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 May 25, 2013 4:23 am

I've entered a new phase with the AO chiropractor. Most of what has been done over the last seven months is correction and maintenance of the atlas and some gentle body work. As of this week, the doctor used one of those tables to manipulate my lower spine. Things rarely hurt, but that was uncomfortable. I'll be doing that twice a week for the next three weeks. Considering how stiffly I carry myself, I think it will be helpful. When I stand, I lock my knees and use my lower back to help keep me upright. Maybe this will get things more supple so I can move better.

I also tried a 30 minute deep tissue massage on my lower body (the chiro said not to go near the neck!). The therapist said that "deep tissue" was a misleading term and that it should not hurt or be uncomfortable. It was very relaxing and well worth a weekly visit if the calendar and wallet allow. Honestly, I think she sprinkled fairy dust on me!
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Music » Sat May 25, 2013 8:01 am

I went for my first treatment last week on a Cox table. By coincidence my youngest sister had started with this chiro two months ago. He’s close by, gentle and was a little skeptical as I’m in a w/c. I was worried about getting on my stomach and laying there for a treatment but with my husband nothing is impossible. Haha The treatment was like a good stretch….I’m pretty stiff sometimes. Chiro was surprised at how well it went…..next time he will use the straps on my ankles. Hopefully my hips will straighten out a bit. My left arm is not as stiff now.

Tests with the neuromuscular dentist went well but I was very tired after 2 1/2 hours. Next week I will get a permanent mouth piece.

Rosegirl, I too lock my knees….when I’m transferring tho and is a big help.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby vesta » Sun May 26, 2013 10:45 am

Hi Rosegirl:
I'm happy to see you enjoyed the benefits of massage. It seems obvious that if one has undergone venoplasty (as you have 2010-2012 ?) one should avoid working on the neck (and wherever work was done.) I have found a massage on the back, upper back and neck is enough to stop the blood reflex/attack but I've never had any intervention in those areas which might make massage dangerous. Massage is another therapy - really simple and generally available - I believe one should try before angioplasty. One could well be surprised by the benefits. (And I've come to think I stopped my first big attack - which struck the upper spine - with a Shiatsu massage.)

MS Cure Enigmas.net
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Rosegirl » Thu May 30, 2013 4:16 am

I finally went to see Dr. Whizbang to get fitted for an ALF. It is astonishing that someone who is clearly so bright and dedicated to healing people seems to be completely clueless about dealing with patients.

As at our first meeting, I walked in with my list of questions. He said that if I needed time for questions, he would be happy to schedule another appointment for a consultation (I guess that would be after the impressions were made and the devices ordered?). This is a guy who clearly just wants to be left alone to do his job and not have to deal with pesky humans. I assured him that my questions were few and simple to answer.

It’s a good thing that I had done a lot of research about the ALF because Dr. Whizbang apparently didn’t think I needed to know the following:

1. I would need two ALFS (upper and lower) instead of one. Of course, there was no discussion of what anything would cost.

2. When I asked how long I would have to wear them, he said we would know in 2-3 weeks if they were working. If so, I would need to wear them for a year. Well, no, maybe two years. Again, apparently no consideration at all for the impact of time, money and commitment of the patient.

3. My research said that one of the advantages of the ALF was that it would only have to be adjusted every 4-6 weeks. Dr. Whizbang said it would need adjustment every two weeks.

4. My research said that an ALF was sometimes used as a substitute for braces (which I could certainly use!), and that over time, it could change the alignment of the face. Dr. Whizbang had already been using ALFs, but these concepts seemed to come as a surprise to him.

5. Dr. Williams (the Canadian dentist) who was kind enough to advise me about this process had indicated that there would be a need for cranial-sacral therapy (CST). Both Dr. Whizbang and the AO chiro agreed. Dr. Williams had sent the chiro instructions of some CST to try, but the chiro declined because of a lack of training. Dr. Whizbang kept insisting that the chiro could do whatever was needed. I don’t know why he did that, so I sent him the email of what Dr. Williams wanted done. Maybe Dr. Whizbang will speak to the chiro about it. They seem to be colleagues who work together often and well. Or maybe not. . .

