This Is MS Multiple Sclerosis Community: Knowledge & Support

[civickiller]

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19597.html

UCRF Research Update
On February 18, 2012, the NUCCA procedure with a research update was presented to medical professionals and MS patients at the International Society Neurovascular Disease (ISNVD) Conference in Orlando, FL. The podium was shared with such renowned CCSVI Researchers as: Dr. Paulo Zamboni, Dr. Michael Dake, Dr. Robert Zivadinov, to mention a few.

Dr. Zamboni presented findings that CCSVI occurs in other conditions such as migraine and irritable bowel syndrome. The general consensus outcry regarded the lack of CCSVI research in the venoplasty 'Liberation' procedure. Of the estimated 10,000 patients undergoing the procedure since 2009, about 240 such patients have been included in case studies or investigational trials. A gold standard double blind clinical trial appears illusive, yet is mandatory to gain acceptance in the medical and insurance community. The inability of neurologists to accept the possibility that CCSVI actually exists underlies the lack of clinical trials. IRBs require a neurologist on the research team for any clinical trial, yet no neurologist aspires to jeopardize their career chasing perceived windmills. Dr. Jack Burks, the Neurologist Chief Medical Officer for Multiple Sclerosis Association of America, received much criticism from patients for not promoting more research into CCSVI. His solution was to have a meeting of health professionals to decide what to do.

While many patients were touting the benefits of the liberation procedure there was 20 to 30% who were interested in other approaches. The Liberation procedure does not work for everyone. There has been no study on this patient demographic thus predicting who the procedure works on or doesn't or for how long is near impossible.

A dentist from Glasgow stood up during the roundtable to describe a triage procedure addressing dental, TMJ and spinal issues (structural care) before considering Liberation. Patients who responded to structural care; TMJ, cranio-sacral work and chiropractic, did not require venoplasty or Liberation. Those patients where structural care was used prior to Liberation, success rates reported were 90% success rate over a year. It is unknown how long a patient benefits from the Liberation procedure. He urged a sensible triage procedure be used looking at structure before surgery. His advice to me was 'not to give up bashing heads with those guys (MD's); they will have to get it.'

The reality is that anecdotal information from the internet supports the theory that Upper Cervical Chiropractic helps in MS especially helping those where Liberation failed. After the NUCCA presentation, many failed liberation patients sought advice in search of a NUCCA practitioner. Many cards were passed out referring them to the NUCCA web site. There clearly is demand for NUCCA care in the MS population particularly those patients of failed Liberation procedures.

Conversations with Dr. E. Mark Haacke, who has developed a 'gold standard' imaging procedure to diagnose MS and CCSVI, led to an expressed desire to collaborate on any project once money was raised to conduct it. He is willing to brainstorm any ideas that could lead to any such collaboration. He suggested introduction of his procedure with the imaging center where the Migraine study Phase Contrast MR is being conducted in Calgary. Dr. Haacke and I were the only presenters who alluded to the possibility that CSF flow or lack thereof played a role in CCSVI and MS.

I was able to connect with Dr. Franz Schelling. He provided the MS venous flow mechanism theory and supporting research Dr. Zamboni used in developing the Liberation procedure. Dr. Zamboni awarded Dr. Schelling the ISNVD Gold Medal for his contribution to CCSVI Research. Dr. Schelling sent an MS patient to Dr. Hasick for NUCCA care. He believes the Atlas misalignment effects the veins as a mechanism, stating the CSF flow plays a minor role. Dr. Schelling considers NUCCA ideal for those patients with high upper cervical venous restrictions, where it is impractical and dangerous to use balloon venoplasty or insert stents.

The President of the CCSVI Alliance, Sharon Richardson, is very interested in NUCCA care thanks to Dr. Mike Flanagan and internet anecdotes. Two years post Liberation, she now suffers foot drop, unrelieved by standard chiropractic care (Activator). Dr. Michael Dake from Stanford performed Sharon's procedure. Her good friend, who was also liberated by Dr. Dake, reports great success in receiving NUCCA care from a certified practitioner. Her friend has not felt this well in many years, even after her Liberation procedure. As a result, Dr. Dake is very curious and shows interest in collaboration. Ms. Richardson lives in Denver where there are no certified Doctors.

While the internet abounds in advice for MS patients to seek Upper Cervical care, the ISNVD Conference provided an ideal venue to educate MS patients and Medical Doctors to the research based Chiropractic procedure, NUCCA.

[zanne10000]

I've been seeing a NUCCA chiropractor for about a year and did so before I was treated for CCSVI. I first heard about them from the Upright Doc's blog. Dr. Flanagan has great info on his site regarding the connection between MS (and other neurological disorders) and misalignments in the axis/atlas area. There was a really cool article about skull shapes (ethnicity) also. Highly recommend anyone curious about NUCCA to take a look at his blog!

