Hello Costumenastional and the others
I meet Costumenastional in my room. I have ppms diagnosed in 2005, many symptoms even before. My diagnostics and whole procedure was done in 4. May - ballooning in both jugular veins. I expected my azygos but it was OK. I had no relapses.
After procedure I still do not fell any changes.
All the sisters and doctors were very nice and helpful. The hospital is really great and has all needed things.
I am one of the four Slovene patients.
I don´t expect fast recovery but I think that last symptoms will disappear the first (LIFO). My co-patients noticed that I am more stable when walking and standing, so maybe my balance improver a little.
CCSVI in Bulgaria
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whyRwehere
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Costume N,
Well congratulatons on getting something done. I am interested in your width numbers...you say your Jugs are 5mm. My husband's left jug went from .5mm to 7 and then 10mm the last go. Do you think there is room to widen yours a bit more? Did they check high enough? My husband had one blockage very high up almost to the brain. Is there a guide to the width size we should be aiming for...I know poor Rici is too wide, so what is ideal?
Why
Well congratulatons on getting something done. I am interested in your width numbers...you say your Jugs are 5mm. My husband's left jug went from .5mm to 7 and then 10mm the last go. Do you think there is room to widen yours a bit more? Did they check high enough? My husband had one blockage very high up almost to the brain. Is there a guide to the width size we should be aiming for...I know poor Rici is too wide, so what is ideal?
Why
I am in Sofia, Bulgaria, at Tokuda Hospital.
I agreed to come and give Dr Grozdinski my business and trust and so I arrived on 4 May and was tested the following day via Doppler ultrasound. This was done in a room off of a hallway where there were obviously four or five technicians with the doctor while he performed what seemed to be a very thorough Doppler ultrasound.
After returning to my room and remaining there for I guess about five or six hours I was called to report for the operation I was brought up and undressed I put on the towel I got up on the operating table laid down and sat on my hands.
they proceeded to operate.
not too terribly painful at all, quite bearable actually.
My feet feel warmer my hands feel warmer both hands and feet have better color and I have less fatigue and these things are for sure.
While you're laying there being operated on you can monitor what they are doing, euro I chose to close my eyes and he told when it would be painful and it was easy for me to deal with that way. what they did with me and what they do typically is they inflate a small balloon and deflate several times and then, if need be, they insert a larger balloon, inflate and deflate it several times, then you're done. Basically.
the cost was €5000 euro.
I think it's fair to mention that while you're there. They will tell you that there is an option of paying 750 more for the doctors.
We paid it I don't think that many of you should feel obligated to pay it especially given the circumstances where they tell you it's 5000, you cross the pond or come to their country expecting to pay 5000 only to be told that it is an option and even a courtesy to pay more in the way of a 750 Euro Dr. fee.
They also did a disability score for me and and goofy punctuation it turns out that I am a 6.0 to 6.5 on the disability scale.
my entries in this forum sometimes get all mixed up especially now that I use a speech recognition software. very difficult to make sensible paragraphs and stay on point but this is the only way I can communicate on here as typing is no longer possible.
So please bear with me as I often have run together sentences and endless paragraphs can't help it
Costumenational/! You are family Spiros very nice to meet you. Keep your chin up. Stay focused on the positive you are a very likable man I hope to meet you again maybe some day in Greece, Santorini Island sounds good! You made a very nice impression on my family and we all like you!
You are family!
Please tell our English friend that it was very nice to meet her as well. I know you'll be speaking with her so tell her I hope she's recovering and experiencing some amazing improvements, she was very refreshing and the real deal, very It's been many years since I could stand on the bathroom floor or IL-4 even for a minute I can stand up for hours on one now and no complaints I was out all night tonight and Sophia and no fatigue I was sort of my neck but no fatigue very happy about that real people she is!
, that's all for now folks. My feet are warmer, my hands are warmer, the colors better. I have far less fatigue today and overall very happy with the early improvements.
My feeling is that these things need to be fixed if you have stenosis or wacko bloodflow you need to have them fixed
I'm not going to bother proofreading this on my little cell phone hope it makes sense any questions don't hesitate to ask goodnight all
Chris
diagnosed 2006
2007 SPMS or PPMS
May 5 2010 diagnosed 80% blocked LIJV, 70% blocked RIJV, 50% blockage Azygus
baloon angioplasty, no stents
Dr. Petrov, Takuda Hospital
Sofia, Bulgaria
I agreed to come and give Dr Grozdinski my business and trust and so I arrived on 4 May and was tested the following day via Doppler ultrasound. This was done in a room off of a hallway where there were obviously four or five technicians with the doctor while he performed what seemed to be a very thorough Doppler ultrasound.