So molds were made and Dr. Whizbang said he would see me in five weeks to install the ALFs. Except that they require that I see the chiro the day after installation, which, of course, will be in the middle of the chiro’s summer vacation. I’m now waiting to hear from the chiro to see if I have to move this whole thing back another two weeks. Auggghhhhh!

It’s almost not worth it. Except for the fact that the day they snap those little puppies in, I might be able to abandon the scooter and be able to walk and climb stairs. As comedian Judy Tenuta always says, “It could happen!” From her lips to God’s ear. . .
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Re: When CCSVI fails, try AO and/or the Dentist

Postby EJC » Thu May 30, 2013 5:58 am

I admire your perseverance, it's difficult to stay focused and upbeat when faced with ambivalence from a specialist who is potentially in a position to help you.

I've Googled ALF braces and had a look through the images. This isn't a world away from what Amir is fitting to Emma (we'll many of the images - but by no means all).

The idea that these are adjusted periodically at fixed intervals doesn't quite ring true.

Emma requires adjustments of her appliances. Sometimes this is undertaken when a symptom flares or returns or disappears altogether. We even get a small key ourselves to make daily or alternate daily adjustments ourselves with some appliances. It wouldn't be daft to suggest that her body tells her when an adjustment is required.

When her appliances were first fitted Emma was seeing Dr Amir sometimes on a weekly basis until things settled in. How and when the appliances are adjusted is as important as the design of the appliances themselves.

Good luck, keep us posted.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby civickiller » Sat Jun 01, 2013 5:36 pm

when i was first dx i found a upper cervical chiropractor(c1 Atlas) which helped, heat sensitivity gone, no bladder incontinence, full energy, for a year then i stopped feeling any benefits
then i found an ebook called "The Gateway to 10,000 Diseases" by Robert Boyd which talks about the cranio bones being off and being 1mm off can have drastic effect on your health

my ms treatment is all ass backwards in my opinion
i went
1. upper cervical chiropractor
2. neuromuscular dentist then orthodontist
3. then after 3 year, after i get the braces all done, i want to go see a biocranial chiropractor

i say ass backwards because i should have went but try as you learn
3. skull- biocranial
2. jaw- jaw misalignment
1. atlas- upper cervical if needed
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Rosegirl » Wed Aug 07, 2013 3:34 am

I switched dentists about two months ago. "Dr. Whizbang" said from the beginning that he didn't understand how dentistry could affect neurologic conditions. Dr. Williams in Canada was kind enough to call him and turn him on to some new ideas, and that's why I had him do impressions for the device. But Dr. Whizbang and I never hit it off, and in a search for other ALF providers, I found Dr. Anthony Sims.

In my case, he thinks that there’s a problem with the trigeminal nerve signal not getting through. So that’s a completely different line of thought than CCSVI, atlas orthogonal or general cranial sacral therapy (CST).

Dr. Sims has published a paper on “ The Relationship between Posture and Equilibrium and the Auriculotemporal Nerve in Patients with Disturbed Gait and Balance” that now takes us into entirely new territory.

http://www.bodymovementdisorders.com/us ... osture.pdf

This is not something that the average dentist will know about, so you’ll have to do some investigation to find the right kind of dentist.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby EJC » Wed Aug 07, 2013 1:42 pm

There seems to be an awful lot mashed into that paper, much of which I admit I don't understand personally.

For non medical people like myself I sometimes need to ask straightforward questions to find out where someone is going with thinking of this nature.

Have you asked Dr Sims what his take is on MS? Or what he thinks the problem is?

I'd be interested to know his answer to a straight question "What do you think MS actually is?" It might be worth posing that next time you visit, if you haven't already done so.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby blossom » Wed Aug 07, 2013 5:35 pm

thanks rosegirl, for shareing this. maybe this utube i found will help us to understand. connecting those dots.

http://www.youtube.com/watch?v=QxnR3BurUdM


i know this here utube is not about ms but it is amazing what alf did for him.
http://www.youtube.com/watch?v=VrFVb4Bbnk4
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Music » Wed Aug 07, 2013 6:40 pm

Thank you for these links Rosegirl and blossom! Will send them onto my orthodontist....he loves this stuff and is very open minded. Is very knowledgeable in regards to what we talk about here.

Talks a lot about Dr. Nordstrom and has taken courses from Dr. Sims' colleague Dr. Stack.

