CCSVI in Bulgaria

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

Postby livabird » Tue Sep 14, 2010 8:50 am

Well it is only three weeks now and boy i am squeaming out oh well. Does anyone know if they enter through the left and do ikkiac vein i prob have May Thurmer syndrome among other things.

Liva
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Postby dania » Tue Sep 14, 2010 9:03 am

livabird wrote:Well it is only three weeks now and boy i am squeaming out oh well. Does anyone know if they enter through the left and do ikkiac vein i prob have May Thurmer syndrome among other things.

Liva

They enter from the right. I asked about May-Thurner and the doctor was unaware of this.
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Postby isadora » Sun Sep 19, 2010 4:29 pm

Hello
One year ago, my son age 25, he had just being diagnosed with sm, but since the disease appeared to be three years ahead. It is program for the procedure and surgery Oct. 20. He received the mail with the price 5000 euro and Doppler venographie balloon angioplasty, 650 euros for the stent. The cost includes 3-4 days of hospitalization, three meals a day, all for the pacient. I go with my son in Sofia and want to know if I could stay with him al hospital. There is room hotel and a restaurant al hospital, because I want to be just an hour of my son if possible? How much would cost the accommodation and meals for me? I speak french. The doctors and nurses speak french too? Please share me your experience in Sofia. Thank you very much, good luck to all.[/b]
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Postby Kathyj08 » Wed Sep 22, 2010 8:39 am

I had my procedure done in Bulgaria the beginning of July. All 3 veins were ballooned. My symptoms have been many but mild so I didn't notice big improvements. I definately noticed that my balance was getting better but not for very long.
I had a feelling things were reversing so I went to Dr. Mehta in New York and had a doppler ultrasound done and I haven't received the report but was told that it does look as though I have re-stenosed.
Not sure what I am doing next.
I am still glad that I went to Bulgaria and I think they do a good job. I am not sure the name of the Dr. that did my procedure but it wasn't Dr. Petrov. I feel they do a good job, but I guess there is alot more to discover with this.
Kathy
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Postby dania » Wed Sep 22, 2010 8:53 am

Kathy, I had it done in June (In Bulgaria) restenosed returned 3 weeks later had it done again. I know I have restenosed. I am going to try for a third time in Albany. I wonder if the long flight has anything to do with restenosing. I am going by car to Albany. It is only a 5 hour drive from where I live.
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Postby Kathyj08 » Wed Sep 22, 2010 2:54 pm

Dania,
I've been wondering how you are doing.
I've also wondered about the long flight and decided that I will most likely drive for the 2nd time around just to be sure. I don't really know where yet. We drove 12 hours to Albany. It wasn't too bad.
Please let us all know what you find out.
Did you need the same veins re-done in Bulgaria the 2nd time?
Kathy
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Postby devine » Wed Sep 22, 2010 6:09 pm

dania wrote:Kathy, I had it done in June (In Bulgaria) restenosed returned 3 weeks later had it done again. I know I have restenosed. I am going to try for a third time in Albany. I wonder if the long flight has anything to do with restenosing. I am going by car to Albany. It is only a 5 hour drive from where I live.


Thank you for sharing this with us, as I've been questioning this.. I'm trying to make a decision of trying it for the 2nd time knowing that I'm not going to stent... if it is really worth it or just better off waiting a bit (since I'm still able to function daily) until my symptoms are bad and then go for the stenting... (problem with stenting is not being able to get help here in Quebec that scares me the most...) This has confirmed what I have been thinking and wondering if it's worth trying it a second time without stenting... so now I know 2nd time around will have to be stenting... which I'm not ready for at this point... As you mentionned about the flight... I wouldn't think that would be the cause... (but I don't really know...) Do you think you would put stents in this time?? Good luck!

