CCSVI in Bulgaria

[sisterofms]

Thank you costumensational for posting your experience, hope you soon see some results. Colapesce looking forward to hearing yours - hope all goes well. We are due in Bulgaria in two weeks - very anxious.

[caraboo]

Cola,


Best of luck , hope all goes well for you.


take care
caraboo

[Taps]

Thank you as well costumenastionalfor and Colapesce (as well others) for your posts. They're informative and indeed very helpful!

I've got my treatment booked for end July in Bulgaria (coming in from Toronto, Canada btw).

Been to False Creek in BC and had the MRV/Doppler done. Doppler didnt really detect anything noteworthy but the MRV stated "something may represent a stenosis???"

That was good enough for me to continue on the path to Bulgaria...

Got dx'd with PPMS originally back in January 09, downgraded to RRMS in Feb 09...

[draghci]

We are in Bulgaria too. We have a room no. 514

[colapesce]

I'm in 510. Almost neighbours!
Shall we go visit costume?

Thank you all for the well wishes

[SofiaK]

Dear Costumenational,
I just read your post. I'm glad the procedure went well. I hope you will feel a positive difference very soon.
Fingers crossed for ya!
Sofia

[SofiaK]

Taps, colapesce, and draghci:
I hope everthing goes well for you in Bulgaria! It's nice that y'all have each other's company.
Sofia

[AnnaP]

Hi Costumenastional,

Glad to hear your procedure went well. What's important is that you bought yourself some time until the procedure is perfected.

I'm going June 5th, thanks for posting, you put my mind at ease.


Hey Colapesce and Draghci
Good Luck!!!!!!!
Anna

[costumenastional]

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.

i suppose the near future has come. one of them managed to take a few steps on his own. he is greek. his wife woke me up 5 o clock in the morning with tears in her eyes. she told me that after his father's death 7 months ago he was pinned down on his wheelchair. his azy was severely stenosed. i dont know what it is going to be like for him from now on. he has left Sofia today.
a 21 year old sweet girl is on wheelchair also. she has had a stent placed in he criticaly stenosed azy but they managed to balloon their way through her jugs. no changes for her yet.
a slovenian dude with cruches had his right jug severely stenosed and stented. balloons for the other veins of his. he can urinate all of the sudden while before op he was not able to empty his bladder. in fact he urinated on the operating table the moment they opened his jug and he has not stopped eversince. he also feels his legs warmer.
i would say that so far the only one with dramatic improvements is pinksaphire who i wasnt able to meet with.
i really hope that better things will come to us all in the near future but for now i can only tell what i hear see and feel.

for me nothing has happened so far. i still feel like shit, my vision is the same, my tinnitus is also there, numbness, fatique...well everything is the same.
there might be a few reasons for this:
1)ccsvi doesnt apply to me
2)it does but it will take longer to see some improvements
3)they didn't open my veins as they should

all i can do now is wait and see one more time.

dont get me wrong. Zamboni is ABSOLUTELY right this vein thing. Everyone have veins issues when it comes down to ms. it s the liberation procedure outcome nobody knows. and this is the only thing you got left with at the end.

i dont really know what exactly they fixed in me. i asked them many times even when i was on the operating table and all i know is that i had a very mild stenosis (30%) in my right jug, 2 stenoses more severe in my left (one high and one low and this makes sense cause my optic neuritis was in my left eye) and one moderate stenosis in my azy. i have 2 cds of my op which i ll try to upload somewhere for all to see but my guess is that only Sclafani could identify the severity of the problems.
some wishful thinking would be that ccsvi has been damaging my cns for the last 6 years silently until i was diagnosed in late 2008. after all my first symptom was in 2004. moderate stenoses related with my ms outcome so far from that aspect.
so now i am liberated but the effect may come slow... at least i hope.

of course i would be very happy if only i could stop my progression. but for me it will take at least some kind of improvement to believe that this has anything to do with my condition. i ll be around to let you know either way.

i really thing that EVERYONE should get tested and treated for ccsvi. there is absolutely no reason for someone not to. having said that, please, keep your feet on the ground and see this like something you have to take out of the equasion whatsoever. you ll never know if you dont.

collapesce (whose laptop i am using at the moment) and probably chris..something will be operated today. i wish them luck. i ll be around until friday when my flight is arranged so i ll be around to reply any questions.

later.

[sbr487]

Costume, its still early days, everyone is learning. I dont think we still know everything about CCSVI we should know. And there lies the difference between one person doing well after liberation and another not. I am sure this is a question that will surely be answered in few years. Thats an obligation that every Dr will be compelled to fulfill at some point ...

[prairiegirl]

Costume, thanks for your honest and detailed report. It does seem that some people are posting re improvements over time, rather than immediate changes. I hope this will be the case for you-- all the very best!

[RobSandra]

Hi
we are new to this site and scheduled for Sofia in July. What can you tell us about the Hospital hotel and the Greenville hospital? We are looking to finalize our trip particulars and appreciate any comments/advice?
thks

[Taps]

I'm slated for July's end and sent back a confirmation message... awaiting to hear next steps...!

I'm exicted and nervous at the sametime... little on the fence about stents, but this might be a spur of the moment decision when the time comes... (given they detect something)...

Costume: Thanks for the details... Hope this does work out for the better for you! At a bare minimum, you've put the curosity to rest as to how this could affect you...

Taps

[Niceflow]

Thank you, Costumenastional for your detailed account. I hope this will improve your condition also. Give it a few weeks to see how it goes. At least, the blood must be flowing much better now, this in itself is a positive thing.

I am glad we are getting some timely feedback now about the procedure in Bulgaria, because up till now, we were wondering about what happened with the Bulgarian patients. So, we need this feedback to make our mind.

Thank you again for your time.

[Donnchadh]

With the venous problems you described, I am wondering if the veins have re-stenosised? Some patients report having their veins re-stenosis while still on the operating table.

Hope you clear up.

Donnchadh