When CCSVI fails, try AO and/or the Dentist

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: When CCSVI fails, try AO and/or the Dentist

Postby Rosegirl » Sat Aug 17, 2013 12:52 pm

I’ve recently noticed that part of my problem walking is that I lean too far forward. My shoulders and head should be over my ankles when I stand still, but my head is more toward my toes. That puts me off balance and means that I have to work even harder to lift my knee and bend my ankle for each step.

Just stand sideways to a mirror or have someone else stand beside you and look. If you have a similar problem, try these two quick methods and see if your posture improves.

First, just try tightening your glutes (the big muscles in your rear end). Squeeze them together and see if this pulls you backwards so you are more upright.

Or -- while you are standing, place the tip of your tongue in the front of your mouth where your front teeth meet the gums. You don’t need to press hard, just let it rest so that the tip of the tongue is higher and the rest drapes down like a hammock.

When I do either of these, it pulls my head back over my ankles where it’s supposed to me. I’ve just started doing this and each time it’s scary since either of these exercises immediately pulls my shoulders back at least an inch. But that’s where they are supposed to be, and I need to get used to it.

Please post if you have a similar experience.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Rosegirl » Tue Aug 27, 2013 4:25 am

Just a quick update on the tissue/Aqualizer topic.

Last week I spoke to the neurodentist and asked how long I should wear the Aqualizer. The package says not to wear it more than eight hours a day, but I thought that might not apply to me since the appliance the dentist wants to make for me will be worn 24/7. Sure enough, he said that I should wear it as many hours a day as possible.

For the last few days, I’ve been wearing it while I sleep at night as well as a few hours a day. As of two days ago, I noticed that I’ve been moving faster. And occasionally I don’t need to hold on with both hands as I “wall walk” around the house. The improvement is still inconsistent, but when the change kicks in, the difference is obvious – and when my left leg stops bending at the knee and/or ankle, that’s a lot more obvious, too.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby 1eye » Tue Aug 27, 2013 11:30 am

I have noticed I clench. My wife does too, and her dentist gave her a plasticky-rubbery device to wear over all her teeth at night. She has had a further problem, that she takes it out and throws it, in her sleep. :-) Most dentists, or orthodontists, can probably make you one.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Rosegirl » Wed Aug 28, 2013 4:39 am

1eye,

It seems that the common issue for many of us is that there's something above the collarbone that impedes something. Blood, spinal fluid, or maybe something pressing on a nerve, whatever it is, it has a negative effect somewhere. It might explain headaches and vision problems above the problem area or neurologic problems below.

So what if at least part of our symptoms are caused by muscle tension in the neck? Both the dentist (TMJ) or the chiropractor might be helpful.

The challenge is to find the right "ist" to fix your personal problem. Neurologist, radiologist, dentist, cranial sacral therapist, the list just keeps getting longer. The bad news is that it just means even more doctors to find and see if they can get results. That takes a lot of time, money and stamina.

But the good news is that, unlike what our neurologists told us, our unique problems could actually be treated, and without expensive, dangerous drugs. While I hate the idea of a scavenger hunt for a doctor, that is vastly outweighed by having hope! That's a critical element that by neurologists never "administered".
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Re: When CCSVI fails, try AO and/or the Dentist

Postby 1eye » Wed Aug 28, 2013 1:54 pm

I think part of that unfamiliar hope is unwillingness to recognize a condition they didn't "discover". In my biz we used to call it NIH, or Not Invented Here syndrome. Of course while we are refraining from recognizing, Dentists and Chiropractors are fair game too.

There's a societal phenomenon that helps. In the same way word of mouth has been the agent that has spread the disinformation about CCSVI, with doctors being the main vectors, word of mouth is an extremely powerful agent for spreading the news that somebody found something that works. It's hard to deny visual evidence and it's hard to disinform loved ones. They are the vectors of hope.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby EJC » Sat Aug 31, 2013 3:08 pm

I saw a quote recently, it may even have been in a signature on this very forum. It couldn't be more apt to the position we all find ourselves in.

