IN THE UK IT WOULD BE A PRIVATE HEALTH INSURANCE. WE HAVE ONE BUT DON'T REALLY UNDERSTAND AS PRIVATE PLANS USUALLY WON'T COVER MS. ALSO MOST PEOPLE PAY IN CASH SO DON'T KNOW WHAT INSURANCE IS EVEN FOR. IT IS A MYSTERY.
LIVA
CCSVI in Bulgaria
Thanks Vhoenecke and livabird for your kind comments.
We too will be paying cash and should have enough to cover any eventualities. We've heard so much about new treatments, but also the horrid 'goat serum' scam that happened last year so were quite sceptical about this one. The recent news about the release next year of a new pill which is twice as effective as the current interferon products was received with great relief and in view of its relatively low cost, hopefully NICE will adopt the drug with little or no question.
Having seen the liberation treatment feature on BBC breakfast a few weeks ago, I vehemently searched and searched and searched followed by emails to everyone I could get my mitts on! I received a response from America saying that they were only interested in trials and heard nothing at all from Poland. The response from Bulgaria literally floored me and gave us hope to look to. I wish I could take this away from Sarah and give it to me instead, she is the most amazing woman I have ever known and is everything to me.
Right now, I am wishing my life away, waiting for the confirmation but I know from your posts that its a reality and that it is GOING TO HAPPEN.
I'm so pleased for us all, this breakthrough shows that our pasts do not equal our futures and that anything, anything is possible.
Sweet dreams
Robob x
We too will be paying cash and should have enough to cover any eventualities. We've heard so much about new treatments, but also the horrid 'goat serum' scam that happened last year so were quite sceptical about this one. The recent news about the release next year of a new pill which is twice as effective as the current interferon products was received with great relief and in view of its relatively low cost, hopefully NICE will adopt the drug with little or no question.
Having seen the liberation treatment feature on BBC breakfast a few weeks ago, I vehemently searched and searched and searched followed by emails to everyone I could get my mitts on! I received a response from America saying that they were only interested in trials and heard nothing at all from Poland. The response from Bulgaria literally floored me and gave us hope to look to. I wish I could take this away from Sarah and give it to me instead, she is the most amazing woman I have ever known and is everything to me.
Right now, I am wishing my life away, waiting for the confirmation but I know from your posts that its a reality and that it is GOING TO HAPPEN.
I'm so pleased for us all, this breakthrough shows that our pasts do not equal our futures and that anything, anything is possible.
Sweet dreams
Robob x
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livabird
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ANOTHER DRUG THAT THEY DON'T TELL YOU ABOUT WHICH CAN HELP IS LDN (LOW DOSE NATREXONE) IT HAS BEEN USED FOR OVER 20 YEARS FOR MS. A BRITISH PHYSICIAN WHO HAS MS ACTUALLY USES IT HIMSELF SO KNOWS IT HELPS. I JUST ASKRD MY GP WHO PRESCRIBED IT TO ME. I WISH I HAD KNOWN ABOUT IT YEARS AGO AS IT SLOWS PROGRESSION. YOU DON'T HEAR ABOUT IT MUCH AS IT IS A GENERIC DRUG DOESN'T MAKE DRUG COMPANIES ANY MONEY.
THOUGHT THIS MIGHT HELP YOU.
LIVA
THOUGHT THIS MIGHT HELP YOU.
LIVA
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pinksapphire
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Has anyone had any luck with getting insurance for either Poland or Bulgaria?? I've been researching Canadian companies but not too many deal with medical complication insurance...I already have regular medical insurance through my husband's plan but I don't think they would cover surgical procedures in foreign countries.
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livabird
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I DON'T THINK ANYONE WILL BE ABLE TO GET INSURANCE FOR A COMPLICATIONS IN A TREATMENT SO NEW AND NOT PROVEN TO THE MEDICAL COMMUNITY IN OUR COUNTRIES. IALSO MS TREATMENTS ARE NT COVERED WITH PRIVATE HEALTH PLANS GUESS THAT IS THEM TRYING TO COVER EVENTUALITIES. I SUPPOSE WE CAM PROVE WE HAVE REGULAR HEALTH UNSURANCE THEY COULD GO AFTER THEM. WE JUST HAVE TO HOPE WE ARE COMPLICATION FREE.
LIVA
LIVA
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pollywogsis
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Hey Livabird,
Can you please give me your email. If I can find someone in India to do my surgery, then maybe you can have my appointment. It is April 29.
I'm in transit, flying, for the next couple of days then I am having my diagnostics done in New Delhi for the next few.
Give me a week to get back to you.
In the meantime, keep the faith girly!
Can you please give me your email. If I can find someone in India to do my surgery, then maybe you can have my appointment. It is April 29.
I'm in transit, flying, for the next couple of days then I am having my diagnostics done in New Delhi for the next few.
Give me a week to get back to you.
In the meantime, keep the faith girly!
