Thanks Colapesce
CCSVI in Bulgaria
Hello all,
As a person with MS who has been going through a lot of suffering I stand behind the information about Bulgaria that I gave you earlier. It is nice that other people's friends are trying to translate too but it worries me that the info is different from what I have read, for instance the person with thrombosis is not just one. I will be reading the new info on their forum and when there is something important I will inform you right away. As far as the stent is concerned, Ivan (nick) on the Bulgarian forum wrote it is made of an alloy of nickel and titanium. I have also thought their stents may be different from what they use in Poland.
I am very thankful to the person who said here they haven't read about similar complications (thrombosis, clogging, heavy period) in patients who've been to Poland. Has anyone read anything like that about patients who've been to Poland or Standford etc.?
And did you get a response from the docs in Bulgaria about your concerns?
I wish everyone the best of luck and I know it's all kind of experimental but I wanted to share what I know so everyone can be as informed as possible!
As a person with MS who has been going through a lot of suffering I stand behind the information about Bulgaria that I gave you earlier. It is nice that other people's friends are trying to translate too but it worries me that the info is different from what I have read, for instance the person with thrombosis is not just one. I will be reading the new info on their forum and when there is something important I will inform you right away. As far as the stent is concerned, Ivan (nick) on the Bulgarian forum wrote it is made of an alloy of nickel and titanium. I have also thought their stents may be different from what they use in Poland.
I am very thankful to the person who said here they haven't read about similar complications (thrombosis, clogging, heavy period) in patients who've been to Poland. Has anyone read anything like that about patients who've been to Poland or Standford etc.?
And did you get a response from the docs in Bulgaria about your concerns?
I wish everyone the best of luck and I know it's all kind of experimental but I wanted to share what I know so everyone can be as informed as possible!
NewHope, I did write to Dr. G. asking him about such complications. Here is his answer:
"Yes, there was a case of stent thrombosis that was successfully removed. No danger of manipulation. But rarely, may have minor complications."
But if you say there is more than one person with thrombosis, this does worry me, and I am hesitating to go there, to be honest.
Also, if the stents used in Bulgaria are made of an alloy of nickel and titanium, then what are the stents used in Poland made of? Does anyone know the answer? Please let us know.
It sounds like Dr Simca in Poland is successful so far and with no major complications, so I am definitely wondering which protocol the Bulgarian team is using, and whether they took some training with Simca or Zamboni.. all this is making me think seriously about making a decision and would not like to make a hasty or unwise decision.
"Yes, there was a case of stent thrombosis that was successfully removed. No danger of manipulation. But rarely, may have minor complications."
But if you say there is more than one person with thrombosis, this does worry me, and I am hesitating to go there, to be honest.
Also, if the stents used in Bulgaria are made of an alloy of nickel and titanium, then what are the stents used in Poland made of? Does anyone know the answer? Please let us know.
It sounds like Dr Simca in Poland is successful so far and with no major complications, so I am definitely wondering which protocol the Bulgarian team is using, and whether they took some training with Simca or Zamboni.. all this is making me think seriously about making a decision and would not like to make a hasty or unwise decision.
NewHope, also I have a suggestion; you mentioned one of the Bulgarian patients on the Bulgarian forum speaks English. Do you mind asking him to come to this forum, right to this thread, his direct accound will be valuable to all of us.
Thank you again for taking the time and making sure we are aware of all what you know.
Thank you again for taking the time and making sure we are aware of all what you know.
Niceflow,Niceflow wrote: Also, if the stents used in Bulgaria are made of an alloy of nickel and titanium, then what are the stents used in Poland made of? Does anyone know the answer? Please let us know.
Stents that are used in Poland, bu Simka team are produced by Cordis a Johnson&Johnson company.
My stent certificate is as follows:
"Cordis S.M.A.R.T. Control NITINOL STENT C12040MV, 12 mm x 40 mm, 7F, LOT 15122130"
I dont understand all those numbers but I guess 12 mm x 40 mm is the size.
The stents are made of Nitinol wich is an alloy of Nickel (49%) and Titanium (51%). The name comes from Ni (for Nickel), Ti (for Titanium), NOL (for Naval Ordnance Laboratory), which developed Nitinol
Hope this information is helpful
Last edited by mila77 on Thu Apr 29, 2010 11:08 am, edited 1 time in total.
