My strange unexplainable liberation procedure

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

Postby cheerleader » Thu Mar 04, 2010 7:38 am

really quickly, since this is OT....the "folding" in the IJVs happens when the body is upright. When lying flat, the jugular should be open, since the IJVs are the exit route for deoxygenated blood when in a supine position. When standing, the vertebral veins take most of the blood. So, the MRVs showing stenosis while lying flat and fat collaterals show a true stenosis. Kind of strange your docs didn't know this- it's basic anatomy.
http://www.ncbi.nlm.nih.gov/pubmed/15284348

HTH,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Inge67 » Thu Mar 04, 2010 7:52 am

Cheer! you're the best! :D

You can imagine I had a bad night sleep over this: do I really have a stenosis or not? Thank you VERY much.

Hope all is well. (sorry OT)

Inge
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Strange occurrence...

Postby aliyalex » Sun Mar 07, 2010 1:35 pm

is there a correlation to: 1) RR diagnosis and 2) presence of relapse during first scan?
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Strange occurrence...

Postby aliyalex » Sun Mar 07, 2010 1:35 pm

is there a correlation to: 1) RR diagnosis and 2) presence of relapse during first scan?
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Postby IbRiz » Sun Mar 07, 2010 1:44 pm

Inge - if your jugulars are showing stenosis when you are lying flat - you may just benefit from sleeping inclined - if you are not already. It did miracles to my MS (I have a collapsed left internal jugular, according to dr Simka).

christian
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Re: My strange unexplainable liberation procedure

Postby Apuman » Sun Mar 07, 2010 5:25 pm

prof8 wrote:Do stenoses come and go? If they do, they might not always show up on a scan. If it is congenital how come the 90% blockage disappeared? Are they more an inflammatory reaction since they might not be permanent?


That last sentance has got me thinking.

Before I learned of CCVIS, I had been persuing treatment with helminthic organisms (hookworms, namely) because it seemed to be so effective againtst not only MS, but for a whole array of auto immune disorders.

Then, come December, I learned of CCVIS and Liberation. I was scratching my head big time. How could these two radically different treatments both be showing so much sucess? Would the hookworms take enough Iron out of the blood to avoid creating deposits? The MSers with anemia seemed to throw that theory off. Ever since, I've been looking for a way to reconcile the two ideas.

Now you mention inflamation as a possible cause of CCVIS. Inflamation is a common thread throughout autoimmune diseases, and seem to respond remarkably well to hookworm infections. What if hookworms infections alter the immune system in a way that could prevent the inflamation that causes CCVIS?

For an earlier discussion on helminthic treatments:
http://www.thisisms.com/ftopicp-82789.html

Needless to say, we're far from the point of being able to draw conclusoins, but reading this definetly has me thinking of the possible link!
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Inclined Bed Therapy

Postby AndrewKFletcher » Mon Mar 08, 2010 12:38 am

IbRiz wrote:Inge - if your jugulars are showing stenosis when you are lying flat - you may just benefit from sleeping inclined - if you are not already. It did miracles to my MS (I have a collapsed left internal jugular, according to dr Simka).

christian


Thanks Christian

Prof8

Inclined Therapy causes chronic venous insufficiency / varicose veins to retun to normal looking veins.
Given sufficient time this has a lasting effect because the veins get used once again to being the correct size veins because the elasticity returns / learns to apply the correct tension. This is only possible if the pressure inside the veins has returned to pre varicose vein pressure!

The venous system is interconnected, so altering the pressure inside the veins for the legs MUST also apply to CCSVI.

Zamboni et al argue that CCSVI veins cannot return to normal veins.

You et al have proven this to be a false statement.

Would you mind if I copied your posts on this subject to the Inclined therapy forum? (link below)

And copy it to Professor Zamboni Dr Claude Fracheschi and Franz Schelling?

Andrew
Last edited by AndrewKFletcher on Mon Mar 08, 2010 5:53 am, edited 1 time in total.
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
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Postby IbRiz » Mon Mar 08, 2010 2:06 am

No problem Andrew - I don't mind.