[civickiller]

what i found interesting was the dentist part, is that needed with UCC or as one Dr claimed after dental work the atlas didnt need UCC ?

[imMSunderstood]

I wish I could report better results from Atlas Orthoganist care. I had CCSVI procedure in November 2010 and I noticed no improvement. My next goal was to look at my structural alignment. So July of 2011 I started seeing an Atlas Orthogonist. He used a percussion instrument to align my atlas and I was immediately able to rotate my head about 50% more than I could just 3 minutes prior. I was so excited that I cried right in front of him. I was so hopeful at the prospects for at least the stabilization of my disease progression. Unfortunately it has been 8 months and I am still steadily declining. I've taken all of his recommended supplements and I've tried to follow his anti allergenic diet (albeit not 100% probably 96%). He did just test me for heavy metals and I am extremely overloaded with lead. I'm now looking at the best way to "get the lead out". So I am researching near or far infrared saunas and trying to get an idea of the best protocol to follow. I want to become a tibetan monk and go 85% raw drink 12-14 juices a day, drink 4 glasses of water, get outside for at least an hour a day and ramp up on niacin before I do 30 min of exercise followed by 20 minutes in the spa, Man, I'm exhausted just typing that protocol. I don't know how I'm going to do it but I feel what I am doing isn't enough so onward and upward.

[CureOrBust]

I wish I could report better results from Atlas Orthoganist care. I had CCSVI procedure in November 2010 and I noticed no improvement. My next goal was to look at my structural alignment. So July of 2011 I started seeing an Atlas Orthogonist. He used a percussion instrument to align my atlas and I was immediately able to rotate my head about 50% more than I could just 3 minutes prior. I was so excited that I cried right in front of him. I was so hopeful at the prospects for at least the stabilization of my disease progression. Unfortunately it has been 8 months and I am still steadily declining. I've taken all of his recommended supplements and I've tried to follow his anti allergenic diet (albeit not 100% probably 96%). He did just test me for heavy metals and I am extremely overloaded with lead. I'm now looking at the best way to "get the lead out". So I am researching near or far infrared saunas and trying to get an idea of the best protocol to follow. I want to become a tibetan monk and go 85% raw drink 12-14 juices a day, drink 4 glasses of water, get outside for at least an hour a day and ramp up on niacin before I do 30 min of exercise followed by 20 minutes in the spa, Man, I'm exhausted just typing that protocol. I don't know how I'm going to do it but I feel what I am doing isn't enough so onward and upward.

I applaud you on your thoroughness! A little off topic, but the niacin-exercise effect interested me, so I looked on google, and found the following:

Among niacin’s other effects, when taken in large doses of 1 to 3 g per day, is an acute elevation in growth hormone secretion . This is a delayed effect, frequently occurring 3 to 5 hours after taking niacin. This effect is independent of exercise.

Still, if you time your exercise session to about 300 min after taking niacin you may have some extra benefits, because getting that peak growth hormone secretion at the time you are exercising may help boost some of the benefits of exercise.

http://healthcorrelator.blogspot.com.au/2010/06/niacin-turbocharges-growth-hormone.html
may, shmay

You may also wish to look into Inosine and the uric acid relation with MS, with your try everything approach. Time now for me to load up on B3 and exercise...

[MicroX]

I wish I could report better results from Atlas Orthoganist care. I had CCSVI procedure in November 2010 and I noticed no improvement. My next goal was to look at my structural alignment. So July of 2011 I started seeing an Atlas Orthogonist. He used a percussion instrument to align my atlas and I was immediately able to rotate my head about 50% more than I could just 3 minutes prior. I was so excited that I cried right in front of him. I was so hopeful at the prospects for at least the stabilization of my disease progression. Unfortunately it has been 8 months and I am still steadily declining. I've taken all of his recommended supplements and I've tried to follow his anti allergenic diet (albeit not 100% probably 96%). He did just test me for heavy metals and I am extremely overloaded with lead. I'm now looking at the best way to "get the lead out". So I am researching near or far infrared saunas and trying to get an idea of the best protocol to follow. I want to become a tibetan monk and go 85% raw drink 12-14 juices a day, drink 4 glasses of water, get outside for at least an hour a day and ramp up on niacin before I do 30 min of exercise followed by 20 minutes in the spa, Man, I'm exhausted just typing that protocol. I don't know how I'm going to do it but I feel what I am doing isn't enough so onward and upward.

