CCSVI in Bulgaria

[alanbrowne]

Hmmm. this does sound a little worrying.
I've not read anywhere about anyone having similar issues from Poland with regard to stents, the severe pain and the clogging up.

I'm due there in just over 2 weeks and was prepared to have a stent if necessary, but if there are problems in the days after, would that mean flying back to Bulgaria for tests?

Feeling a little concerned at the minute, will be interesting to read TIMS users posts within the next week or so on their experiences.

Alan

[caraboo]

I'm a little worried myself too. Like Alan i was prepared to have
stents if needed. Its the fact that you are not near home, and the
medication sounds a bit mixed up. Maybe we should follow blood thinner
protocol that Poland is following.


Caraboo

[alanbrowne]

Hi Karen,

Hope you are well?
I'm sure they know what they're doing, but reading stuff like that doesn't fill you with confidence about going to a foreign country hospital.
Sure it will all be fine, just be very interested in reading others comments, I know pink is there now.

Alan

[LR1234]

i think it might be worth finding out the stent material. Maybe people are having more reactions to the stents used in Bulgaria than the ones used in Poland.

[caraboo]

Hi Alan,


I am fine. You must be getting nervous as the time gets nearer.
Alan dont know if you can help me, what holiday insurance company do you use? Im usually with the post office, had a fall in October last year, ended up in hospitals with severe concushion, dont know if i have spelt that right, but because of this they are putting an extra £125 on the policy. Just wondered if i could get it cheaper.


Take care
Caraboo

[alanbrowne]

Hi,

Yes getting nervous but also very excited at the same time
We have an annual policy through our Bank - HSBC so can't really help I'm afraid.
I suspect they will all want to charge you more because you claimed recently though.

Alan

[costumenastional]

This is very worrying My appointment is next week.
Grozdinski told me that patients had reported significant improvements and that none had worsened. Of over 50 patients treated there were no complications.....

A bulgarian friend of mine has been surfing through their posts. There are some complications. I am posting below for everyone to make his own conclusions ok?

"The doctor who is doing this (the procedure) is called Ivo Petrov and everyone says that he is very good in his job."
So, Grozdinksi is not performing the liberation himself for whatever reason which i think is not important.

Also:

"You know very well that i`m checking often our MS forum and is not a problem for me to read the lates news my dear actually i already did it and now i`ll let you know everything i read there . Some of them are telling that the first 10 days are the worst ... they have terrible headache , they can`t sleep , eat , they feel pain in their neck lack of power to any perceptible mainly walking , but others are feeling good even after the first day . One girl is feeling full of energy , other says that her memory capabilities have increased dramatically , reducing spasticity , one of them says "I feel that my bad days are less bad , but best are slightly better" in his good days he can walk without his stick ... most of them are feeling good my dear . I read only for one complication in there ... one guy have partial thrombosis of one of his stents . He said that he was informed about the risk and he was expected this and even all this complications he'd done the same choice . That's all my dear ... everyone says that the doctors in Tokuda Hospital are fantastic and good professionals i`m sure that you`ll be in very good hands there . "

She lives in Sofia, her english may not be perfect but still...
Anyway, hope that helped a bit. Please have in mind that this girl is very intelligent and if she thought that they are not good she wouldnt allow me to be there next Monday.
And yes, Grozdinski's team is stenting. Big time.

[pmouse]

Thanks costumenastional for encouragement but I am still wondering if Prof. Grozdinski and his team were on protocol education with Dr. Zamboni or did they come to final procedures by them own.

I am a bit worried so I need more informations.

[costumenastional]

I understand.

From what i know he doesn't know Zamboni. I dont think that he is following his protocols either. In fact, Simka recently said that Zamboni's protocols are far from ideal. He made the discovery, no doubt, but every vascular surgeon that is performing liberation procedures nowadays has his own way of dealing with the problem(s).

And the fact is that most docs out there are afraid to stent for reasons well explained. Grozdinski is not one of them, i can tell you that.

Having that said i must insist that only a plebography will find the real problem (if there is one) regardless of doppler and MRV protocols so it all comes down to one question:

to stent or not to stent?

Good luck on your quest for more info friend.

[Ketchup]

Hi everyone!

After informing about Dr. Petrov and his team we decided to go to Sofia for CCSVI diagnosis and treatment. (We, that is my mother-in-law who suffers from MS, her husband and myself - I accompany her since I am a Medical Doctor and although I am doing research and not clinics am able to inform and reassure her a bit).