Donna : )
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Postby Kathyj08 » Thu Sep 23, 2010 5:16 am

At this point, I am not ready for stents. Dr. Mehta says he keeps in contact with companies that make stents and devices and he feels that something will be designed in the near future more for the veins. That's hopeful.
I am not sure I will go somewhere for the 2nd time around or wait a bit.
I do know that the improvements I felt, would not be placebo. If a person has balance issues either due to blood flow or problems in the brain, you wouldn't be able to get around quickly like I did on those moving belt things you can get on to get through the airport quicker if it were placebo. I rode on several of those and you know how it is when you first step on or off, it throws you off a little. (even the normal people). Placebo would not allow that to happen. I could even talk to my husband as we were hurrying through. I would love it if that continued longer than it did.
I believe in this. Just more to learn and understand.
Kathy
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Postby livabird » Thu Sep 23, 2010 5:32 am

vein stents are not a new thing they have been around at least 20 years for other conditions. Kidney dialysis patients May Thurner syndrome to name a few do your own research and you will see.

Liva
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Postby Kathyj08 » Thu Sep 23, 2010 6:04 am

Liva,
Your turn is coming up soon. Good luck. They seem very knowledgable there!
Kathy
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Postby dania » Thu Sep 23, 2010 6:46 am

devine wrote:
dania wrote:Kathy, I had it done in June (In Bulgaria) restenosed returned 3 weeks later had it done again. I know I have restenosed. I am going to try for a third time in Albany. I wonder if the long flight has anything to do with restenosing. I am going by car to Albany. It is only a 5 hour drive from where I live.


Thank you for sharing this with us, as I've been questioning this.. I'm trying to make a decision of trying it for the 2nd time knowing that I'm not going to stent... if it is really worth it or just better off waiting a bit (since I'm still able to function daily) until my symptoms are bad and then go for the stenting... (problem with stenting is not being able to get help here in Quebec that scares me the most...) This has confirmed what I have been thinking and wondering if it's worth trying it a second time without stenting... so now I know 2nd time around will have to be stenting... which I'm not ready for at this point... As you mentionned about the flight... I wouldn't think that would be the cause... (but I don't really know...) Do you think you would put stents in this time?? Good luck!

Donna : )

I had 1 stent and I stenosed just past the stent.This has happenned to other as well.
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Postby livabird » Thu Sep 23, 2010 6:48 am

thanks kathy i feel pretty confident but i am sooo squeamish anything is better than this.

liva
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Postby dania » Thu Sep 23, 2010 6:53 am

Kathyj08 wrote:Dania,
I've been wondering how you are doing.
I've also wondered about the long flight and decided that I will most likely drive for the 2nd time around just to be sure. I don't really know where yet. We drove 12 hours to Albany. It wasn't too bad.
Please let us all know what you find out.
Did you need the same veins re-done in Bulgaria the 2nd time?
Kathy

All 3 veins were done again. As they were now closed more than they were originally. And I had blood clots in the stent which the doctor managed to cut up.
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Postby devine » Thu Sep 23, 2010 9:22 am

Kathyj08 wrote:At this point, I am not ready for stents. Dr. Mehta says he keeps in contact with companies that make stents and devices and he feels that something will be designed in the near future more for the veins. That's hopeful.
I am not sure I will go somewhere for the 2nd time around or wait a bit.
I do know that the improvements I felt, would not be placebo. If a person has balance issues either due to blood flow or problems in the brain, you wouldn't be able to get around quickly like I did on those moving belt things you can get on to get through the airport quicker if it were placebo. I rode on several of those and you know how it is when you first step on or off, it throws you off a little. (even the normal people). Placebo would not allow that to happen. I could even talk to my husband as we were hurrying through. I would love it if that continued longer than it did.
I believe in this. Just more to learn and understand.
Kathy


I totally understand how you feel about the stents.. as I`m in this category... as for stents.. I wouldn`t have so much a problem.. if we could only get help here (in our country) if something were to go wrong... that`s is my 1st big issue.... as I have young kids that I have to be here for.... I do beleive that there will be better stents that will be made as I heard that they were working on that also.... about the clotting and all... so I think I will wait for my 2nd operation.. if it were to be a year after or so... as for the first time around... it was great... to feel all the energy.. and no more pain in my ear and throat... can`t wait to get back to that point... do believe it`s coming sooner than later... Good luck...

Donna : )
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Postby Kathyj08 » Thu Sep 23, 2010 11:01 am

Thanks! you too!
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