I think more research should be done on the connection between lead and MS. I also tested for extremely high levels of lead and have MS. My lead situation was chronic in that the lead originated from a 2.5 year exposure to chrysotile asbestos from Rhodesia (now Zimbabwe). The lead in the asbestos was confirmed by independent lab testing to be 38 ppm. During the acquisition of the asbestos about 40 years ago, my body tried to resolve the problem by storing the lead in the bones as the asbestos was reduced to its substrate form for removal from the body. The body cannot remove filaments without breaking it down. The lead is virtually impossible to remove from the body without help. As long as the toxic burden exceeds the body's ability to remove, it is stored. This can go on for decades creating all kinds of physical problems. When a healthful lifestyle is initiated toxin storage is reversed and the body mobilizes the stored debris. If this debris is not removed it builds up and is clearly visible in circulation. The higher and more numerous the toxins (and pathogens they support in circulation) the more symptoms will manifest.

I was a research microscopist prior to training as a Live and Dried Blood Analyst just before my MS diagnosis in 2002. It has taken me till now to unravel everything that has resulted in my MS, but the lead containing asbestos was the worst contaminant. From 2006 to the end of 2008 my lead levels escalated along with all the MS symptoms to levels never before measured by Vegas testing in any other individual. It took me till the beginning of 2010 to notice the first signs of lead abatement via live blood analysis and Vega Testing. As my lead levels continued to decline so did my MS symptoms.

I have documented this journey with MS microscopically and have all the related testing.

What I had to do to reduce much of my MS was:

2 years on the Dr. Max Gerson protocol for people with heavy metals intoxication (this is half that is used for cancer patients)
1 year on L. Ron Hubbard Clear Body Clear Mind program without the sauna which I could not tolerate
WSN foodform supplements which improved detoxification by about 50% on the Hubbard program
Hulda Clark Organ Cleanses - total 70+ liver, kidney and parasite cleanses
15 - 3 week Arise and Shine Bowel Cleanses, each one to include 2 colonics
4 years on 1 or 2 coffee enemas every day
2007 - till present Glauber Salt Lead Removal Procedure every 2 months for lead removal from circulation + Hulda Clark organ cleanses
Chlorella, UMAC Core, Alpha lipoic acid. cilantro pesto for heavy metal removal from the bowels

The first part of the program cleared the organs and improved their functioning. The last 2 items create a low concentration zone of heavy metals that draw out the heavy metals from higher concentration regions in the body. You will know when you should repeat the last 2 cleanses since you will feel increasingly unwell until you will want to do the cleanse to feel better. This is a condensed version of what is involved. In addition to the above I have to use herbal and homeopathic aids. Once the lead particle size started to decline I had to use more homeopathic and acupuncture treatments.

I would suggest reading the Gerson and Clark books very carefully, because removal of heavy metals can be quite hazardous, especially to the liver. One of the big dilemmas is that it is hard to know just where and how badly the body is affected and hence how much has to be done to reclaim good health. I would never have believed in my wildest nightmare that I would have to go through the above for 10 years.

Doing a check on historical exposure to toxins as well as testing for all the common toxins in a Vega Test, can be most insightful.

[imMSunderstood]

Wow that was great info Cure and Micro. I have got a lot of fascinating ideas for future research. I love it. Thanks for pointing me in some new directions.
I am a year now since starting with my Atlas Orthogonist and I can definitively say that I am much better from the neck up (no pun intended). I am off of anti-depressants and Adderall. My fatigue is almost gone. It is better now (without the stimulants that I've relied on for 14 years) than it was while on them. It is not the relentless monster it used to be. I've got my mojo back. I just wish the rest of my body got the memo.

I don't have any follow up x-rays yet to determine if my cervical and lumbar is better aligned, but I know my chiropractor was surprised at how often my atlas "held" the original correction. After a year of visits, I only needed my Atlas adjusted three times. One of those adjustments was brought on after I fell down a flight of steps. I guess my point to all this rambling is that I agree with many here that structural problems do need to be a part of the protocol but there are so many other possible triggers to our MS mystery.

[fraser]

Wanted to share some info on NUCCA (National Upper Cervical Chiropractic Association)…a specialized form of chiropractic treatment. It's extremely gentle (no neck cracking!), and my husband has had amazing results (diagnosed with PPMS in 2009, and has also had CCSVI treatment in Poland in 2010). There only seems to be one doctor in Toronto that's trained in it, so we've been going there…an excellent clinic. We heard about it from a Canadian doctor who we've been consulting with (who also has MS). After treatment my husband has had better mental clarity, balance, less dizzy and is sleeping better, and he's only had 3 adjustments. He had a huge misalignment, which can cause nerve issues, and other MS like symptoms. Atlas Orthogonal is what Montel Williams has been doing…same thing only they use an instrument to realign instead of a manual approach. I won't say anymore since the videos do a better job of explaining how it works.

