Re: MS and CCSVI

[Guest guest]

" Nicholls " peter.nicholls@... Wrote:

" fingers X for all those that try any proceedure where they think it will help

their situation "

I'll try almost anything at least once, especially when it comes to things that

may improve my health - I had an off-label replacement disk put in my cervical

spine in 2005, it is/was only FDA approved for thoracic use but had been used in

Europe for cervical disk replacements for over 10 years, the surgery turned out

great - but I sure don't like what I've read about this CCSVI treatment (my

sister has MS so I looked into it before possibly sending her any info).

Besides the serious risks involved with the procedure, I'm not sure the science

is right either - I have yet to find a single article that suggests a different

cause for decreased blood/CFS fluid flows in and out of the skull, one that I am

intimately familiar with - displaced or rotated C1/C2 vertabrae, that Atlas and

Axis (medically speaking, C1 is a bone, not a vertabrae, different

shape/function).

As a matter of fact, I just had both adjusted again yesterday during my weekly

chiropractic session, and I was suffering from a mild version of many of the

symptoms that CCSVI is claimed to cause - in the past, I've had severe issues

caused by C1 or C2 being out of position, and the problem gets even worse if not

treated immediately because the muscles in that part of the neck go into spasm,

pinching/compressing the CFS channels, nerve bundles, and blood vessels even

more. See this link for a neat animated GIF of CSF flow in the brain and neck

and other info (scroll down a bit, the image is on the right side):

http://wiki.ask.com/Cerebrospinal_fluid

See this page for an excellent explanation of the functions/position of the

Atlas (C1) and how critical it is for our well being:

http://www.atlantotec.com/index.php/en/Details-misaligned-Atlas-subluxated.html

Next, an article explaining craniosacral therapy, the techniques my chiropractor

(and acupuncturist) uses to adjust my skull and upper spine (as an aside,

contrary to what many may think, your skull is made from a series of plates,

i.e. it's not a solid hunk of bone, and those plates can move when you hit your

head hard on something like the corner of a table, leading to nasty health

problems, it's happened to me 3 times in the two years, I know own a hard hat

that I wear whenever the risk of hitting my head/something falling on it is

high):

http://en.wikipedia.org/wiki/Craniosacral_therapy

Articles discussing the various current theories on CCSVI (to my eyes, it's not

a scientifically proven cause or treatment for MS):

http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2944

http://en.wikipedia.org/wiki/Chronic_cerebrospinal_venous_insufficiency#Treatmen\

t

Now don't get me wrong, I'm not saying I'm right and the CCSVI treatment

advocates are wrong, but wouldn't you rather try a safe, proven to be effective,

and non-invasive treatment FIRST before going under the knife?

[Guest guest]

> Now don't get me wrong, I'm not saying I'm right and the CCSVI treatment

advocates are wrong, but wouldn't you rather try a safe, proven to be effective,

and non-invasive treatment FIRST before going under the knife?

>

Or you could look into Inclined Bed Therapy as a safe alternative to CCSVI:

http://andrewkfletcher.com/

Some seem to think he's a nutcase because he is so insistant this therapy will

do the same thing as a CCSVI operation. I thought it was worth a try and have

been sleeping inclined for a year now.

Actually I learned about LDN while reading at his website. An MS patient who

had great success with sleeping inclined was also taking LDN. Made me look into

what was LDN?

There hasn't been a tangible benefit from sleeping inclined for me, but the same

could be said for LDN - other than I'm not getting worse.

It's funny, my husband had to agree to sleep inclined for me to do it, and now

he's the bigger fan. He has herniated discs in the lumbar region and sleeping

inclined has helped immensely. He's had no further debilitating episodes of

back pain that used to last at least a week or more. Sleeping inclined is

supposed to put your spine in gentle traction, and it does seem to accomplish

this. My husband says he can feel his back pop into alignment while laying on

the inclined bed.

I have " reversal of normal lordotic curvature " in the cervical spine, and

protruding discs in the thoracic spine. It seemed sleeping inclined couldn't

hurt.

When I say I don't think it has helped my MS, my husband says, " You don't know

that. " True. Things could be worse, and I could be getting worse as well,

which is what usually happens with MS.

This was my first alternative treatment for my MS, and I do recommend it. It

may not do what a CCSVI operation would, but it's great for other back and neck

problems. It's also safe and cheap unlike a CCSVI operation.

K.C.

