help !!!

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

help !!!

Postby atswc » Wed May 12, 2010 5:40 am

how many people has ballooning or stents help or made to feel better im gonna go to bolgaria in a month and have this done i am so scared should i be ?
any repy would be amazing
oh and is sofia bolgaria a good place to have it done ?
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Postby costumenastional » Wed May 12, 2010 5:49 am

hey man/ woman!!! chill out. everything is cool there. just check the CCSVI in Bulgaria thread.

do it. i mean go to Bulgaria...
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Postby colapesce » Wed May 12, 2010 6:16 am

don't be scared - they're the best!

a few of us have been there now so ask any questions and we'll try to answer them.

take care :)
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Re: help !!!

Postby ErikaSlovakia » Wed May 12, 2010 6:53 am

atswc wrote:how many people has ballooning or stents help or made to feel better im gonna go to bolgaria in a month and have this done i am so scared should i be ?
any repy would be amazing
oh and is sofia bolgaria a good place to have it done ?

I understand you but you should feel HAPPY not scared! :)
Do not worry, it will be just fine :wink:
Good luck!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Vhoenecke » Wed May 12, 2010 6:59 am

I have had ballooning and noticed the difference immediately on the operating room table. Do not be scared, be happy that we have something to rid us of these terrible MS symptoms.
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Postby atswc » Wed May 12, 2010 10:02 am

thanks for the reply's can i ask if it is painful at all?
and what would i need to take with me to sofia
do they speak good english and will i have to go back?
is it better to go with someone?
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Postby costumenastional » Wed May 12, 2010 10:02 pm

atswc wrote:thanks for the reply's can i ask if it is painful at all?
and what would i need to take with me to sofia
do they speak good english and will i have to go back?
is it better to go with someone?


it might be painful. the more severe he stenosis the more painful it will be. in that case they will give you medication and you ll be just fine.

you need to take ypurself to Sofia. a laptop would be a good idea, your MS epicrisis and MRIs and everything you would take if you were going for a trip abroad. dont forget the money ;)

doctors spaek english while most nurses dont. usually there will be someone on the 6th floor to talk too in English so no prob there.

i went alone. there is no need to have someone else if you can make the trip by yourself.

relax. like Erika said you should be happy. everything is gonna be just fine. it will be over before you know it.

a piece of advice: after the operation ask for your cds. check them out and before you leave the country have dr Petrov to explain what these cds show in every step.
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thanks!!!

Postby atswc » Thu May 13, 2010 8:22 am

thanks for the advice everyone, this is so new how many people have actualy had this done?
and how far is the hotel from the hospital and i have epilepse should this be a problem?
thanks again everyone for the info
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Re: thanks!!!

Postby CureIous » Thu May 13, 2010 9:58 am

atswc wrote:thanks for the advice everyone, this is so new how many people have actualy had this done?
and how far is the hotel from the hospital and i have epilepse should this be a problem?
thanks again everyone for the info


Scads and scads already. Do your homework, read up on the procedure, possible side effects, complications, all that. We don't give medical advice here, but can certainly point you in the right direction. It is pure foolishness to either give, or receive medical advice from anonymous strangers over the internet. It's like that person tailgating you, "making" you go faster, but when YOU get pulled over, THEY won't be there to pay the fine...

There's tons of stuff in here, check out the patients log for instance, that's a good place to answer some of your questions. Good luck, sounds like you are well on your way...

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: thanks!!!

Postby colapesce » Thu May 13, 2010 11:48 am

atswc wrote:thanks for the advice everyone, this is so new how many people have actualy had this done?
and how far is the hotel from the hospital and i have epilepse should this be a problem?
thanks again everyone for the info


The hospital hotel is on the 5th floor and the ward is on the 6th.
There's a cafe and terrace with a mountain view on the 9th.
Have you mentioned to Prof Grozdinski about your epilepsy? I certainly wouldn't know about that.

Good luck :)
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Postby atswc » Thu May 13, 2010 2:17 pm

colapesce


so you have been?
do i need to take all my medical records with me do you think?
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Postby costumenastional » Fri May 14, 2010 2:07 am

if i was to operate on a patient with local anesthesia i d really like to know if he/she had epilepsy friend.

send an email to them about your epilepsy prior to your visit.

appart from this or any other medical condition you may suffer from:
if your medical records are the size of the Batican library just take the most important with you.
a couple of MRI films that show your MS lesions with your name printed upon them, a piece of paper with the medication you are on and such...
they wont read them after all. they just want to get the picture before the actual procedure.
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Postby colapesce » Fri May 14, 2010 2:53 am

I only had a few letters from my neurologist to my GP, stating any setbacks/improvements/tests/medications. Not much info in them really. I'm still waiting now for my records! I received a letter to say I had to pay up to £50 for them and they'd take 8-10 weeks to arrive - what a joke!
Anyway, these letters I took with me were enough.
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Postby costumenastional » Fri May 14, 2010 3:07 am

I think i should clarify that Colapesce (which i know what it means :) ) means the papers that she is waiting for are from the NHS. Bulgarians are quicker ;)
Right girl?
I also think you should find something better to do with your 50 pounds...
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Postby colapesce » Fri May 14, 2010 7:21 am

Yes, sorry - it's the NHS that's being slow/difficult/expensive. The Bulgarians are fabby :)
There's no way the NHS is getting 50 squids from me for my own records. They can keep them as I no longer need them.
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