Life Balance is the clinic we go to in Toronto - we see Dr. Siqueira who you'll see in the video:
http://www.youtube.com/watch?v=jEhNNvL4Uf0

This is an interesting testimonial that seems sincere:
http://www.youtube.com/watch?v=eMDj8SSOVgs

Montel Williams talking about his experience with this treatment:
http://www.youtube.com/watch?v=qMfzFXI7ch8

Really worth checking out!

[Shueywho]

fraser thank you for posting that. I have just recently become aware of this. I was wondering who in Ontario was doing this. My partner had the procedure almost two years ago, and the brain fog, heat intolerance and fatigue are setting back in. The brain fog especially, she is becoming very confused again. She had some amazing results in Albany, but I would like for her to try this as it is close to home and may be part of the continuing puzzle of ms.

So you are happy with this doctor and clinic? I went to their website and watched the video you linked to and am pretty set on contacting them. Do you have any other information you could offer?

[jimmylegs]

heyyyy brantford, i was just down there for grand river champion of champions

[gibbledygook]

Jeez, I must say lead poisoning is something I haven't yet considered!

I went to Heidi grant, the only uk based nucca practitioner on Friday. I felt a vibration around the upper cervix close to the stents, eek. That night I slept incredibly well but didn't notice much else. I'm quite excited by the treatment and will update in due course.

[CureOrBust]

Life Balance is the clinic we go to in Toronto - we see Dr. Siqueira who you'll see in the video:
http://www.youtube.com/watch?v=jEhNNvL4Uf0

I know, completely off topic, but did you notice this girls fingers can bend backwards at the middle joint!

[vesta]

Chiropractors believe that a misaligned Atlas bone can impede circulation of cerebrospinal fluid (CSF) leading to neurodegenerative diseases such as MS. This idea would seem to parallel the CCSVI theory of MS as a blood circulation vascular disease. The therapies which enhance blood circulation should also enhance circulation of the cerebrospinal fluid. Chiropractic as well as Osteopathy (as practiced in France) can adjust the actual physical structure of the back and neck. (Acupuncture can't do that alone.) I have recommended neck/back massage, acupuncture, self acupressure, osteopathy, kinesiology, chiropractic, and swimming to enhance blood circulation. All these activities should enhance circulation of the cerebrospinal fluid as well, but if the bones are misaligned they will need physical manipulation to get them in place. If a vein draining the CNS is blocked angioplasty will be required to open it. It is interesting to note how the issues of vascular blood circulation and cerebrospinal fluid circulation converge in Chinese Medical theory (which seeks to enhance energy - "chi" - circulation in general.) The Bladder meridian begins in the inner eye socket, runs over the head down the neck and down the bands of muscles on the back to finish at the feet. The bladder/kidney meridians belong to the water element which rules fluid circulation, cold, north, winter, wet, fear, and ambition. Note how this element describes Northern Protestant Europe where MS is found in greatest numbers. The Meridians which begin on the head and run down the neck or back (gall bladder and bladder) are used to treat MS which makes sense if MS is caused essentially by problems with fluid circulation from the brain and spinal cord.
My treatment required De-Toxification and Kinesiology determined diet (more or less Paleo-Macrobiotic diet -Glutens and Dairy especially a problem)
Supplements (Mostly Standard Process)
Blood circulation or energy therapies such as acupuncture, daily self acupressure, swimming, kinesiology, osteopathy or chiropractic for structural adjustment. In my own case I can feel the blood backing up into my brain when stressed and have found a simple neck massage (a minute will do) forcing blood down towards the heart will stop it. De-toxification and optimal nutrition serves 2 purposes: 1) Removes stress on the vascular system in order to reduce blood reflux and 2) heals damaged tissue. I definitely think one should try the "manual" option before the "medical" ie angioplasty. Actually people with MS can do alot to help themselves. If you can't visit some renowned chiropractor, find the nearest available and explain what you need. Try simple neck massage or self acupressure to stop an "attack" if you can feel the blood reflux. Buy a powerful vegetable juicer and begin to extract raw veggie juice to de-toxify. Some healers are better than others, but there is no one indispensable person. I myself think I have a blood reflux problem (CCSVI) but feel I can control it through "manual" treatments. I use osteopathy (France) periodically to adjust my "skeleton". And I don't put up with stressful people like I used to. More at MS Cure Enigmas.net

[gibbledygook]

I have now had 3 NUCCA adjustments and I can report no benefit from this...the hunt goes on... I am slowly improving from my treatment with Prof Sclafani and coming off anticoagulants.

[vesta]

I myself use chiropractic adjustments when my back/neck is out of place and find no other particular benefit. Rather, manual therapies which enhance blood circulation control my MS. I'm not going to risk angioplasty because I'm doing OK. I wrote the above because NUCCA adjustments appear theoretically plausible, but I have no personal experience. Always happy to hear about Prof Sclafani's work and hope the best for you.