Hi everyone,
Pinksapphire is in Bulgaria right now. Here what she wrote on her Facebook page yesterday:
"OK, here's the scoop on my testing. First of all Dr. Zamboni was here in November teaching Prof Grozdinski on the protocol for diagnosing CCSVI. I didn't know that. So that's a huge bonus and to make it even better.....I am over 90% BLOCKED not in one jugular but BOTH!!!!! "
You can go at her Facebook page at:
http://www.facebook.com/home.php?#!/pro ... =530716100
Hope she won't be mad at me because I gave you her FB page. Please, be discreet!
Thanks,
Pinksapphire is in Bulgaria right now. Here what she wrote on her Facebook page yesterday:
"OK, here's the scoop on my testing. First of all Dr. Zamboni was here in November teaching Prof Grozdinski on the protocol for diagnosing CCSVI. I didn't know that. So that's a huge bonus and to make it even better.....I am over 90% BLOCKED not in one jugular but BOTH!!!!! "
You can go at her Facebook page at:
http://www.facebook.com/home.php?#!/pro ... =530716100
Hope she won't be mad at me because I gave you her FB page. Please, be discreet!
Thanks,
From wikipedia I found out that there is 2 types of stents. Bare Metal Stents and Cobalt-chromium-molybdenum alloys for stents.
The alloy stents contain an alloy of both titanium and nickel.
I have not copied and pasted as the info was on different pages.
Dr. S said something about metal stents could interfere with mri scans, and was not the first choise.
When the bulgarians talk about trombosis, or stent trombosis, i think we would call it occlusion, it is when the stent is clothing back up. I found on the info page from ameds in poland that the risk of occlusion with all stenting is 1-2%.
Occlusion is treated with blood thinners, or surgically if needed. From what I could make of it there was one trombosis and one partial trombosis 40% treated with blood thinners in Bulgaria.
I think its sounds a bit iffy with nickel stents, as I am slightly allergic to bet buckls, fake jewlery etc. I will have to talk to them about that.
Just done from memory this, but can provide links if anybody is interested.
The alloy stents contain an alloy of both titanium and nickel.
I have not copied and pasted as the info was on different pages.
Dr. S said something about metal stents could interfere with mri scans, and was not the first choise.
When the bulgarians talk about trombosis, or stent trombosis, i think we would call it occlusion, it is when the stent is clothing back up. I found on the info page from ameds in poland that the risk of occlusion with all stenting is 1-2%.
Occlusion is treated with blood thinners, or surgically if needed. From what I could make of it there was one trombosis and one partial trombosis 40% treated with blood thinners in Bulgaria.
I think its sounds a bit iffy with nickel stents, as I am slightly allergic to bet buckls, fake jewlery etc. I will have to talk to them about that.
Just done from memory this, but can provide links if anybody is interested.
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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pinksapphire
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Thank you for posting this. I was just about to do that. I don't mind at all that you did. The more information given to people the bettercarambole wrote:Hi everyone,
Pinksapphire is in Bulgaria right now. Here what she wrote on her Facebook page yesterday:
"OK, here's the scoop on my testing. First of all Dr. Zamboni was here in November teaching Prof Grozdinski on the protocol for diagnosing CCSVI. I didn't know that. So that's a huge bonus and to make it even better.....I am over 90% BLOCKED not in one jugular but BOTH!!!!! "
You can go at her Facebook page at:
http://www.facebook.com/home.php?#!/pro ... =530716100
Hope she won't be mad at me because I gave you her FB page. Please, be discreet!
Thanks,
Hi again,
I am a bit surprised to hear Dr Zamboni has been there in Nov. last year as I was in communication with them in Dec. and I wasn't told that Dr Zamboni has been there. They said this was something experimental and they were going to do Bulgarian patients first and start taking foreigners in April. I was surprised to hear the question "Since it's such a great discovery, how come Zamboni is not still doing it?". This question made me think they didn't know the delicate situation Zamboni's in. Also, I am translating exactly what I am reading on the forum and the following people have shared about complications (thrombosis, clogging): xaero, ivan, veihaivei, deni26, zvezdi4ka. I may be and hope to be wrong about Zamboni having been there but again just sharing.
