I now have a theory about what happened to my wife.

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

I now have a theory about what happened to my wife.

Postby DougL » Mon Mar 25, 2013 5:13 am

I now have a theory about what happened to my wife.

first CCSVI treatment was in Germany. Doc forced the balloon in the left jugular so much that my wife was screaming in pain. he was forced to stop (even though she said keep going - all the pwMS know that feeling) because he was afraid he was hurting her too much. 100% improvement in her walking (plus other improvements). the walking lasted 3 months. no neuro, no IR, no one can explain to my satisfaction how the ballooning of a jugular can improve walking so quick.

second treatment was with Dr S. He discovered the reason my wife was screaming so much. there was a bone that was against the jugular and my assumption is the doc in Germany was pressing against that bone causing pain. the doc in Germany did not use IVUS.

thankfully, Dr S was able to confirm that no damage was done in Germany but he also said there was nothing he could do to that side of her neck (actually he did get her an extra mm I think).

unfortunately, my wife's walking did not improve this time (but she did get other improvements - mental, eyesight...). for more than a year I have tried to understand it. also during that time (plus before) my wife always felt that she was crooked - off in the lower back, hips. we just assumed it was from years of compensating for MS weakness on the right side.

we have investigated Atlas stuff and I felt there could be some connection. well, on Saturday we finally went to see a NUCCA specialist. what he told me shocked me. I always thought that pain in the lower back was caused by problems in your lower back. the Doc explained that the cause is usually the Atlas. it was a very scientific explanation that really made sense.

then it hit me.

my theory is that the doc in Germany pushed the bone (Atlas or one very close to it) while he was ballooning my wife's jugular. he pushed it far enough that it gave instant relief in her walking - numbness, weakness, etc. (note - it did not affect her drop foot but she now had the strength/control to compensate for it)

the NUCCA doc did his exam and said that my wife was very very crooked. he did a little twist with his arms out and said if that was 75 cents, her Atlas is about 4 or 5 dollars.

I am now very hopeful that the NUCCA doc can improve her walking again. the adjustment begins next week,

CCSVI is not a cure for MS. NUCCA is not a cure for MS. but they do offer improvements in quality of life and who knows what the future holds in terms of progression. healthy blood flow and proper back alignment can only be good for people.
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Re: I now have a theory about what happened to my wife.

Postby dania » Mon Mar 25, 2013 5:38 am

Isn't amazing how many of us are discovering that our Atlas is misaligned? It would be very interesting if everyone with a diagnosis of MS had their Atlas checked.
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Re: I now have a theory about what happened to my wife.

Postby Cece » Mon Mar 25, 2013 9:17 am

Has she had a CT scan? Those show both the veins and the bone. In addition to the atlas, there is the styloid process that extends off of the skull itself. The styloid process can be extra long and cause problems (Eagle syndrome) or it can possibly be damaged in an accident and jammed out of position compressing the jugular. Unlike the atlas, the styloid process can be surgically removed if necessary.

I hope the NUCCA does the trick. How exciting to think that it might.
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Re: I now have a theory about what happened to my wife.

Postby DougL » Mon Mar 25, 2013 10:06 am

Cece wrote:Has she had a CT scan? ...

not to my knowledge but the Doc took a whole bunch of pictures on Saturday (xray i think). i hope he has a better picture (no pun intended LOL) of what is going on in her neck. we shall see (no pun intended LOL)next week.

I did mention my theory to him so he atleast knows some of what happened with Dr S and Germany. he also told us he has another MS patient who eventually settled down to once every month or two for re-alignment. he said the guy knows exactly when he is getting out of alignment - his "MS" symptoms return.

of course, both myself and my wife are keeping all eyes open - for all we know, this doc is a crock and will tell us anything to keep up treatment.

Cece wrote:I hope the NUCCA does the trick. How exciting to think that it might.


since i first logged on here and started to read about CCSVI, my wife has been filled with hope.
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Re: I now have a theory about what happened to my wife.

Postby dania » Mon Mar 25, 2013 10:30 am

Are you near an Atlas Orthogonal chiro? I know of one in Markham Ont, who is treating his brother who has MS.
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Re: I now have a theory about what happened to my wife.

Postby DougL » Mon Mar 25, 2013 10:44 am

dania wrote:Are you near an Atlas Orthogonal chiro? I know of one in Markham Ont, who is treating his brother who has MS.

not sure what Atlas Orthogonal is. The guy we are seeing only ever talked about the Atlas. he also said, this machine that took the pictures will give him a whole set of numbers and angles and vectors for her treatment (is that Orthogonal).

The place is called Atlas Spinal Care in Mississauga
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Re: I now have a theory about what happened to my wife.

