CCSVI in Bulgaria

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

Postby Vhoenecke » Sat Feb 27, 2010 6:15 am

This is our only hope so far. The more of these hospitals and doctors that will allow this procedure to be performed the more of us will get it done. It is scary to be in the first group though. Take care all.

Val
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Postby Jaguar » Sat Feb 27, 2010 6:19 am

Scary to be first group - this I totally agree with.

Still - the other options are even scarier when you think about it.
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Postby livabird » Sat Feb 27, 2010 6:59 am

I AM NOT SCARED OF THEM NOT HAVING DONE IT BEFORE BECAUSE THEY HAVE DONE PLENTY IN DIFFERENT AREAS OF THE BODY. I AM JUST THE MOST SQUEAMISH PERSON EVER I COVER MY EYES FOR NEEDLES. I HOPE THEY BLINDFOLD ME AND GIVE ME EARPLUGS. I AM GOING TO HAVE NIGHTMARES FOR MONTHS. PAIN I CAN HANDLE BUT ..... LOL
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Postby Jaguar » Sat Feb 27, 2010 7:44 am

Sorry, but I do respectfully disagree that they have done plenty of stents in veins anywhere in the body. There is absolutely nothing that convinces me that have.
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Postby livabird » Sat Feb 27, 2010 8:49 am

JAGUAR I DON'T KNOW WHAT YOU MEAN BUT DR. GRODZINSKI'S EXPERTISE IS IN THE VENOUS FIELD. IF YOU HAVE NO CONFIDENCE THEN DON'T GO THERE.
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Postby Vhoenecke » Sat Feb 27, 2010 12:19 pm

I think if I may say that Jaguar is concerned about stents in the vein. They have put stents in arteries but not a lot of veins. They may not do the stents, instead the balloon. No worries, there will be stent manufacturers scrambling to make millions off this. The stents will be perfected. This is our only hope no thanks to our countries. Take care all! Let's not think little of others' concerns. We need to support each other. NO ONE ELSE IS!
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Postby livabird » Sat Feb 27, 2010 12:33 pm

I AM GOING TO SEE IF I CAN JUST HAVEB THE BALOON FIK=LUTION IF I NRRD IT DONE AGAIN IN A FEW YEARS I WIL DO THIS. SORRY MY COMMENT CAME OUT OF FRUSTRATION. WE NEED MORE COUNTRIES LIKE BULGARIA AND POLAND JOINING IN OUR FIGHT FOR CCSVI.
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Postby Vhoenecke » Sat Feb 27, 2010 4:07 pm

No need to appologize livabird, you are among friends.
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CCSVI in Bulgaria

Postby pollywogsis » Sat Feb 27, 2010 4:58 pm

Hi everyone,

I'm new at this forum stuff so please forgive any unintentional mistakes.

I am also scheduled for surgery in April.
I have been in contact with Prof. Grozdinski. A very pressing concern for all of is whether to stent or not to stent. Prof. Grozdinski has relayed to me that he recommends stenting. He also gave me his price of 1000euros for re-ballooning for those who choose not to stent. Zamboni claims that 47% of the 65 patients needed to re-balloon 8-9 months post op according to So, I guess the real question is whether someone is financially able to return to Bulgaria to get re-ballooned. The 1000euros is for the surgery only, not including hotel, flight etc.

Jaguar is correct regarding surgery's in India. Below I have posted the info that I have on this. The price I was given for surgery in India is $25,000 CAD this price is from Canada inc. return. The price once you are at the hospital for the surgery is $10,000 CAD.

The reason why I chose Bulgaria is for a couple of reasons:
Once I did the conversion of currency, The surgery is cheap;er in Bulgaria.

I am very impressed with the package Prof Grozdinski is offering including his diagnostics including testing of the entire venous system not just the jugulars.
He gives us the choice of stents or not. Even though he does recommend stents.
He has performed 40+ surgeries to date, all with stents and only minor complications.

India does not have their testing facilities in place as of Feb. 27, 2010.
Here are the surgeon bios for the two Indian surgeons who will start operating in March. One in Banglore and the other in Chennai, India.

2 attachments — Download all attachments

Dr.V.Balaji.doc
30K View as HTML Open as a Google document Download


Dr.R.Sayeed.doc
30K View as HTML Open as a Google document Download
PWS
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Postby pinksapphire » Sun Feb 28, 2010 8:15 am

Jaguar wrote:Sorry, but I do respectfully disagree that they have done plenty of stents in veins anywhere in the body. There is absolutely nothing that convinces me that have.



I am from a very small city and my vascular surgeon here has done plenty of stents in veins in other areas in the body. Vascular surgeons everywhere undoubtedly performed many procedures stenting veins, just not in the neck area. He told me that there were more dangers in stenting arteries because there is a chance of plaque being dislodged and going to the brain or heart. Veins on the other hand do not have plaque therefore no worries. If the vein should tear it is easier for it clot than an artery would be.
So he put my and my families mind at ease. It's a simple procedure that I'm sure an experienced doctor like Grozdinski and his team has done many many many times and has done successfully!! I have no worries about going to Bulgaria in April!!!!
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Postby youbetcha » Sun Feb 28, 2010 9:00 am

Poly & Pink - Thank you for sharing info you both have and also for the reassurances in having the treatment done in Bulgaria. Reading posts such as yours puts most of my worries at ease.

God Bless!
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Postby livabird » Sun Feb 28, 2010 12:03 pm

Thank you so much for posting that pinksaphire i am now on the fence. I had decided, with my husband, ok i will have ballooning sans stents because there just isn't enough out there done yet to give us enough data. The whole procedure is so new. It would be so much better if it had first been done a few years back and we could hear from patients. But sadly we are in a position they we have to be guinea pigs. From what you have said i will start searching this avenue for data. I really understand now jaguar what you meant. I actually may consider stenting now thanks to you pink. In the interim my ldn seems to be kicking in so at least the time waiting for my treatment in june or july won't be too bad.
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Postby livabird » Sun Feb 28, 2010 12:06 pm

Sorry i forgot to say did they say what could happen if a stent was dislodged.
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Postby pinksapphire » Sun Feb 28, 2010 5:15 pm

HI.....

There have been countless stenting procedures that I have read about, only one became dislodged and open heart surgery had to be performed because the stent entered the heart. This person is recovering and I believe that he has remaining stents in him that are fine. There is risk with every procedure/surgery. I have had 7 different surgeries in my life and suffered no bad outcomes. They were all a lot more invasive than balloon angioplasty. It is still a very scary thought of the stent dis-lodging, but I am willing to take the chance if it means a better quality of living not just existing. :)
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Postby livabird » Mon Mar 01, 2010 3:37 am

THANK YOU SO MUCH FOR INFO PINK. IT IS VERY TRUE THAT THIS IS FINALLY GIVING US HOPE AND EVERY PROCEDURE HAS RISKS. BUT I GUESS WEIGHING THE PROS AND CONS REALLY HAVING THE CHANCE OF LIVING A LIFE AND NOT MERELY EXISTING IS BY FAR A BIGGER PRO THAN A SLIGHT CON.
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