I will also post my details to your forum once I get time enough for it :-)

Btw - I am also corresponding with the New Pathways journalist about the IBT piece he is writing.

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Re: My strange unexplainable liberation procedure

Postby fogdweller » Fri Mar 12, 2010 11:39 am

Apuman wrote:
prof8 wrote:Would the hookworms take enough Iron out of the blood to avoid creating deposits? The MSers with anemia seemed to throw that theory off. Ever since, I've been looking for a way to reconcile the two ideas.


I have no idea about hookworm, but there is nothing at all inconsisitent about anemia and high iron deposits in the brain tissue. Iron circulating as hemoglogin in the blood may be very low (anemia) and stable iron deposits as iron molecules deposited in the brain tissue may exist in large numbers.

The reason is the same as why reducing circulating iron in the blood will not reduce the stable iron deposits in the brain. You need somehow to chelate the brain iron molecules.
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Postby respawn22 » Sat Mar 13, 2010 3:35 am

Let me add some of my ramblings on the subject, strangely enough I have a very unique familial history with MS.

My mother and aunt both suffer/suffered with this terrible disease. My aunt passed away a few years back and my mother still suffers. She's had this disease since 1985 and now lives in a nursing home and is confined to a bed/wheelchair each day.

I have exhibited symptoms but nothing that can be seen on MRI or a spinal tap - my sister has lesions on her brain but has very little other symptoms, shaky hands, tired, and maybe forgetful at times.

My mother required surgery recently to remove one of her kidneys due to a calcification problem and they imaged her abdomen twice and by chance found her inferior vena cava completely flattened.

While talking with her doctor she mentioned that the only time they see things like that is when the patient is "dehydrated" but she was scratching her head because my mother was/is getting plenty of fluids and couldnt figure out why it was flattened.

While I dont feel that MS is actually one single disease but many different one's that exhibit the same end result, I'm going out on a limb here and saying that I feel nitric oxide is probably playing a roll in what is being seen in some MS patients.

There's been quite a bit of talk about chronic expression of nitric oxide in certain individuals, and it's role in human disease. Nitric oxide is a vasodilator and it's also used by the immune system to kill bacteria but some bacteria have developed a way to evade NO and I have to wonder what role this may play in chronic NO expression within the body and it's effects on the veins.

I think of it like this - a garden hose that is semi-ridgid has less of a chance to kink and water flows thru it better, while a softer hose has a tendancy to kink in many areas. I'm curious if this holds true with veins as well. While I know the idea of a vasodilator is to allow more blood flow thru the vein does chronic NO expression make veins much more likely to kink and not retain their shape like they should?

Just something to think about...
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Postby Apuman » Mon Mar 15, 2010 1:23 pm

I just came across this article, some may find it interesting:

http://autoimmunedisease.suite101.com/a ... tis_update

In short, it's on vasculitis, or a swelling of the blood vessles. The parts I found to be most interesting were the sections where it talked about it's connection to autoimmune disorders and it's connection to viral infections. They don't list EB specifically, but I wonder if there's been much research into a possible connection.

I agree with respawn22's point that MS is likely not one single disease, and can't be said to always be caused by the same factors. I think the same ought to be said about CCVIS, though it would make sense that venious inflamation could be one of them.
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Postby LR1234 » Mon Mar 15, 2010 2:01 pm

Interesting thoughts respawn. I am sorry to hear both your mother and aunt have/had MS.

You could have a point about the NO being involved with the vein issues seen.

That is interesting that your mum had issues with her vena cava.
Now I suppose the question is: was she born with it or did it develop???

Has she had it treated via angioplasty?

It might be worth mentioning this on the Dr Sclanfani anwsers questions thread. Maybe he can make some comments.

Apuman I think Viral infections and the Link to CCSVI is being studied as well as chlamidya P and mycoplasma infections. Maybe for each different MS sufferer the cause is different but we all end up with the same Nervous system damage.
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