Five to six weeks till I get my ALF.

Keep the info coming!
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Rosegirl » Thu Aug 08, 2013 4:33 am

Music:

Here's a question for your dentist. As I understand it (and I clearly do not understand much about this topic), the ALF will spread your jaws laterally. In my case, the jaws also need to be separated more vertically and the lower jaw moved forward. I think the main goal is to remove an obstruction of the trigeminal nerve.

If CST doesn't work, Dr. Sims will be using a device called a Neurocranio Vertical Distractor (NCVD). It's a removable device that can be made in less than a week. He wants me to wear it for four months. It will need adjustments during that time, I suppose to increase the vertical distance he thinks is necessary.

If I try the NCVD, I have several options. First, if it works, I will probably still need braces to realign my bite. Second, if it doesn't work and I refuse to have surgery, I'll spend another four months with the NCVD undoing what had been done. And finally, if the NCVD doesn't work, Dr. Sims thinks that surgery and 12-18 months of wearing braces might get me walking normally. It's all a big, expensive gamble.

Sure would be nice to have a miracle from the CST doctor. . .
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Re: When CCSVI fails, try AO and/or the Dentist

Postby blossom » Thu Aug 08, 2013 12:29 pm

hi rosegirl, hope you get your miracle. hope we all do. as you stated from your lips to God's ears.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Music » Thu Aug 08, 2013 6:35 pm

Rosegirl.

Have sent your question on to the orthodontist I am in treatment with now. Usually answers the next morning.

I will have to wait an additional 2 to3 weeks now for my ALF. From my visit to the orthodontist yest till my morning e-mails from him today, his plans for me have changed a bit. He’s sending my case to several colleagues and finding an osteopath here if it kills him. Haha This is in part to the links you and blossom had posted that I sent to him and our conversation yest at my appt. Thank you both again.

Yes, we are taking a big financial gamble. I’m questioning whether I should have gone to the neuro dentist at all – he and his staff were great – don’t get me wrong. My bite has changed for the better but will be changing again with the orthodontic treatment. Neuro dentist did refer me and I was in to see the orthodontist quickly after hearing there might be a long wait. I just don’t know……… I am a pretty frugal person otherwise.

Just in case anyone is wondering…….I am also seeing NUCCA chiros once in awhile, a chiro who uses a flexion distraction table – I am definitely straighter – come on hips! - and having dental treatment. One discipline is not going to help this bod! I used to be in fairly good shape – was very active….sigh.

EJC, the key thing you mentioned sounds like what we used for my daughter when she was going thru orthodontic treatment to widen her palate before braces. I wonder if they are the same appliances.
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Re: When CCSVI fails, try AO and/or the Dentist

Postby Rosegirl » Wed Aug 14, 2013 4:29 am

I've been seeing the cranial sacral therapist (CST) for about six weeks. Here's an update.

This CST doctor is trained as a chiropractor and lots of other specialties. She is also very intuitive and that makes sessions very fluid. You either like that approach or find it will be too unstructured. Personally, I like her approach and that she can use a variety of techniques.

When I first started seeing her, she strongly recommended a product called Asea (a SEE a). It's salt water, but it costs about $130 a month. Again, you either trust your doctor and do what you're told or find another practitioner. So I read up on it and decided to give it a try. Full disclosure -- it's a multi-level marketing company.

I can't say that I got any of the benefits that folks talk about on the Asea web site. But I immediately got hemangiomas (strawberry marks) all over my chest, back, stomach and thighs. Dozens of them, most as small as a pin point, but maybe a dozen that are the size of a pin head. And this week when she did work on my occiput (I guess it's finally moving -- who knew that was a good thing?), I've gotten dozens more, this time all the way down to my feet. This also happened to a lesser extent after my last angioplasty.

None of my doctors know anything about them, but that they don't think they are a problem. Except for looking like a pink Dalmatian dog, I think it means that there is more blood flow, and that seems like a good thing.

Is anyone trying the Aqualizer and/or Dr. Williams's tissue exercise? More on what's going on with that later!
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Re: When CCSVI fails, try AO and/or the Dentist

Postby PointsNorth » Wed Aug 14, 2013 10:51 pm

@Rosegirl - used four bottles of ASEA and no results. have read accounts of pwMS having pos. results though.
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