CCSVI in Bulgaria

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

Daisy3 wrote:
Villagemaid wrote:Thanks!

Wow...travel arrangements.....
Tokuda hospital? where is that?
We have been offered a space in July by Dr Petrov.

Bit nervous as we don't know what to expect..it might be nothing, it might be something..
Also, to the guys who have already been, how was the healthcare teams english or french? What if we cannot communicate?!!
We are going end of July (27th) . I suggest you contact Geya Tours to assist in arrangements.
Good luck and perhaps we'll see you there?
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pinksapphire
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Post by pinksapphire »

RobSandra wrote:GREAT BLOG -thanks ever so much for sharing!!!
You're Welcome! :D
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colapesce
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Post by colapesce »

ven wrote:
colapesce wrote:hi ven
re Detralex - it should be written on your epicrisis that they give to you before leaving Tokuda. I take it twice per day for 6 months

On MINE it looks like this
Plavix 75 mg / дневно за 3 месеца.
Аspirin 100 mg / дневно за 6 месеца
Daflon 2 х 1 за 6 месеца

Plavix 75mg daily for 3 months
Aspirin 100mg daily for 6 months
Daflon (Detralex) 1 tablet, twice per day, for 6 months

Check yours carefully though as I don't know whether we all get prescribed the same thing :)
thanks a lot have to take them the same as u..tks for your kindness help..
are you going again in 6months pls?
tks a lot
hi ven,
You're welcome! Yes, I go back in November. We might see each other there :)
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Villagemaid
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Post by Villagemaid »

Wow. Okay....so now that I have an official date (SEPTEMBER 8th).....it is really scary-exciting.......yay!!!

Wondering if someone could help answer these questions:

1. Is it better to book a flight through a travel agency or through Geya Tours?

2. Do you recommend staying the entire time at the Hospital Hostel or a few days at a hotel?

3. Any other advice?
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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ven
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Post by ven »

colapesce wrote:
ven wrote:
colapesce wrote:hi ven
re Detralex - it should be written on your epicrisis that they give to you before leaving Tokuda. I take it twice per day for 6 months

On MINE it looks like this
Plavix 75 mg / дневно за 3 месеца.
Аspirin 100 mg / дневно за 6 месеца
Daflon 2 х 1 за 6 месеца

Plavix 75mg daily for 3 months
Aspirin 100mg daily for 6 months
Daflon (Detralex) 1 tablet, twice per day, for 6 months

Check yours carefully though as I don't know whether we all get prescribed the same thing :)
thanks a lot have to take them the same as u..tks for your kindness help..
are you going again in 6months pls?
tks a lot
hi ven,
You're welcome! Yes, I go back in November. We might see each other there :)
hey again :)
so is the cost 5000euro again when we are going cause i forgot to ask lol
tks for your help yes real wish we be togther :)
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alanya
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Sofia, Bulgaria CCSVI

Post by alanya »

Hi all,

I have an appointment for Sofia on June 24 for Liberation treatment. My hospital appointment is for the 24th at 11am, when should I plan to be in bulgaria,the 23rd?

Any info would be greatly appreciated.

Thanks,
alanya
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costumenastional
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Post by costumenastional »

Alanya, take some time to read through this thread. It s all in here. If you are left with any specific questions shoot :)
Good luck with your liberation. You will be in good hands.
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sofia
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Post by sofia »

The doc that discharged me said he didn't know how much it would be the second time, but he said it would be cheaper then. And that they will do venogram again as well, ballooning propably if needed.
I am going back as well, restenosis is a worry, so better to be on safe side.
How are you guys feeling now a little time after procedure. I am still tiered, but not as much, and since I got home my dizzies have gone 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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costumenastional
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Post by costumenastional »

Sofia, glad u r feeling better friend.
For me, 3 weeks post op and unfortunately, no improvements worth to mention.
I feel that some of my nerve damage is permanent and wont go away but i really wish for my poisoned brain feeling to subside so i can keep hoping. Some wishfull thinking would be that it took many years for my brain to start feeling like this and it wont be easy to get rid of toxic iron or whatever in a month or so. Nothing related to the AWAKENING feeling some other fellow patients experience though. Not in any case.

