He does both. Sounds like it would be gentle and may help. But, I'm like you - things don't hold. I've gotten pretty good at putting myself back in. But can't do everything.
Yes, a broken back was one of my breaks. With EDS, some of us tend to fall easily. I have pains all over.

Issie

 

[ShyestofFlies]

Thanks for fixing this link, Cort. Interesting: I do not have EDS but have a small posterior fossa, short clivus ( one if those skull bones that form the space of the posterior fossa) and other associated skull characteristics that are typical for Chiari and some EDS people. Plus, my cerebellum and brain stem are sitting low, but no true Chiari.
Plus, as I have mentioned, my CINE MRI, looking at spinal fluid flow, was quite abnormal.

Until I was evaluated by an expert neurosurgeon who spent close to 2 hours with me, my MRIs etc. were evaluated as perfectly normal. I wish someone would do a study and measure our posterior fossae, according to the established protocol published by neurosurgeon Thomas Milhorat, former director of the Chiari Institute.

But, virtually no one is interested in structure and function :-((((

When they did the test for chiari was it upright/standing or laying down. I have heard there is concern that not being standing results in a false negative in some people.