[Guest guest]

skystone42 " kcjlr@... skystone42

Tue Mar 8, 2011 3:56 pm (PST)

Wrote:

" Or you could look into Inclined Bed Therapy as a safe alternative to CCSVI:

http://andrewkfletc her.com/

It's funny, my husband had to agree to sleep inclined for me to do it, and now

he's the bigger fan. He has herniated discs in the lumbar region and sleeping

inclined has helped immensely. He's had no further debilitating episodes of back

pain that used to last at least a week or more. Sleeping inclined is supposed to

put your spine in gentle traction, and it does seem to accomplish this. My

husband says he can feel his back pop into alignment while laying on the

inclined bed. "

Interesting....does it work for side sleepers as well as back or stomach

sleepers? I have several mildly bulging cervical disks above the one I had

surgically repaired, plus at T7/T8 that causes me periodic aggravation, and

another at L4/L5 since I was 18 that has caused lower back pain ever since,

sometimes tolerable, sometimes severe, although it's only gotten bad enough once

in my life that we needed to consider surgery. About 3 years ago I was trimming

some tree limbs in my yard with one of those long heavy extension poles with a

scissors-type cutter head, and the pressure on my spine REALLY aggravated the

L4/L5 disk.

I had the wonderful (not!) experience of having terrible shooting sciatic pain

down my right leg for the first time in my life, almost drove me to tears it

hurt so bad, even after two shots of cortisone it wasn't any better. Since I was

already on LTD, the costs of surgery and rehab on my own were impossible to

face, but luckily my LLMD came to the rescue with an alternative treatment - IV

Colchicine.

Colchicine is an old oral gout drug, but by accident some doctor discovered that

high doses given intravenously (a series of 8 IV's overall) could also shrink

herniated disks, preventing needless and expensive spinal surgeries.

Unfortunately, a compounding pharmacy in Texas incorrectly made a batch of it 10

times too strong in 2007, resulting in the deaths of 3 patients, the FDA banned

pharmacies from making it, and the only manufacturer in the US stopped making it

for liability reasons. Doctors using it off-label to treat back problems were

also put under tremendous pressure by the FDA to " knock it off or we'll yank you

scrip license " .

After the ban was announced, my doc bought up every lot he could find and

stashed it away for his patients, so he still had some left when I had my disk

problem in mid-'08. It was a miracle! I went from barely able to walk to being

pain free after only 3 treatments, but continued to get all 8 just to be safe. I

was pain free for 2 years until last year, when I developed bone spurs in my

neck in the area where I had my C5/C6 disk replaced. I asked him if he had any

IV colchicine left, he said no, and even if he did he not willing to administer

it anymore, too much risk to his practice. He did hook me up with his old

partner who still had some, but convinced me to try oral colchicine instead, and

after several months the spurs had been dissolved and the pain was gone.

Unfortunately, I'll likely need to take it for the rest of my life...but now

that I think about it, didn't I read something posted in this group about an OTC

supplement that prevented unwanted calcium deposits and bone spurs? Perhaps

Betaine HCL and calcium/magnesium supplements together? I bought Betaine HCL

last week because the dreaded LDN-caused candida flare-up finally reared it's

ugly head after 3 weeks on LDN, coincidentally (or not?) after I took a 3 day

break and switched from night dosing to morning dosing. Also got my old yeast

fighters out of the closet, Candida Cleanse and some leftover Nystatin, which

I'm not sure is even active anymore (it's over 3 yrs old), but after one week on

all 3 my sugar cravings are gone, my digestive system is working much better,

and other symptoms have subsided, so some combination of the 3 drugs/supplements

is definitely working - and I didn't even have to go to the recommended strict

no sugar/no carbs diet,

although I have cut down my consumption of them by at least half - sugar was

easy, carbs not so much....I love my bread!

Back to you inclining bed - in conjunction with starting the oral colchicine, I

also purchased a " tilt-table " to help decompress my spine. Because of my neck

surgery, I cannot have " real " traction as it would put too much stress on the

replacement disk repair, so I'm limited to a 45 degree tilt, but when done

properly, boy does it work great! When done improperly it can cause serious

injuries....I've displaced my hips twice using it, once when I first got it and

it wasn't balanced properly, instead of a slow tilt backward I flipped

instantly, before I had gotten aligned on the table - a similar misalignment

caused another hip problem, this one not as severe - you have to be extremely

careful that the ankle grips grab your legs at *exactly* the same place on both

legs or you'll be pulling to one side or the other when you tilt, with ugly

results.

That's why I asked about side-sleeping with an inclined bed - it would seem to

me that position would unevenly stretch the body, with possibly bad results - I

sleep on my side, always have. I just bought a great mattress last year, so I'm

not interested in getting rid of it and my antique bed frame, but I could easily

put some blocks under the legs to incline the bed a bit.