Postby dania » Mon Mar 25, 2013 11:09 am

So Markham would not be far from you.You said he was a Nucca chiro. Not the same. Nucca is done manually and AO is done with a machine using the vectors. Watch the video. Totally painless, you feel nothing. When placed on the table in the correct position, it takes 2 seconds.
http://www.youtube.com/watch?v=O9wziwsu6QQ
Here is Dr John Baird AO chiro. His brother has MS who he is treating with AO adjustments.
http://www.clinicbook.com/dr-john-w-baird
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Re: I now have a theory about what happened to my wife.

Postby DougL » Mon Mar 25, 2013 11:44 am

thanks dania. we will wait and see what is being offered by this guy first but Markham would be a possibility.

the main reason is because my wife was very happy with him (bedside manner etc)
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Re: I now have a theory about what happened to my wife.

Postby David1949 » Mon Mar 25, 2013 12:25 pm

I had the CCSVI treatment in Chicago about 1 year ago. I also experienced excrutiating pain, and not just at the location of the balloon. It felt like my head was exploding too. I my case it was me who chickened out, not the doctor. He was able to improve the left jugular somewhat. But the right jugular was very skinny over its entire length and the doctor refused to balloon it for fear of causing blood clots. My walking ability did not improve, but the procedure may have given me somewhat more energy.

I also went to a NUCCA doc for several months prior to the CCSVI treatment. It seemed to help a little although not too much. NUCCA is totally benign though. There is no pain and very little chance of harming you, so it's definitely worth a try. It is also less expensive than CCSVI treatment and way less expensive than the CRAB drugs. I hope it works for your wife.
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Re: I now have a theory about what happened to my wife.

Postby Bubs » Mon Mar 25, 2013 3:04 pm

Don't be concerned whether you see a AO or NUCCA chiropractor as they both achieve the same result just different techniques. Reading the X-Rays to determine the adjustment required is the most important ability, but if your chiropractor is qualified in either technique then it shouldn't make a difference.

Not to say it can't achieve the same results, but from what I understand another method called Atlas Profilax requires less training to be qualified so personally I would avoid anyone who performs this technique.

Everyone is different and holding your adjustment can be a long process. To help hold I've seen an osteopath, as I've had shoulder and muscle injuries that were unresolved for years. I've also started swimming to build up and get my muscles working correctly. My advice is to address any injury you have with your body (even dental/TMJ see Dr Amir threads or even mental stress) and get your body in your best shape as possible. You know your body better then anyone else.

I've been doing it for five years and overall I'm better, although ironically I wasn't diagnosed with MS when I started. I've explained this all to neuros in great detail and even showed them before and after pictures of my posture changes to counter any placebo suggestion, but I've yet to meet one who knows what it is, understands why it's related and simply can't answer why I've improved (i've never taken any drugs or had CCSVI).

I fully concur with DougL last paragraph I just wished the 'accepted' medical world would take note and think outside the box.....or should I say their textbook, which basically can't explain what causes or can cure MS!
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Re: I now have a theory about what happened to my wife.

Postby Music » Mon Mar 25, 2013 8:58 pm

Totally agree with Bubs. An AO or NUCCA chiro are practically the same – just use different techniques for your adjustment.

I was very crooked too DougL. My first adjustment was a WOW moment…..big change….totally painless. Sit much straighter in my wheelchair. I held my adjustments off and on for almost two years but my last one has held for eight months thus far. Everybody is different tho. NUCCA has been a great fix for me and I highly recommend your wife tries it. Love my NUCCA chiropractors.
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Re: I now have a theory about what happened to my wife.

Postby EJC » Tue Mar 26, 2013 11:24 am

This is fundamentally how we ended up see Dr Amir in London.

Emma had been seeing Chiropractor for a few weeks who was realigning her C1 (Atlas) each time she went. During this period she had also developed a jaw pain that got worse and worse until she was unable to chew. That's what lead us to a dentist to start with.

We went to See Dr Amir who confirmed the Atlas was misaligned - but was actually due to jaw misalignment. So the C1 being out was a symptom of TMJ issues - which in turn was causing a raft of symptoms that had been attributed to MS.

After the first three months of treatment Emma's Atlas was checked - and found to be correctly positioned without any direct manipulation of the neck - that's when she started recovering from some "MS" symptoms. The Jaw pain was eradicated in a week and never returned.

It's worth checking of the C1 misalignment is actually an indicator of other issues.
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Re: I now have a theory about what happened to my wife.

Postby Amir » Tue Mar 26, 2013 3:28 pm

It has been a long time since I wrote anything about the Atlas.

I shall try and enlighten you with my experiences over the last year or so.

I start many new patients each month. Almost all of them have Atlas/Hip asymmetry at the outset.

About a year or more ago I decided that I am not going to correct the Atlas first but sort the jaw out for a few months and then re evaluate.

Surprisingly I have only had to correct one Atlas in the last 3 months. All the rest corrected with orthodontic/TMJ treatment.

When the Atlas is out of synch the hips are also always out of level. When the Atlas corrects the hips level out.