After returning to my room and remaining there for I guess about five or six hours I was called to report for the operation I was brought up and undressed I put on the towel I got up on the operating table laid down and sat on my hands.
they proceeded to operate.
not too terribly painful at all, quite bearable actually.
My feet feel warmer my hands feel warmer both hands and feet have better color and I have less fatigue and these things are for sure.
While you're laying there being operated on you can monitor what they are doing, euro I chose to close my eyes and he told when it would be painful and it was easy for me to deal with that way. what they did with me and what they do typically is they inflate a small balloon and deflate several times and then, if need be, they insert a larger balloon, inflate and deflate it several times, then you're done. Basically.
the cost was €5000 euro.
I think it's fair to mention that while you're there. They will tell you that there is an option of paying 750 more for the doctors.
We paid it I don't think that many of you should feel obligated to pay it especially given the circumstances where they tell you it's 5000, you cross the pond or come to their country expecting to pay 5000 only to be told that it is an option and even a courtesy to pay more in the way of a 750 Euro Dr. fee.
They also did a disability score for me and and goofy punctuation it turns out that I am a 6.0 to 6.5 on the disability scale.
my entries in this forum sometimes get all mixed up especially now that I use a speech recognition software. very difficult to make sensible paragraphs and stay on point but this is the only way I can communicate on here as typing is no longer possible.
So please bear with me as I often have run together sentences and endless paragraphs can't help it
Costumenational/! You are family Spiros very nice to meet you. Keep your chin up. Stay focused on the positive you are a very likable man I hope to meet you again maybe some day in Greece, Santorini Island sounds good! You made a very nice impression on my family and we all like you!
You are family!
Please tell our English friend that it was very nice to meet her as well. I know you'll be speaking with her so tell her I hope she's recovering and experiencing some amazing improvements, she was very refreshing and the real deal, very It's been many years since I could stand on the bathroom floor or IL-4 even for a minute I can stand up for hours on one now and no complaints I was out all night tonight and Sophia and no fatigue I was sort of my neck but no fatigue very happy about that real people she is!
, that's all for now folks. My feet are warmer, my hands are warmer, the colors better. I have far less fatigue today and overall very happy with the early improvements.
My feeling is that these things need to be fixed if you have stenosis or wacko bloodflow you need to have them fixed
I'm not going to bother proofreading this on my little cell phone hope it makes sense any questions don't hesitate to ask goodnight all
Chris
diagnosed 2006
2007 SPMS or PPMS
May 5 2010 diagnosed 80% blocked LIJV, 70% blocked RIJV, 50% blockage Azygus
baloon angioplasty, no stents
Dr. Petrov, Takuda Hospital
Sofia, Bulgaria
Thank you very much for sharing. Very encourageing. Less then a week to go before hospitalization in Bulgaria for me.
Bloody ash cloud again, apparently winds are changing, and Uk might be affected, end of the weekend, beginning of next week. Flying from London early tuesday morning. Op is on thursday. Grrr, fuming, grying, and just simply panicing.
Bloody ash cloud again, apparently winds are changing, and Uk might be affected, end of the weekend, beginning of next week. Flying from London early tuesday morning. Op is on thursday. Grrr, fuming, grying, and just simply panicing.
<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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pinksapphire
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Hi everyone!!!!! Here's a link to my blog about my procedure in Sofia on April 30th. Lots to read! It didn't go flawless, but I have definite improvements. 
http://mymsliberationprocedure.blogspot ... nting.html
http://mymsliberationprocedure.blogspot ... nting.html
hello pink
didn't get anything on your blog. but have to dash. booked new ticket for this afternoon, cos of that bloody volcano
good to hear you have improved. ill have a look somewhere when i get internet conections again.
sophie
didn't get anything on your blog. but have to dash. booked new ticket for this afternoon, cos of that bloody volcano
good to hear you have improved. ill have a look somewhere when i get internet conections again.
sophie
<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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Chris, you are family too man. And your father and bro are fantastic.
Collapesce was found with very severe stenoses onFriday morning but i left after a few hours so i dont know about any immediate improvements for her. I trust she ll let us know soon enough cause she is the cutest
Someone asked me about the appropriate width of the jugs. Without being a doctor i d say 4,5 to 6 is good enough. At least that is what i was told. For the doppler that is, cause once they are in things are usually kind of different.
