Re:

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

Postby LR1234 » Wed Jul 21, 2010 1:03 am

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Last edited by LR1234 on Mon Mar 05, 2012 11:50 pm, edited 2 times in total.
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Postby costumenastional » Wed Jul 21, 2010 1:29 am

LR1234 wrote: In Bulgaria they were very aggressive with the treatment, it was agony and they ballooned all the main veins (jugulars and azygous)


I must consent with that. It was a painful experience and this goes for all patients who i was with during the week i was treated in Sofia. At the time, i took it as a good sign. Still do actually... for me where there is pain, there are problems to be fixed. I still feel pain where Petrov ballooned me 3 months ago. Fortunately, my veins are still open.
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thanks

Postby LivabirdsHubbie » Wed Jul 21, 2010 2:11 am

Hi LR,
Thanks for all the updates, going to be taking my wife Livabird in October for a second treatment as well, first was Poland.
Although there are risks with any procedure, we will try anything as she has gotten worse and worse, maybe it needs to be a more aggresive approach, who knows...
I have had contact with a Neurologist in Nottingham who would like to meet with me and my wife to talk about CCSVI and what he can possibly do.
He has said he is not yet convinced but has an Open mind and is very interested in researching this further.
Maybe a step in the right direction at turning around the Neuro community...

All the best in your recovery
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Postby silverbirch » Wed Jul 21, 2010 3:07 am

LR1234

How pleased I am to see your postings, I was going boss eyed looking for your updates.

May I ask did you just go to the said hosp as an emergency with your findings from Bulgaria ?

Praying for those thinners to do their stuff.
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Postby L » Wed Jul 21, 2010 5:26 am

Good luck for the three weeks check up!
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Postby whyRwehere » Thu Jul 22, 2010 12:54 pm

LR1234, I am sorry you went through this...I only just saw this, as I was away from the site and away from home, so no internet anyhow. I am glad you are better and didn't have to wait with baited breath to hear the outcome. Hope you improve more and more.
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Postby Lyon » Sun Jul 25, 2010 8:45 am

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Postby CCSVIhusband » Sun Jul 25, 2010 9:19 am

and of course the guy in the peanut gallery ONLY who comments when people have negative stories, but never congratulated my wife's success story (or anyone else who has had a success after CCSVI) ...



:roll:
:roll:
:roll:
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Postby silverbirch » Sun Jul 25, 2010 11:24 am

LR the signs are good and maybe a combo of your vein on the mend and the blood thinners pushing threw those barriers.

glad your feeling better sad that you have had a bumpy ride xxx

A big thankyou to you finding the strength to report back here that was a hard thing to do.

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Postby Lyon » Sun Jul 25, 2010 11:47 am

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Postby whyRwehere » Sun Jul 25, 2010 12:54 pm

LR1234,
Glad to hear you are having round the clock attention. While the blood thinners may make you tired, they may very well be helping...perhaps you have a bit of that Hughe's syndrome? Anyhow, although Bob is annoying, I am sure he means it when he says he hopes you feel better. We all hope that, of course!!
Why
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Postby cheerleader » Sun Jul 25, 2010 1:09 pm

Hi LR--
Just really glad to hear you are feeling a bit better, and that the clots have been removed. Very scary. Marie had a bad clot from banging her leg after her procedure. She had similar issues as you with hypercoagulation. Clotting is a definite risk, and I'm glad the docs are testing your INR regularly...even though that's (literally) a pain. Hang in there, and thanks for coming on and telling the whole story. Just really sorry for you,
cheer
Last edited by cheerleader on Wed Jul 28, 2010 3:50 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Sun Jul 25, 2010 2:28 pm

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Postby happy_canuck » Sun Jul 25, 2010 2:56 pm

Hi LR,

I am so happy you are doing a bit better. It's too bad you had to deal with the second procedure, but to have these two major complications afterward must have been extraordinarily difficult. You are clearly getting the help you need now and I think it will help a great number of people through your doctor's case study of your situation.

All the best for your continued recovery,

~Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby LongTimeLurker » Tue Jul 27, 2010 3:21 am

I think my name says it all, but I don't know how to post a "link" thing.

So just check out Lyon's (Bob Lyon's) comments in the Regimens Forum

under --- Helminthic therapy(treatment using hookworms)

Interesting he mentions how "hopeful" he is for people having HOOKWORMS put in themselves, with this lovely quote:

LYON 5/7/2010 (date is important because he's been trashing CCSVI since well before that, so this isn't some toned down Lyon)
Personally I think your results are very hopeful so far.

In my mind I'd like to but am not going to credit the worms to bringing down what would have been a full blown relapse but I've always been convinced that it's a hell of a lot easier to control a fire by keeping it from starting than trying to tame it at full fury.

The point, if I really have one, is that I'm elated that the relapse is gone because that seems to raise the odds that the future is going to show positive results.



But he never says how HOPEFUL he is when anyone in the CCSVI forum gains anything back after liberation.

MAYBE he should just hang out in the Regimens forum permanently - since he's so HOPEFUL for all of that nonsense.

Sounds a lot like Aimspro or bee-sting therapy (or some other really JUNK science) to me!!!

MORESO THAN A KNOWN AND RECOGNIZED VASCULAR CONDITION LIKE CCSVI. That's for sure ...
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