CCSVI in Bulgaria

[costumenastional]

Rick, thank you for letting people know man. Really...
I got a question for you though. Maybe you have already answered and i missed it.
How come they didn't treat the azy in Poland? Are you sure they didn't check it? I mean, once they got inside they should probably take a look down there regardless of messing with it or not.
Are you sure they didn;t even check it?

Take care man. Jayne rocks.

[livabird]

Hi Spiros,

Well they said they checked it.... but we are not convinced with this...
Maybe it is wishful thinking... but even if there is a slight chance... it is worth the money to get it checked in Bulgaria.
It seems that Poland do very little treatments on the azygos...
Maybe it will turn out that they are ok, but we need to know as Jayne is getting worse and worse...

Really great talking with you and Jayne really enjoys your chats...

Take care Bud

[costumenastional]

Nice talking to you too. Stay cool.

[devine]

Hi Spiros,

Well they said they checked it.... but we are not convinced with this...
Maybe it is wishful thinking... but even if there is a slight chance... it is worth the money to get it checked in Bulgaria.
It seems that Poland do very little treatments on the azygos...
Maybe it will turn out that they are ok, but we need to know as Jayne is getting worse and worse...

Really great talking with you and Jayne really enjoys your chats...

Take care Bud

Hi Bud,

I was in Bulgaria back on June 1st and there was this lady who also had the operation done in Poland and came to Bulgaria the same time I was there to have her azygos checked since some of her symptoms were coming back.... come to find out they missed it in Poland.. so tell your wife there is still hope and don`t give up, all is going to work out fine for her.

Donna

[CCSVIhusband]

I've said all along (not that I'm a doctor, just someone who's read as much CCSVI material as is out there - thanks Cheer and others) ... if they don't find the azygous problems, they didn't do it right ...

That's a key ... and reading the link Costumenastional posted ... Dr. Zamboni seems to imply as much.

He found issues in 86% of azygouses he checked.

My wife had issues there (a web or septae) which basically shut off outflow from the spine ... we're glad it was caught early in her diagnosis of MS ...

[livabird]

Thanks Devine and CCSVI Husband... great name by the way...
Well it will be another adventure for us... after Poland it will be hard to beat... As you may or may not know, our flight was cancelled due to the volcano, so we packed up the car and drove from Northampton UK to Poland, travelling through England, France, Belgium, Holland, Germany and then Poland...

This wont be as adventurous but hopefully a better outcome non the less.

Thanks again

[ales]

OK people... so we are in the home stretch now. We leave next Sunday for Sofia and after 18 years living with this Beast I am more than a little excited. At this point I have read so much and watched so many videos I'm ready... I think. A huge thank you to all of you who keep the faith and continue to post even after you have had the procedure. Your stories are all truly informative and inspiring. I have read that we do need to bring certain items when staying at the "hotel" in the hospital. things like toilet paper. Do they really not provide toilet paper or soap or shampoo??!!!! Not that these are really big deals but if we don't have them they sure could be. Anyway please let me know so that I can pack whatever is necessary. Maybe I can even recoup some if not all of my expenses by bringing extras and setting up a small commissary in my room.

[girl69]

Hi everybody

I was wondering if anyone knows if Dr. G. enters through the left femoral vein and if he also checks the spinal venous system (iliac for MT, lumbar veins, hemi-azygos, etc.) ? Also, does he use IVUS (intravenous ultrasonography) ? For those of you going now, good luck !
@livabird : I remember following your adventure in Poland and I was so happy that you had positive results, I hope you get them back ! I also am wondering if they missed my azygos, or something else in Poland, as I haven't had any results. I'm wondering now if Bulgaria would be the right alternative...
Thank you for any info !

[livabird]

Hi girl69, i will keep everyone updated as we go on to our Bulgarian Adventure... I will certainly let you know about any improvements.
We have heard a few stories, I think at least 3 people so far have been treated in Poland but have subsequently gone to Bulgaria where they had the azygos treated.
We are hoping this is the case even though Dr Simka seemed to think they are ok, we are not convinced.
We know the azygos veins do take a lot longer to treat, so that may be the reason they are not treated in Poland, this is my opinion only...

