Re:
- costumenastional
- Family Elder
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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.LR1234 wrote: In Bulgaria they were very aggressive with the treatment, it was agony and they ballooned all the main veins (jugulars and azygous)
- LivabirdsHubbie
- Family Member
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- Location: Northampton UK
thanks
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
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
- silverbirch
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- whyRwehere
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- CCSVIhusband
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- silverbirch
- Family Elder
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- whyRwehere
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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
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
- cheerleader
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- Location: southern California
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
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
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
- happy_canuck
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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
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://tiny ... 44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tiny ... 3wzmkmg</a> ~Facebook</strong><br />
- LongTimeLurker
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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)
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 ...
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 ...