PWS
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pinksapphire
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livabird wrote:HOW DEPRESSING POLAND SEEMS TO BE OUT I GUESS IT WILL BEE BU;GARIA IN JUNE. I THINK DR. SIMKA MADE AN APPOINTMENT JE CAN'T FIT IN. HOPE I MAKE IT TIL JUNE. HOPEFULLY DR. G IS OK ABOUT NOT STENTING. I AM JUST SO UNSURE ABOUT IT.
OH WELL I LOVE THE JAPANESE HOSPITAL IT LOOKS FANTASTIC.
I will be sure to let you know how my trip goes in Bulagria! It will be fine Livabird : )You'll see! My husband is booking the tickets today. There's no turning back now (I had no intention of that anyway). Poland is not the only answer. There is a lady from Calgary, Canada that is going to India this month, it's in the Calgary paper. I would rather travel to Bulgaria, it's closer.
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livabird
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MY EMAIL IS RICKjAYNE@NTLWORLD.COM. WHERE IS YOUR APPOINTMENT IN APRIL POLLY. THAT IS SO SWEET OF YOU TO THINK OF ME. I WILL TRY TO BE OK.
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christophelux
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Be careful about stenting
It seems that some people here are confident that CCSVI stenting is safe and venous stenting common. I talked to a famous vascular surgeon some days ago and he confirmed that stenting veins is very uncommon and raised a lot of issues. Veins are much thinner than arteries. if stent discolates it goes directly to the heart (not the case in arteries where it goes the other away as the flow is from the heart not to the heart as for veins). Zamboni made clear that stenting was too dangerous for him to perform. Franceschi, the french CCSVI specialist I met personally, said the same. And Stanford procedures were not stopped because Dr Dake wanted to start scientific study, he has been forced to stop for medical reasons by FDA as he was stenting systematically without much care and a serious accident occurs when stent migrated to the heart.
Conclusion : I understand that if your treatment is not working, if MS has already a deep impact on you, if you have a clear CCSVI diagnostic - stenoses and not just small narrowing-, you want to have the liberation procedure. But I would - purely personal of course- really refrain from stenting for the first liberation procedure. If it restenosed maybe it could be an option but first time seems really aggressive. And the fact is that I read here that in Bulgaria they recommand stenting and I think you should reconsider this. Even in Poland , Simka tries to avoid stenting and he is considered already as very aggressive
Take care
Conclusion : I understand that if your treatment is not working, if MS has already a deep impact on you, if you have a clear CCSVI diagnostic - stenoses and not just small narrowing-, you want to have the liberation procedure. But I would - purely personal of course- really refrain from stenting for the first liberation procedure. If it restenosed maybe it could be an option but first time seems really aggressive. And the fact is that I read here that in Bulgaria they recommand stenting and I think you should reconsider this. Even in Poland , Simka tries to avoid stenting and he is considered already as very aggressive
Take care
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pollywogsis
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pinksapphire
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Livabird....her appointment is the day after mine in Bulgaria. Hey, if you get to go instead we could meet!livabird wrote:MY EMAIL IS RICKjAYNE@NTLWORLD.COM. WHERE IS YOUR APPOINTMENT IN APRIL POLLY. THAT IS SO SWEET OF YOU TO THINK OF ME. I WILL TRY TO BE OK.
I was just reading what christophelux had written. I too am still undecided about stents. Dr. Simka has done them in the past. When I met him at False Creek, Vancouver he said he would prefer to balloon than to stent. I'm sure that Dr. Grozdinski would balloon if I requested it, rather than stenting.
Decisions Decisions!!
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livabird
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THAT WOULD GREAT PINK. YOU AREVON THE SAME PAGE AS MW. I DON'T WANT I JUST WANT TO SEE WHAY IT DOES FOR ME. IF I NEED IT AGAIN THEN MAYBE STENTING AT THAT POINT WILL BE TESTED MORE. CHRISTOPHE'S [OST WAS INTERESTING BUT FRANCE SEEMS TO BE VERY ANTI CCSVI. APPARENTLY A 16 PAGE ARTICLE ON CCSVI WAS REMOVED FROM A FRENCH SITE.
HOPE WE GET TO MEET.
LIVA
HOPE WE GET TO MEET.
LIVA
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christophelux
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stenting
livabird,
it is true that for the time being France ms association (www.arsep.org) led by Neruo is strongly against CSSVI and deleted 130 pages postings on this topic on their forum.
But Dr fransceschi is not a neuro, he is a vascular specialist and a strong believer in ccsvi. He is member of the scientific committee of Zamboni fundation and wrote on CCSVI already in 2008 when nobody was interested in this.
So believe me, his opinion does mean a lot here.
it is true that for the time being France ms association (www.arsep.org) led by Neruo is strongly against CSSVI and deleted 130 pages postings on this topic on their forum.
But Dr fransceschi is not a neuro, he is a vascular specialist and a strong believer in ccsvi. He is member of the scientific committee of Zamboni fundation and wrote on CCSVI already in 2008 when nobody was interested in this.
So believe me, his opinion does mean a lot here.