Till then....
CCSVI in Bulgaria
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pinksapphire
- Family Member
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sisterofms
- Newbie
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- Joined: Tue Apr 06, 2010 2:00 pm
Best of luck, pink! Sofia sounds a fascinating place, and you are on a wondrous adventure. Sorry about the brutal flight. It is numbing even without CCSVI.pinksapphire wrote:Thank-you for all the well-wishes!!!! This means more than you know!! Took the red-eye from Halifax to London and am totally bagged...and in pain of course. Off to bulgaria tomorrow , testing Wednesday, procedure Thurs, hopefully something posted here Thurs night, if not then Friday...
Till then.... :wink:
My name is not really Johnson. MSed up since 1993
Hello,
Have you tried going on a Bulgarian MS forum? As far as I know they have had between 20 and 30 patients and at least 3 on the forum complained they got thrombosis. (I am wondering how common this is in Dr Dake's patients who got stents?) One guy wrote there he had a great improvement but the other thing I noticed is that it seems like they use a lot of stenting which is a bit disturbing to me. On the other hand I know the medical team there is very good and we are all pioneers. I just wanted to share this with you. Here is the link:
http://www.msobshtestvo.org/forums/viewtopic.php?t=1154
I wish you all best of luck!
Have you tried going on a Bulgarian MS forum? As far as I know they have had between 20 and 30 patients and at least 3 on the forum complained they got thrombosis. (I am wondering how common this is in Dr Dake's patients who got stents?) One guy wrote there he had a great improvement but the other thing I noticed is that it seems like they use a lot of stenting which is a bit disturbing to me. On the other hand I know the medical team there is very good and we are all pioneers. I just wanted to share this with you. Here is the link:
http://www.msobshtestvo.org/forums/viewtopic.php?t=1154
I wish you all best of luck!
Thanks NewHope for the information, although what you say is not so reassuring ! I clicked on the link but I cannot understand the language, it is not in English. Is there an English forum for Bulgarian patients treated there?
You mention that they use a lot of stenting, and 3 people had complications with thrombosis. How did you get this information. Do you understand Bulgarian language?
Please let us know.
You mention that they use a lot of stenting, and 3 people had complications with thrombosis. How did you get this information. Do you understand Bulgarian language?
Please let us know.
Hi NewHope
I'm going in June, and this info makes me a little worried.
I'm lucky I don't have headaches and suffer no pain anywhere and I really don't want to start, I have enough to deal with!
I went on the Bulgarian forum, translated it,but it doesn't make much sense. I want to ask my Bulgarian friend to translate, but weeks ago she told me that Dr. Grozdinski came highly recomended and had a good success rate. I now believe that she's either mistaken about the info or people are getting lost in the translation.
I'm going in June, and this info makes me a little worried.
I'm lucky I don't have headaches and suffer no pain anywhere and I really don't want to start, I have enough to deal with!
I went on the Bulgarian forum, translated it,but it doesn't make much sense. I want to ask my Bulgarian friend to translate, but weeks ago she told me that Dr. Grozdinski came highly recomended and had a good success rate. I now believe that she's either mistaken about the info or people are getting lost in the translation.
My appointment is next week.
Hello new hope and everybody.
I clicked on the link, and spent morning translating it all. It is not an easy read, after its been through google translator, but from what I can make of it, they are having very similar discussions as on this forum. Most were very happy with results, and some not as happy with the results. Somebody was telling the one warning about it, not to scare people off, as he himself was extreamly happy with his results.
The one most sceptical, had felt alot of pain during and after procedure, the one telling him to stop moaning, didnt have any pains.
There were also patients reporting of having procedure done without stents.
But as I said that was what I could make of it all, and there could be loads of info lost in translation. If you speak Bulgarian, or know somebody that does, it would be great if you could fill us in a bit more, please
I'm having procedure done in just a couple of weeks now. I have been a bit concerned about after care and follow up apointments, and also to check for restenosis. I do not think my local hospital would be very helpful. Reading the bulgarian page, I found out the offer free scans to check if everything is going all right, on different intervals after procedure, free of charge. As we live in europet hat is a great comfort to me, as it is not to far to travel for my scans.
It seems to me that Tokuda hospital is a mix of private, public, and university hospital, and I find that very comforting, thinking it will give us the best from all three worlds. It seems like all of the doctors involved in the treatment have a phd, and some of them professors, thats telling me that it is the countrys most recognised experts, and that we should be in safe hands.
I have heard reports on tims as well of pain when stents are put in place, and same with ballooning. There has also been reprots about nerve damage, and other traumas that needs healing.
Please tell us a bit more about the info you have about the problems they have had in Bulgaria, as it is a real worry if they are not up for the job. Maybe I should try to track down a Bulgarian to help me with translating it all. Maybe I should even try to sign on to the web page and ask them to give us the highlights of their debate in English.