As far as Ivan is concerned I will ask him to come to this forum but I am not sure he'll do it. What I did some time ago about a Polish forum about CCSVI (that I was following with the help of google translation and I couldn't understand a lot but I could tell when there is something good or bad) was that I contacted (via personal message after creating an id there) one of the people there who seemed to be able to speak English. I got extremely little inf this way.
I am a bit surprised to hear Dr Zamboni has been there in Nov. last year as I was in communication with them in Dec. and I wasn't told that Dr Zamboni has been there. They said this was something experimental and they were going to do Bulgarian patients first and start taking foreigners in April. I was surprised to hear the question "Since it's such a great discovery, how come Zamboni is not still doing it?". This question made me think they didn't know the delicate situation Zamboni's in. Also, I am translating exactly what I am reading on the forum and the following people have shared about complications (thrombosis, clogging): xaero, ivan, veihaivei, deni26, zvezdi4ka. I may be and hope to be wrong about Zamboni having been there but again just sharing.
As far as Ivan is concerned I will ask him to come to this forum but I am not sure he'll do it. What I did some time ago about a Polish forum about CCSVI (that I was following with the help of google translation and I couldn't understand a lot but I could tell when there is something good or bad) was that I contacted (via personal message after creating an id there) one of the people there who seemed to be able to speak English. I got extremely little inf this way.
Hello pink 
Had a look at your facebook, and your blog. Figers crossed for you tomorrow, best of luck with it. Well done for getting so far!
sophie
Had a look at your facebook, and your blog. Figers crossed for you tomorrow, best of luck with it. Well done for getting so far!
sophie
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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costumenastional
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hello, i am new to this but have been reading this for some time. I am due in Sofia on the 10 of June. I spoke with prof. Grozdinki secutary today and asked her if prof. Grozdinki had ever met Dr. Zamboni. She said no. I also asked her how all the treatment was going. Her english is not great, but I made out that people were feeling alot better. But I thought see would really say any thing different. I also mentioned the Balloon dilation, she said that this was possible. They will test you first and then disguss what the best treatment will be. I will want the balloon dilation, i think it is safer and this is what Zamboni did to his wife.
Budapest live report, 30 April 2010
Hi everybody,
We are very happy with our decision to come here to Sofia!
Accomodation in the hospital is without any remarks, we get great meals three times day, everything is clean and people are very nice.
The doctors here are very qualified and professional! I do not doubt their qualification and they are willing to answer all questions. It doesn't matter what time it is, there is always someone to ask.
They use modern equipment and work very precise.
If you want a stent or not is your personal decision! You should form your own opinion. Dr. Grozdinski and Dr. Petrov will give you their advice but respect your choice. Actually I observe a lot of patients leaving the operation room without a stent. Balloon dilatation seems to be an option.
Please keep in mind that you yourselfs make the decision. CCSVI stays a new and experimental procedure but it gives us a lot of hope. If you decide to have the procedure done, I see no reason not to go to Bulgaria.
Good luck to all of you!
PS: I was surprised to see that people in this forum post facebook-sites and thereby real names of other postes and hereby ask you all kindly not to do so in my case. I want to inform you since I think it is important for you to make your decisions but I also want to keep patient's privacy therefor I will be even more careful in the future with posting personal reports.
We are very happy with our decision to come here to Sofia!
Accomodation in the hospital is without any remarks, we get great meals three times day, everything is clean and people are very nice.
The doctors here are very qualified and professional! I do not doubt their qualification and they are willing to answer all questions. It doesn't matter what time it is, there is always someone to ask.
They use modern equipment and work very precise.
If you want a stent or not is your personal decision! You should form your own opinion. Dr. Grozdinski and Dr. Petrov will give you their advice but respect your choice. Actually I observe a lot of patients leaving the operation room without a stent. Balloon dilatation seems to be an option.
Please keep in mind that you yourselfs make the decision. CCSVI stays a new and experimental procedure but it gives us a lot of hope. If you decide to have the procedure done, I see no reason not to go to Bulgaria.
Good luck to all of you!
PS: I was surprised to see that people in this forum post facebook-sites and thereby real names of other postes and hereby ask you all kindly not to do so in my case. I want to inform you since I think it is important for you to make your decisions but I also want to keep patient's privacy therefor I will be even more careful in the future with posting personal reports.