"It is difficult to get a man to understand something, when his salary depends upon his not understanding it!" - Upton Sinclair - from his book I, Candidate for Governor: And How I Got Licked (1935)

A quote nearly 80 years old that couldn't be more relevant.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby civickiller » Sat Aug 31, 2013 7:55 pm

i believe the cure for most of us is skeletal alignment

i know i have braces to fix my jaw misalignment
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Re: When CCSVI fails, try AO and/or the Dentist

Postby 1eye » Sun Sep 01, 2013 7:29 am

Why did it take so many blood tests to diagnose "MS" when in the end it only took 1 brain MRI, and none of the umpteen blood tests were positive? Among all of them, not a single one was repeated. Nobody paid any attention to my bones except one guy early in my 15 year diagnosis experience. He sent me to a worse-than-useless chiropractor who never did any investigating, but I think he damaged my kidney. Then to a very early (1989) MRI (there were no MRVs then) of (wait for it) my neck, which told them nothing.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Rosegirl » Fri Dec 13, 2013 9:53 am

It’s been a few months since I last posted here, and it’s time for an update.

This thread was started based on a suggestion by Dr. Michael Arata that those who did not respond to CCSVI treatment should consider seeking help from an Atlas Orthogonal or NUCCA trained chiropractor. He also said that additional help might be available from a neurologically trained dentist.

In this post, I’ll update everyone on what improvements I’ve had. Then I’ll do another on what I think the patient should look at when evaluating these kinds of treatments.

After eight months of treatment by an AO, I really didn’t see any benefit. Although she fixed my atlas and C2 that were significantly out of alignment, my walking never improved.

Thanks to Dr. Arata’s recommendation to talk to Dr. Williams (DDS), I tried an Aqualizer. Within 30 minutes of using this little plastic dental orthotic, I could walk better. Unfortunately, the improvement was short lived and inconsistent. But whenever something changed (or was changed by a doctor) around my jaws, I walked better for at least a little while. Dr. Williams was also responsible for the recommendation about using a tissue as a jaw separator mentioned earlier in this thread that also brought some neurological improvement.

All of my local doctors said I also needed to see someone who did cranial sacral therapy. That doctor replaced the AO since she was also trained as a chiropractor. Again, when she adjusted things around my jaw, I did better for a few minutes here and there. She also recommended custom orthotics for my shoes.

I began wearing the Aqualizer in the house where my slightly impaired speech didn’t matter. When I left the house, I removed the Aqualizer and used the foot orthotics. Again, there wasn’t any significant, sustained improvement.

Elsewhere on this site, I read a post from Dr. Brian Rothbart that said it’s important to wear both the dental and foot orthotics together. BINGO!

Thanks to this “hoof and mouth” approach, although the changes are still intermittent, I am clearly walking better for longer periods of the day. When I go up the stairs, I can lift my knee and bend my ankle to get my leg up to the next step. These are big changes that are noticeable to family and friends. Going down the stairs is also easier and I’m no longer using my hip to throw my leg where it needs to go next. I now can stand longer and move more when cooking dinner and clearing up. I’ve even been in the mood to clean up all those piles of things that have accumulated around the house because you just can’t carry stuff when you have to hold on bilaterally.

Best of all, these changes have been fairly consistent for the past two weeks! I am now encouraged to think that, while I may still need my scooter to go out to places like the shopping mall, I will be able to use a walker to go to visit friends and family that live in homes with stairs. What a huge improvement that will make in my quality of living!
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Re: When CCSVI fails, try AO and/or the Dentist

Postby DougL » Fri Dec 13, 2013 10:11 am

Rosegirl wrote:Best of all, these changes have been fairly consistent for the past two weeks! I am now encouraged to think that, while I may still need my scooter to go out to places like the shopping mall, I will be able to use a walker to go to visit friends and family that live in homes with stairs. What a huge improvement that will make in my quality of living!

yaay!
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Re: When CCSVI fails, try AO and/or the Dentist

Postby EJC » Fri Dec 13, 2013 3:39 pm

I am still astonished at the improvements generated by what appear to be minute adjustments or tensions placed on or around the jaw.

Great to hear you're getting somewhere Rosegirl.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby ProfessorRothbart » Thu Jan 23, 2014 5:38 am

Dear Rosegirl,

I am delighted that you are doing better. Make sure that your dental orthotic and foot insoles have been optimized to work synergistically. This should be done by your dentist and podiatrist.

with regards,
Professor Rothbart
Professor/Dr. Brian A. Rothbart
Chronic Pain Elimination Specialist
Discovered Rothbarts Foot & PreClinical Clubfoot Deformity
Developer of Rothbart Proprioceptive Therapy
Author: Forever Free From Chronic Pain, The Foot's Connection To Chronic Pain
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