CCSVI in Bulgaria

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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sofia
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Post by sofia »

Thank you for your post and your update. Hope your mother-in-law is doing well after her procedure.
As soon as I got the apointment I started researching the hosptal, and my impression is exactly what you are describing; a modern state of the art medical facility, with well qualified staff. And I'm sertain we will all be in the best of hands. I trust them to use the apropriate stents, and if I should have stenosis anywhere its not ideal to stent, I trust them to leave it be. Who am I to argue with an experienced surgeon! After all he has the PhD, not me.
<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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slody
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ccsvi bulgaria

Post by slody »

Hi,
When I click on pinksapphires link to her facebook I'm asked to log in,which I do but then it just goes to my home page. Can anyone tell me how to do it?
Thanks,
Slody.
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colapesce
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Post by colapesce »

http://www.facebook.com/home.php?#!/pro ... =530716100

try copying and pasting the whole thing and it should work. I did the same thing as you first time :)
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slody
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Post by slody »

Hi colapesce, paste it into the search box? Still not working.
Slody.
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Algis
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Post by Algis »

copy the whole

http://www.facebook.com/home.php?#!/pro ... =530716100

in your browser location and hit enter

(it stop at the "!" in the URL)
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LexISF
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Post by LexISF »

Try this folks...

http://www.facebook.com/profile.php?id=530716100

BTW: Any updates from anyone after visiting Bulgaria?
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Niceflow
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Post by Niceflow »

Could somebody tell us how is Pink doing after her operation? Not everyone here goes easily to Facebook..

Pink, could you please update us on your condition.. it will be much appreciated.. many of us want to have an impression about the interventions done in Bulgaria... Please share ! Thanks !
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sofia
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Post by sofia »

If I'm not mistaken colapesce, and costumenastional are in Bulgaria now. It will be exciting to hear from them.
pinksapphire has allready had her procedure done, and from what I've read so far, she seems to be happy with both the hospital and the results of procedure.
Have to check in on here many times a day, to see if there is any updates, any happy stories and good results.
This time next week, Ill be in Tokuda hospital waiting for my tests and procedure.
<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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Post by costumenastional »

Hi all.
I have had the operation yesterday. They found 2 blockages in my left jug and a mild one (30 %) in my right one. They also found a blockage in my asygos. Sorry for the spelling, slovenian keybord.
They used only balloons. I ll let you know of all details soon.

I do not feel any better or worse. I feel exactly as i was before the operation.

I hope i ll see a difference in the future...

2 ppms patients were found to have severe asygos stenoses and stents were placed in order to keep them open.

Anyway, i must admit that the outcome didnt meet my high expectations for instant relief. I am glad i fixed my blockages of course but i really dont know what to expect at the moment.

One last interesting thing. Grosdinki performed a doppler on me just before the operation. He told me that he could see critical blockages in both my jugs. This was the same i was told in Greece before i came here.
The flebography didnćt show the same outcome, There were stenoses in my left jug but from what i could tell looking at the monitor, not so critical. In my right jug things were smooth with only 30 percent stenosis. The ineresting part is that after left jug and asy angioplasty the doppler today showed that both my jugs are 5mms instead of one that they were before. I asked him how come there is such a difference in my right jug even though the balloning wasnt even necessery. He told me that there is a possibility that the asygos balloning may have something to do with it. They dont know how all these may interact with each other.

I ll have to come back in Sofia in 6 months time and i ll be on anticoogulants until then.

Sorry for the grey news. I wish i felt better to share with all of you but i dont. Talk soon cause this laptop is not mine.

ps. they are good at what they are doing here.
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caraboo
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Bulgaria

Post by caraboo »

Way to go costumenational,



I wish all the luck in the world.

Caraboo
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sofia
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Post by sofia »

And ten minutes later there was an update :-)
Thank you for that.
Sorry to hear about your disapointment, when it came to emediate benefits. Now only time wil tell, if it was really worth it for you. Patients have reported a gradual improvment as well as imediate results, so fingers crossed for you!
Again thanks for letting us know. Hopefully the other patients will post on here ith their results as well.
<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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colapesce
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Post by colapesce »

I've just arrived at the hospital! Was met at the airport by Lisa (Geyatours) and driven here (20 mins). Am now in the hospital hotel. Won't be having any test/medical treatment today so no news there yet. Will try to catch up on sleep now.

Wi-fi in the room is good!
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costumenastional
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Post by costumenastional »

i am in room 611 in the 6th floor cardiology dpt. i ll be around for a couple of days. just ask for Spiros. all nurses know me here ;)

btw, i d also like to let you know that they will stent only if needed.

from what i hear from other patients (we are quite a few) they were trying many times to inflate the balloons without success prior to stenting.
the stents they use are most often self expandable.
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Niceflow
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Post by Niceflow »

Thank you CostumeNational for sharing with us all this information. This is much appreciated. Wish you the best of health and hopefully the procedure will yield good results in the near future.
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Niceflow
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Post by Niceflow »

Costumenastional, you said:

"2 ppms patients were found to have severe asygos stenoses and stents were placed in order to keep them open. "

Is it possible to keep in touch with these two patients to see how their situation will evolve in the near future? Do they speak English.. I am very interested in contacting them if they are willing. Thanks for your help.
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