CCSVI in Bulgaria

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

Postby colapesce » Wed Sep 08, 2010 4:51 am

hi Bozi,

Follow-up Doppler is €600 and procedure is slightly less than the first time; then there's the cost of stents, if needed. There will be a price increase from November!

http://www.tokudabolnica.bg/en/page/733 ... ical_Costs
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Postby colapesce » Wed Sep 08, 2010 5:02 am

I had the procedure in early May and felt brilliant for 1 month, then started to feel worse each day so booked my follow up for October. Since stopping the Plavix and Detralex I'm now starting to feel better again, but still not as good as the first month. I also, stupidly, went straight back to work after the procedure which didn't help (have stopped now).

Since procedure walking and balance have improved so much. Even when I was feeling ill from the drugs my walking didn't deteriorate. All numbness (apart from one side of tongue) has gone! Only feel weakness in limbs (left side) very occasionally - I had this in all limbs. Cog fog is slightly improved. Fatigue is terrible! Worse than before... maybe this is because I now use more energy overall...? Still slightly dizzy.

So, until I go back I don't know if there's any re-stenosis or not. One day I think yes, then another day I think no. I had a lot of stenosis (no stents though) and maybe only one of the veins has closed... will have to wait and see!

No matter what - I don't regret any of it.
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Postby devine » Wed Sep 08, 2010 5:28 am

Hi Colapesce,

I did the exact same thing as you.. I got operated end of May and then the day after coming back I was back at work. The first month was great however the meds made me feel very dizzy and even felt like fainting.. believing that it gave me low blood pressure. No stents were put in even though they suggested it.. I am off from work right now trying to figure out all the confusion in my head before going and hopefully will not be going back to work right after operation this time... if I do decide to stent.... Will be back once again this October 10th.. Maybe we will be seeing each other down there.

Take care,
Donna
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Postby colapesce » Wed Sep 08, 2010 6:16 am

A piece from a Canadian paper on Tokuda/CCSVI
http://www.thestarphoenix.com/health/Bu ... story.html
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Postby colapesce » Wed Sep 08, 2010 6:18 am

Hi Devine,

I arrive on the 6th and will be in Sofia until the 13th, so I can come back to visit you if I've already left the hospital :)
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sofia

Postby LivabirdsHubbie » Wed Sep 08, 2010 7:06 am

Hi Colapesce and Devine(Donna)
Me and Livabird(Jayne) will be arriving in Sofia on the 6th of October until the 14th, would be great to meet up
I believe we are staying at the hospital on the 6th thru the 10th and hotel Greenville on the 11, 12 and 13...

Will have to exchange details if you like

Not long now
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Postby colapesce » Wed Sep 08, 2010 7:32 am

hi Liva's hubbie.
I believe we're on the same plane over!
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Postby LivabirdsHubbie » Wed Sep 08, 2010 7:39 am

Wow didn't realize that...
You are flying BA then from Terminal 5, think around 8:30am or there abouts...

Will keep an eye out for ya :D
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Re: sofia

Postby devine » Wed Sep 08, 2010 10:04 am

LivabirdsHubbie wrote:Hi Colapesce and Devine(Donna)
Me and Livabird(Jayne) will be arriving in Sofia on the 6th of October until the 14th, would be great to meet up
I believe we are staying at the hospital on the 6th thru the 10th and hotel Greenville on the 11, 12 and 13...

Will have to exchange details if you like

Not long now


Hi Colapesce and Livabirds (Jayne and hubbie),

I will be spending a couple of days before in Paris and arriving on the 10th in Bulgaria will be seen on the 11th at the hospital and leaving on the 15th... Staying at greenville this time... Definately would be great to meet up with you all..

See you guys very soon.... Are you going to be bring your computers... so we can check where your at or what room you might be in?

Donna
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Postby devine » Wed Sep 08, 2010 11:19 am

colapesce wrote:A piece from a Canadian paper on Tokuda/CCSVI
http://www.thestarphoenix.com/health/Bu ... story.html


Thank you for this as it was a great positive read...
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Postby ven » Thu Sep 09, 2010 9:25 am

hello donna

i went and when he did me the scan he said a open and perfect and i yold him am still in pain....
so he gave me tjis new herbal pills
will keep u update if u want
xx gdluck
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Postby devine » Thu Sep 09, 2010 10:05 am

[quote="ven"]hello donna

i went and when he did me the scan he said a open and perfect and i yold him am still in pain....
so he gave me tjis new herbal pills
will keep u update if u want
xx gdluck[/quote


Hi Ven,

Yes, please keep me posted. Has this new herbal pill helped you yet with the pain... How long have you been in pain from the operation... If I remember correctly they didn`t put any stents... So other than the pain this is great news.. your vein is still open... Are you feeling any differences and do you find that you still have symptoms on different days that comes and goes... I`m just curious as I do still have symptoms and the first thing we think is that it has blocked again. I`m hoping that when I go back all will have stayed the same... Will be pretty happy with that kind of news and then I can continue on traveling a bit threw europe for the rest of the week....

thanks
Donna
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Postby ven » Fri Sep 10, 2010 2:52 am

hey donna

message me private pls sp i give u my msn so i give u every detail and names of pills...till now nothing change for me only my pocket change it went lighter lolol
regards
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At Tokuda 1st-5th Oct

Postby danw » Fri Sep 10, 2010 3:53 pm

Hi, we will be at Tokuda hospital 1st-5th October flying from Manchester. If anyone is out there on those dates, please PM me and maybe we can hook up :)
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Check ups

Postby animal66 » Mon Sep 13, 2010 7:59 am

Hey All

How is everyone feeling
Ihad my procedure done in July and feel pretty good for the most part. I still have some areas that have not come back to normal but whatever, I guess time will tell.
I was wondering about followups , did anyone go all the way back for a check up or is everyone doing it back at hame somewhere what!!!!!!!!!!

I was told by my doctor that the machines can differ so much in the readings and results that it might be best to go back to the orriginal machine to have the same results.

Any input on this would be great
WHAT TO DO!!!!!!! WHAT TO DO!!!!!!!
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