Therefore in general a patient can self check their hips to know if the Atlas is out. The higher hip when palpated just above the iliac crest is always relatively more painful than the lower side. When level the pain disappears.

Experience also shows that, very rarely, the hips are out of line on their own without Atlas involvement. These can be quickly corrected with a traditional chiropractic adjustment which is a very straight forward procedure requiring only a couple of minutes effort.

Atlas symmetry, jaw/dental symmetry and hip symmetry appear to be very interdependent and major players in overall skeletal symmetry and hence optimal function.
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Re: I now have a theory about what happened to my wife.

Postby DougL » Wed Apr 03, 2013 4:52 am

hokum, pure hokum.

before i start i have to preface by saying the appointment started bad. doc was late and she was hungry. hungry is very bad.

went to have first consult with doc. he spent a few minutes explaining the x-rays (gotta justify the cost right?) and i kept picturing Sheldon and his hokum meditation scene. anyone can take an x-ray and show signs of being 'off' a bit.

when he did the actual treatment, i almost laughed. it was kind of a ritual massage. no pain or twisting or anything but gentle massage.

the results...

before he starts, he stands her up (with my assistance) and asks her to turn neck side to side. "it feels 'crunchy' when i turn right"

he then laid her down and said he was going to hurt her - he had to touch three spots and get her reaction. my wife is not good with pain. she screams.

the first spot - scream. second - more scream. the third was okay.

less than 30 seconds of NUCCA. all three spots were painless.

stands her up again (with his assistance this time) and asks her to turn her neck. "crunchy is gone. feels almost the same as turning left"

a few more NUCCA adjustments. turning neck is now the same going left or right.

now for walking. doc says walk to the door and back. i hand her the cane and she walks once and then twice. during second trip doc asks how she feels (he first warned her that some people are week and light headed after treatment) but she answered "i don't know, it feels the same".

i looked at her and said "then why aren't you using the cane?"

she didn't even notice she was carrying the cane instead of using it.

there were several more adjustments.

i noticed there were definite improvements in her walking. normally she walks by flipping her leg out to the side instead of lifting it up. she was now lifting it with ease.

her comments - more strength and less numb.

another observation - as the treatments went on, i could see her strength increasing. by the time she reached the end, she was standing herself upright without any assistance. is this placebo because she believes the treatment is working?

when we left the office, she handed me the cane and said she wanted to try walking herself. she smiled and said "i'm walking normal"

when she gets in the car, normally she has to lift her right leg using her hands. this time - not so much. driving home, she commented about feeling "more centered". not leaning to the right (her week side).

my observations continued at home. an increase in strength, balance, and coordination of her right side. i would say she now has control over her right leg whereas a few hours earlier she did not.

the skeptic in both of us continue to think this was all due to placebo - she wants it to happen so badly. we can only pray that the placebo continues. more treatments to come.

one of the best things about the whole experienece is that we did not discuss MS. NUCCA is not a cure for MS. i am sure my wife's MRI would be the exact same today as it was yesterday.

its all about quality of life.
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Re: I now have a theory about what happened to my wife.

Postby Amir » Wed Apr 03, 2013 8:27 am

DougL wrote:hokum, pure hokum.


less than 30 seconds of NUCCA. all three spots were painless.

stands her up again (with his assistance this time) and asks her to turn her neck. "crunchy is gone. feels almost the same as turning left"

a few more NUCCA adjustments. turning neck is now the same going left or right.

now for walking. doc says walk to the door and back. i hand her the cane and she walks once and then twice. during second trip doc asks how she feels (he first warned her that some people are week and light headed after treatment) but she answered "i don't know, it feels the same".

i looked at her and said "then why aren't you using the cane?"

she didn't even notice she was carrying the cane instead of using it.

there were several more adjustments.

i noticed there were definite improvements in her walking. normally she walks by flipping her leg out to the side instead of lifting it up. she was now lifting it with ease.

her comments - more strength and less numb.

another observation - as the treatments went on, i could see her strength increasing. by the time she reached the end, she was standing herself upright without any assistance. is this placebo because she believes the treatment is working?

when we left the office, she handed me the cane and said she wanted to try walking herself. she smiled and said "i'm walking normal"

when she gets in the car, normally she has to lift her right leg using her hands. this time - not so much. driving home, she commented about feeling "more centered". not leaning to the right (her week side).

my observations continued at home. an increase in strength, balance, and coordination of her right side. i would say she now has control over her right leg whereas a few hours earlier she did not.

the skeptic in both of us continue to think this was all due to placebo - she wants it to happen so badly. we can only pray that the placebo continues. more treatments to come.

one of the best things about the whole experience is that we did not discuss MS. NUCCA is not a cure for MS. i am sure my wife's MRI would be the exact same today as it was yesterday.

its all about quality of life.

Excellent and commendable result - highly unlikely to be a placebo effect.
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