We flew to Sofia today and arrived in the early afternoon. Service was great during the flight (Bulgarian Air) - we were assigned legs-free-seats - as well as at the airport - we were accompanied from the airplane to the baggage-belt to customs and could skip waiting lines.

Behind customsLisa from Geya Tours was waiting for us. We were brought directly to Tokuda Hospital.

Sofia is a beautiful city, surrounded by mountains. It is 20 degrees Celsius and the sun is shining. We can see the mountains from our hospital/hotel rooms.

We are staying in single-bed hotel-rooms in Tokuda-Hospital. We got great dinner and everybody treats us nice. Until now, communication in English was possible without any troubles.

We have our appointment with the doctors tomorrow. I will let you know how everything is going.

If anybody has already experience with Dr. Grozdinski or Dr. Petrov or any advice, we are happy to hear from you!

Good luck to all of you!

[msjen]

I am scheduled for early July in Sophia, and since I am going through a relapse right now can't wait to be there. I am, however, worried about the procedure (as with any surgery) and it seems like there is more to find out here...

[sofia]

Been going through all the bulgarian posts now using translator, and found the same as costume.....'s friend was saying. And if looking at the usernames there was mainly one complaining about the pain, there was even a bit of an argument about him putting others off, as most of them had experienced a procedure free of pain.

I'm not so sure if it is a bad thing stenting, it saves us coming back every six months, or sooner. As long as we are paying for it ourselves, I'm not sure how much of an realistic option that is to most of us. It isn't to me, anyway.
As long as they know what they are doing with the stents, that they choose the right sized, and adapted stents, and that they do not put them in, if it is not considered to be safe. It is different in a clincal trail, they got more rules and regulations to follow, and also different risk assesment. The hospitals in Bulgaria, Poland, India etc they need to deliver a product that we will be happy with, and a lasting result. As we can come back, every now and again to be reballooned.

Looking forward to hear Ketchups update of mother in laws operation tomorrow, or someday soon, same for costumenta.... and the others on sunday. Pink sapphire is down there now, for her operation. Very exciting for all of us.

[caraboo]

Hi sophia,


I agree with you, all day i have been thinking about the Bulgarian forum and what they had to say. I pretty much understood it to be saying the same things that costumenational and yourself said. But like you, I think they are highly thought of doctors doing the procedure, they would do the procedure the safest way they can, and at the end of the day we are entering into something new and there is risks involved in any surgical procedure whatever it is for.
But the benefits we could have after the procedure outway the fears that I have, and if they are offering stents, I am taking them. Lets hope and pray we have ccsvi.

Caraboo

[colapesce]

I asked Prof G what the deal is with thrombosis and previous patients.

He says...

Yes, although rare, may occur stent thrombosis. It is therefore necessary to take anticoagulants. Thrombosis is not dangerous and may be opening.

This has put my mind at rest a little

[ndwannabe]

Hi everyone!

After informing about Dr. Petrov and his team we decided to go to Sofia for CCSVI diagnosis and treatment. (We, that is my mother-in-law who suffers from MS, her husband and myself - I accompany her since I am a Medical Doctor and although I am doing research and not clinics am able to inform and reassure her a bit).

We flew to Sofia today and arrived in the early afternoon. Service was great during the flight (Bulgarian Air) - we were assigned legs-free-seats - as well as at the airport - we were accompanied from the airplane to the baggage-belt to customs and could skip waiting lines.

Behind customsLisa from Geya Tours was waiting for us. We were brought directly to Tokuda Hospital.

Sofia is a beautiful city, surrounded by mountains. It is 20 degrees Celsius and the sun is shining. We can see the mountains from our hospital/hotel rooms.

We are staying in single-bed hotel-rooms in Tokuda-Hospital. We got great dinner and everybody treats us nice. Until now, communication in English was possible without any troubles.

We have our appointment with the doctors tomorrow. I will let you know how everything is going.

If anybody has already experience with Dr. Grozdinski or Dr. Petrov or any advice, we are happy to hear from you!

Good luck to all of you!

Ketchup, best of luck to you guys! Please update as you can.

I just received the confirmation that I have been placed in line for Nov/Dec 2010. Keeping my fingers crossed.

Will also go to that forum that you guys are talking about. I speak Russian and Ukrainian, alphabet is the same, so the chances are I will understand about 60% of what is being discussed