I clicked on the link, and spent morning translating it all. It is not an easy read, after its been through google translator, but from what I can make of it, they are having very similar discussions as on this forum. Most were very happy with results, and some not as happy with the results. Somebody was telling the one warning about it, not to scare people off, as he himself was extreamly happy with his results.
The one most sceptical, had felt alot of pain during and after procedure, the one telling him to stop moaning, didnt have any pains.
There were also patients reporting of having procedure done without stents.
But as I said that was what I could make of it all, and there could be loads of info lost in translation. If you speak Bulgarian, or know somebody that does, it would be great if you could fill us in a bit more, please
I'm having procedure done in just a couple of weeks now. I have been a bit concerned about after care and follow up apointments, and also to check for restenosis. I do not think my local hospital would be very helpful. Reading the bulgarian page, I found out the offer free scans to check if everything is going all right, on different intervals after procedure, free of charge. As we live in europet hat is a great comfort to me, as it is not to far to travel for my scans.
It seems to me that Tokuda hospital is a mix of private, public, and university hospital, and I find that very comforting, thinking it will give us the best from all three worlds. It seems like all of the doctors involved in the treatment have a phd, and some of them professors, thats telling me that it is the countrys most recognised experts, and that we should be in safe hands.
I have heard reports on tims as well of pain when stents are put in place, and same with ballooning. There has also been reprots about nerve damage, and other traumas that needs healing.
Please tell us a bit more about the info you have about the problems they have had in Bulgaria, as it is a real worry if they are not up for the job. Maybe I should try to track down a Bulgarian to help me with translating it all. Maybe I should even try to sign on to the web page and ask them to give us the highlights of their debate in English.
<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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Greenfields
- Family Member
- Posts: 52
- Joined: Sun Nov 29, 2009 3:00 pm
Message for pinksaphire
Hey, Chicken
Just to say that I will be thinking of you all of tomorrow. I hope sincerely you get the result you want and deserve.
Heartfelt warmth and wishes.
Go get 'em
Robob x
Just to say that I will be thinking of you all of tomorrow. I hope sincerely you get the result you want and deserve.
Heartfelt warmth and wishes.
Go get 'em
Robob x
Hi all,
Yes I speak Bulgarian and reread the forum for you carefully and took notes. First of all the doctors are really very good and the best ones in Bulgaria. Someone on the forum said about them “kind, considerate, caring, great team, excellent professionals”, another person said about the surgeon Dr Petrov - “phenomenal, calm, precise, and confident.” Someone mentioned the anticoagulants the doctors are using: “Plavix, Antistenokardin, Detralex, and Aspirin.” Consider the fact that this forum is very small and only a few people are reporting (maybe around 10). One guy (nick – xaero) felt great after ballooning and was doing great for about two weeks then he was retested and there was restenosis so he got a stent in each jugular. Maybe about 2 weeks later they saw a thromb (thrombosis) in the vein that was actually better (was much less narrowed than the other one). He has been on anticoagulants the whole time as everyone who had stent on the forum there. Another man (Ivan) is the one with the best results so far (I think he speaks English) – his disability index went down by 1-1.5. However he says that the doctors say “they will believe if they see improvement or lack of worsening at least six months after the procedure”. About a month after his procedure or a little later, the doctors found “partial clogging of his stent”. He says “he’d repeat the procedure if he can turn back time”. He has also been on anticoagulants the whole time. Also, a lady (nick - *) also got a stent and said her period had more blood than before and the docs told her to stop the aspirin and continue with the other anticoagulant. A little later, the docs found out her stent is “partially clogged”. The second lady (nick – deni26) is a more disturbing case. She had a stent and a month later they saw a thromb/thrombosis where the stent is. However, after they put the stent she had her period and it was very strong and her hemoglobin got low due to that and they even had to use injections to stop it and gave her iron pills. Due to all that they had to take her off the anticoagulants during the period. Then she got the thromb I mentioned. After the 1st period they restarted the anticoagulants, then same thing happened with the 2nd period and they stopped the meds again during the period after which they saw “the vein was clogged.”. And there was a third lady who had a disability index of only 1.5 and no symptoms almost and they put a stent in her vein too. Maybe a month later or so they found out her “the diameter of the vein right after the stent has reduced and there was reduced flow” so they are considering putting a 2nd stent on that vein in a couple of months. As far as I know putting two stents one after the other can be very dangerous and can cause migration of one of the stents that may come loose due to the effect on the vein of the other stent (as far as I know something like that happened in Stanford). Also, on April 20, Ivan wrote that there are 40 people who underwent the procedure. Finally, the medical team there is really good but have they received any training from Dr Simka or someone from his team or Dr Zamboni? (I am just wondering as I know Dr Simka travels a lot to provide training, Dr Zamboni came to Buffalo and also someone from the Buffalo team went to Italy and got training there.) Also, which protocol are they following exactly, I am not sure. I hope I helped some….
May God help us all!