[girl69]

@ Mr. livabird Thank you for your response. Actually I have been thinking along the same line, it of course takes more time to explore more veins, including the Azygos, which from what I understand, is more complex to diagnose...For sure, they can treat more people in a day with the short version and for most people it is sufficient for positive results. Did you read CCSVIhusband's (formerly mshusband) account of his wife's procedure in the US ? The Dr. took 4,5 hrs to explore the veins and found several problems ! Now, that's what I want, not the 4,5 hrs lying on a table, mind you , but a more thorough examination for sure !!!

[CCSVIhusband]

@ Mr. livabird Thank you for your response. Actually I have been thinking along the same line, it of course takes more time to explore more veins, including the Azygos, which from what I understand, is more complex to diagnose...For sure, they can treat more people in a day with the short version and for most people it is sufficient for positive results. Did you read CCSVIhusband's (formerly mshusband) account of his wife's procedure in the US ? The Dr. took 4,5 hrs to explore the veins and found several problems ! Now, that's what I want, not the 4,5 hrs lying on a table, mind you , but a more thorough examination for sure !!!

I was just going to comment on this ... but it looks like Girl69 beat me to it.

Yep, 4.5 hours for our procedure here in the states, a lot of checking for azygous and the other veins (left entry) ...

That's why I got so worried while the procedure was going on (I really was sweating it out ... pacing the halls, etc.) ... because I heard all these accounts of 45 minutes, or 1.5 hours ... and then it's going on 2.5 to 3 hours and I've heard nothing in the waiting room. So the staff called back and checked on her for me (they could tell I was anxious) and they responded it's going great, and gave me updates from then on.

Anyway, with the same doctor we used, apparently ALL the procedures are taking about that 4.5 hour time-frame ... and the doctor is learning more. He is having a few of his first patients come back because of the left entry and some other things he is seeing.

I'm telling you (all), if you didn't get the azygous fixed (or looked at) ... MOST LIKELY something was missed. It's well worth being on the table for 4.5 hours if they're being through in my (and wife's) opinion. Plus if they were, then you wouldn't have to be going to Bulgaria IN ADDITION.

[markdoc]

Hello all. I received confirmation of a July 27th date for testing. I went through the bg medical tourism website. They originally offered me a July 6th date which was too early and subsequently gave me July 27th. This was all really great news except I'm not sure how 'confirmed' I am. I have a letter and a string of emails but nothing further. They also want 500 eu as a downpayment. I've been dealing with Irina; anybody have a similar story? Thanks, Mark

[vivavie]

Hi CCSVIHubby! I have been following your wife story! I wish someone around me would be as involve as you are! With ms fatigue it is hard to keep battling, searching and doing all the argumentations to convince doctors to do the procedure here (quebec) or close. I wish your doctor would come out of the closet then maybe more doctor would be interested...

I also went to Poland during the volcano period, we were the 1st flight out. I have a stent (left jug) but they could not get INTO my Azygos!?!? I had some benefits that I pretty much all lost after 6 weeks except for legs stiffness.

I have a date to go back to Poland and another for Bulgaria. I called Albany, I read the wait is long... What to do? Go for nothing? I can't find a dam Dr to do the follow up here.

I am very very suspicious of the low treatment everywhere of the Azygos. Even in Bulgaria, not too many Azygos stenting report.

[girl69]

@vivavie : I worry also about Bulgaria not investigating thorougly enough to be worth going there. From what I read, they also do a short version of 1 hour... Anyone heard anything else ?
Thanks !

[Koko]

Hi Liva bird, girl69, ccsvihusband and others.

Livabird try and keep your chin up. Yours was one of the stories I followed when I started reading on here at first round about the time you were getting nagged about typing in caps REMEMBER. Anyway I was in Bulgaria 25th June getting treated and it seemed to me that the azygos was difficult to assess by doppler and was checked at op time by venogram. I was talking to 2 other girls who were also told initially nothing found on azygos but once checked by venogram something was found. I think an awful lot of people will have been missed if azygos not checked/only doppler used. The doppler obviously can't be good for locating difficulties in this area. In Bulgaria I was in for about 3-3.5 hours starting with Azygos then right jug and then left jug. It didnt feel that long at the time but my back was really louping after it and was worse for me than the op! Good luck to all of you heading out to Bulgaria I hope it all works out for you!!

Koko