Please listen. As far as it goes for me the thing goes like this:
i wont say "i think this is better, that is stgronger" or anything like that.
I am VERY happy pinksaphire has such dramatic improvements from day number one. This helps me keep the hope alive. I ll say something when i really know something is there. My ms is mild for now but i will be able to spot the difference right away.
For now i can only say that all of us have ccsvi and we must fix it.
The last week i met wonderful people (Chris is the best dude around but i knew it anyway) and i have no regrets. The Bulgarian team rocks and everything went well.
The most important is that out of 10 people we all have had some kind of vein issues and the most severe ccsvi the most severe ms in general was the picture.
Fix your veins and pray
See you all on Monday.
Collapesce was found with very severe stenoses onFriday morning but i left after a few hours so i dont know about any immediate improvements for her. I trust she ll let us know soon enough cause she is the cutest
Someone asked me about the appropriate width of the jugs. Without being a doctor i d say 4,5 to 6 is good enough. At least that is what i was told. For the doppler that is, cause once they are in things are usually kind of different.
Please listen. As far as it goes for me the thing goes like this:
i wont say "i think this is better, that is stgronger" or anything like that.
I am VERY happy pinksaphire has such dramatic improvements from day number one. This helps me keep the hope alive. I ll say something when i really know something is there. My ms is mild for now but i will be able to spot the difference right away.
For now i can only say that all of us have ccsvi and we must fix it.
The last week i met wonderful people (Chris is the best dude around but i knew it anyway) and i have no regrets. The Bulgarian team rocks and everything went well.
The most important is that out of 10 people we all have had some kind of vein issues and the most severe ccsvi the most severe ms in general was the picture.
Fix your veins and pray
See you all on Monday.
Costumenational and Chris - it was brilliant to meet you both (and your family/friend) - you really made me laugh Hope you're seeing plenty of improvements!
Hope you're seeing plenty of improvements!
Last edited by colapesce on Wed Feb 23, 2011 4:06 pm, edited 1 time in total.
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Vhoenecke
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Dear Colapesce,
I have learned that many people are having BP issues. It must be difficult for our bodies to go through limited flow to all of a sudden have normal flow. Please make sure that you rest and be patient with your body's ability to regulate. This may take some time. Congratulations on joining the liberation team. I hope that you will keep us all posted on your after liberation.
Val
I have learned that many people are having BP issues. It must be difficult for our bodies to go through limited flow to all of a sudden have normal flow. Please make sure that you rest and be patient with your body's ability to regulate. This may take some time. Congratulations on joining the liberation team. I hope that you will keep us all posted on your after liberation.
Val
Alternate URL
For pinksapphire's blog try this URL :
http://mymsliberationprocedure.blogspot.com/
http://mymsliberationprocedure.blogspot.com/
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costumenastional
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Muahhcolapesce wrote: Costumenational and Chris - it was brilliant to meet you both (and your family/friend) - you really made me laugh
Please be assured that coming to Bulgaria is in no way a second choice to Poland.
So good that you are feeling better sweets!!!! Told you, the more stenosed the better haha. Please get back to us once you feel like it.Hello to everybody
I have to report my improvements I noticed last day 9.5. (treated 4.5. in Bulgoria):
- Before I could not walk fast, yesterday I could for 100 m
- I tried how long I can walk before rest - about 400 m
- I tried to run slow and I could about 25 m and back. I didn’t have to mentally control each leg, running was more on my toes – before I could not run at all
- After running or having faster heartbeat my vision is not foggy any more, but it still shakes, I can read letters before I couldn’t
- I can jump with both legs
- My balance improved for 50 % (when standing I can be very still)
I am really happy and waiting for other improvements.
I have to report my improvements I noticed last day 9.5. (treated 4.5. in Bulgoria):
- Before I could not walk fast, yesterday I could for 100 m
- I tried how long I can walk before rest - about 400 m
- I tried to run slow and I could about 25 m and back. I didn’t have to mentally control each leg, running was more on my toes – before I could not run at all
- After running or having faster heartbeat my vision is not foggy any more, but it still shakes, I can read letters before I couldn’t
- I can jump with both legs
- My balance improved for 50 % (when standing I can be very still)
I am really happy and waiting for other improvements.
Last edited by pmouse on Mon May 10, 2010 3:48 am, edited 1 time in total.
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costumenastional
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