Just a notice: there are some NEW symptoms. Nothing alarming but the procedure is definitely the cause. There are some very mild spasms in both my knees every now and then and i a couple of other places which i dont remember now. They are too rare to remember.

I take it as that it has SOMETHING to do with altered blood drainage from the cervical spinal cord post op. My 2 lesions are at C2 and C4-5 and maybe change in the flow of jugs interfere with already damaged nerves there.
Well, it s this or new lesion formation right after liberation which would be a diabolic coinsidence.
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Algis
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Post by Algis »

Opinion? Great Anna!! Gogogogogo!!! Best of luck!!
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RobSandra
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Post by RobSandra »

Villagemaid wrote:Wow. Okay....so now that I have an official date (SEPTEMBER 8th).....it is really scary-exciting.......yay!!!

Wondering if someone could help answer these questions:

1. Is it better to book a flight through a travel agency or through Geya Tours?

2. Do you recommend staying the entire time at the Hospital Hostel or a few days at a hotel?

3. Any other advice?
1.We booked our own tickets through online agent and shopped best price from Canada to Sofia. Once we had tickets we notified Geya Tours and Prof. G.
2. We are scheduled for 27th July but (anyone who travels knows how messed up air travel can get) we depart the 24th and arrive 25th to be safe. They wanted us there the 26th. We (patient and spouse) will stay in hospital hotel until procedure and recommended hospital time is complete then we'll go spend a few days at the Greenville Hospital across the street to rest/relax just in case before making long trek back home again.
3. Get in contact with Geya tours and ask them what they offer for options?

Good luck.
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Villagemaid
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Post by Villagemaid »

Thanks Rob-Sandra......

I appreciate the info. I am going to get a travel agent to book flights. I most likely will stay at the hotel after the procedure as well.

I'm not sure who is going to join me or not yet....lol...my husband might stay home and look after our 10 year old boy if I can find a friend to go with me. My mom cannot travel (heart condition).....and to be honest, I really really don't think my hubby could "sit still" for that long of a flight....ha ha ha.....honestly, I think the trip would be worse for him than for me! :roll:

Keep us posted!!
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Koko
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Post by Koko »

Hi Village maid

Thats fab you've got a date now you must be excited!! The advice Rob Sandra gave is similar to what I plan. I leave 23 June and have an over night stay at London and travel to Sofia 24th June for hospital visit 25th June. It will be my husband and I travelling and we are staying at the hospital hotel and we are staying at Greenville for the last couple of days to chill out. I'm not sure if this is a good idea or not or if it would be better to head home as I dont know how I will feel if you know what a mean. The good news I guess is that we will be right next to the hospital if anything should go pear shaped! Have you looked at the Greenville hotel on the internet it looks brilliant!

Koko:lol:
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Villagemaid
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Post by Villagemaid »

Koko: Where in Scotlans are you from??.....I've been there before (ex-highland dancer)......want to go back for a visit...NEED to go...lol...

I think I will do the same as you and rob-sandra.......give enough time to allow yourself to take it easy.

*cheers!
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Daisy3
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Post by Daisy3 »

Koko wrote:Hi Village maid

Thats fab you've got a date now you must be excited!! The advice Rob Sandra gave is similar to what I plan. I leave 23 June and have an over night stay at London and travel to Sofia 24th June for hospital visit 25th June. It will be my husband and I travelling and we are staying at the hospital hotel and we are staying at Greenville for the last couple of days to chill out. I'm not sure if this is a good idea or not or if it would be better to head home as I dont know how I will feel if you know what a mean. The good news I guess is that we will be right next to the hospital if anything should go pear shaped! Have you looked at the Greenville hotel on the internet it looks brilliant!

Koko:lol:
Will you not be going to the Essential Health Clinic?
We have semi booked an appointment with these guys but are seriously thinking about Scotland. The ease of language and travel etc. I am worried about compromising on experience, but were not likely to see these guys until they have had very good training and some experience under their belt.
What do you think?
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