NewHope
Yes I speak Bulgarian and reread the forum for you carefully and took notes. First of all the doctors are really very good and the best ones in Bulgaria. Someone on the forum said about them “kind, considerate, caring, great team, excellent professionals”, another person said about the surgeon Dr Petrov - “phenomenal, calm, precise, and confident.” Someone mentioned the anticoagulants the doctors are using: “Plavix, Antistenokardin, Detralex, and Aspirin.” Consider the fact that this forum is very small and only a few people are reporting (maybe around 10). One guy (nick – xaero) felt great after ballooning and was doing great for about two weeks then he was retested and there was restenosis so he got a stent in each jugular. Maybe about 2 weeks later they saw a thromb (thrombosis) in the vein that was actually better (was much less narrowed than the other one). He has been on anticoagulants the whole time as everyone who had stent on the forum there. Another man (Ivan) is the one with the best results so far (I think he speaks English) – his disability index went down by 1-1.5. However he says that the doctors say “they will believe if they see improvement or lack of worsening at least six months after the procedure”. About a month after his procedure or a little later, the doctors found “partial clogging of his stent”. He says “he’d repeat the procedure if he can turn back time”. He has also been on anticoagulants the whole time. Also, a lady (nick - *) also got a stent and said her period had more blood than before and the docs told her to stop the aspirin and continue with the other anticoagulant. A little later, the docs found out her stent is “partially clogged”. The second lady (nick – deni26) is a more disturbing case. She had a stent and a month later they saw a thromb/thrombosis where the stent is. However, after they put the stent she had her period and it was very strong and her hemoglobin got low due to that and they even had to use injections to stop it and gave her iron pills. Due to all that they had to take her off the anticoagulants during the period. Then she got the thromb I mentioned. After the 1st period they restarted the anticoagulants, then same thing happened with the 2nd period and they stopped the meds again during the period after which they saw “the vein was clogged.”. And there was a third lady who had a disability index of only 1.5 and no symptoms almost and they put a stent in her vein too. Maybe a month later or so they found out her “the diameter of the vein right after the stent has reduced and there was reduced flow” so they are considering putting a 2nd stent on that vein in a couple of months. As far as I know putting two stents one after the other can be very dangerous and can cause migration of one of the stents that may come loose due to the effect on the vein of the other stent (as far as I know something like that happened in Stanford). Also, on April 20, Ivan wrote that there are 40 people who underwent the procedure. Finally, the medical team there is really good but have they received any training from Dr Simka or someone from his team or Dr Zamboni? (I am just wondering as I know Dr Simka travels a lot to provide training, Dr Zamboni came to Buffalo and also someone from the Buffalo team went to Italy and got training there.) Also, which protocol are they following exactly, I am not sure. I hope I helped some….
May God help us all!
NewHope
Thanks NewHope for taking the time to translate to us. Actually, I asked today a Bulgarian friend to click on the link you provided and to make a summary to me. Here is what she wrote:
"I understood your request and I read all the comments from in the forum. There are only 8 patients Bulgarians who are only fresh from their surgery ranging from one week to 2-3 weeks and what was predominant in most of their sharing was that you will be inserted a stent and they felt pain for 3-5 days after the surgery. Some of them have some of their symptoms improved partially some commented that they are just the same because it is too early. They are sharing what sort of immunosuppressant drugs they need to take at start in combination with blood thinners. One fellow suggests not to take painkillers after surgery because you will feel very groggy. They say the pain can be bad in the neck area and makes your head kind of hard to move, but it is not unbearable. The overall mood is uncertain but somewhat optimistic. They are all pioneering in this new technique and they know that so they have accepted the fact that uncertainty if part of the deal. But they claim that they were reassured that their health status will improve. "
So, I wrote tonight to Dr Grozdinski, and told him about the comments on this Bulgarian forum, and asked him about the level of risk after the operation. I encourage everyone to write to him and ask for some assurance. I feel the questions of NewHope are very intellignet, whether the Bulgarian got some training from Dr Zamboni or from Dr Simca !! How do you feel about it ?
"I understood your request and I read all the comments from in the forum. There are only 8 patients Bulgarians who are only fresh from their surgery ranging from one week to 2-3 weeks and what was predominant in most of their sharing was that you will be inserted a stent and they felt pain for 3-5 days after the surgery. Some of them have some of their symptoms improved partially some commented that they are just the same because it is too early. They are sharing what sort of immunosuppressant drugs they need to take at start in combination with blood thinners. One fellow suggests not to take painkillers after surgery because you will feel very groggy. They say the pain can be bad in the neck area and makes your head kind of hard to move, but it is not unbearable. The overall mood is uncertain but somewhat optimistic. They are all pioneering in this new technique and they know that so they have accepted the fact that uncertainty if part of the deal. But they claim that they were reassured that their health status will improve. "
So, I wrote tonight to Dr Grozdinski, and told him about the comments on this Bulgarian forum, and asked him about the level of risk after the operation. I encourage everyone to write to him and ask for some assurance. I feel the questions of NewHope are very intellignet, whether the Bulgarian got some training from Dr Zamboni or from Dr Simca !! How do you feel about it ?