CCSVI in Bulgaria

Taps · Post by **Taps** » Wed May 19, 2010 4:00 am

RobSandra wrote:Taps:

We are scheduled for July 27th. We will be there the 25th (better than being held up and missing our appointment). You?

See you on the 27th! I arrive on the 26th...

Counting down to the minute these days...

BTW all others: Thanks again to everyone posting feedback on his/her procedures...

Taps

ales · Post by **ales** » Wed May 19, 2010 4:44 am

I'm sure we will RobSandra. We leave the 26th so you will see the results first hand. Can't wait!!!!!!!!!!!!

ven · Post by **ven** » Wed May 19, 2010 8:20 am

hello everyone am in sofia did the ccsvi on monday am doing better no back pain at all it took me 1hour and half no stents..my feet colour is back to normal and going to the loo every hour is getting better aswell..
today i walk a bit but for me is good..everthing bit by bit they gave me pills for month and others for 6months and i have to come again if i want between 3 to 6months time..so am going to see how i feel and decide if i come back or not............good luck to all

ven · Post by **ven** » Wed May 19, 2010 9:03 am

burg wrote:AK...Keep up with all the improvements!!
Sophie; How you doing..hope ok!! going home soon?

Someone emailed me that they checked into Tokuda in the early morning, and waited a whole day to start the proceedure. Is that true?
I don't think I could handle the anxiety...ready to have some of that vodka already.

hello i came in on monday at 9am at 930am d doctor saw me and told me i need the procdere i was due for tuesday but he called me monday at 3pm so i didnt wait nothing and the prof gron and his team are very nice know one here know good english but its ok they are nice ppl...if u need to knoe something else just send me here or private email
tks

msjen · Post by **msjen** » Wed May 19, 2010 1:35 pm

I am scheduled for July 5th and can't wait to be there! My sister and I will arrive from the US on the 4th and we're staying at the hosptial. I have been feeling terribly latelty by I think Ativan seems to help with my dizziness. I can't wait to see and meet everyone who will be there at that time. What a journey!

devine · Post by **devine** » Wed May 19, 2010 3:36 pm

HI, I'm new at this and not really too sure if this is going to work or what site this might fall on..My date is for June 1st. Didn't recieve any type of confirmation as to what time I'm scheduled for my tests... I will be staying at the hospital during my stay. I really don't know what or how i'm feeling at this point.. I know I was anxious from the get go.. but now that the day is getting closer and closer and hearing about the BP problems scares me... I've tried getting back to my positive thinking and just hoping for the best outcome.... will be going with my spouse and before arriving in Bulgaria we decided to stay a couple of days in Paris to visit and maybe change a bit of the stress. Been diagnosed back in 2006 while on vacation with family in Florida lost partial eye sight, it took several months with me hounding the dr's to pass scans and all.. finally after 3 months I was scheduled for a MRI in which I got confirmation of MS. If you saw me by far you would never guess I had it. But trust me I feel it everyday. The numbness , electric shocks in the brain, my feet and hands freezing, and the list can go on.. As for balance i'm doing fine as for walking i'm doing fine but the duration part is not there and when simply doing the 30 minutes of fitness Wii step... I'm in pain the next days and can't bend on my knees without pain and notice that I have a leg that won't lift as high when walking... but besides that I consider myself healthy... Looking for treatment ASAP so the damage won't be so bad. With two young kids I want to be around for a long time and enjoy life with them and not have them worring about me. (even though I haven't told them about my sickness didn't want them worrying since nothing is apparent right now in there eyes) fingers are crossed with the volcano situation and enjoying everybody comments which is helping me for the positive thinking.. Thanks to all for your comments and will continue to read them.. Once I pass I will be updating you guys with some results.. btw really anxious to find out since I did forget to mention that I had a doppler done at westmount square in Montreal (in which there no longer performing it but did get the chance to do one back in march) was confirmed that I had no blockage in my junglars... in which to my surprise since I always feel like I have something in my throat thought it was my thyroid gland but they told me that's fine. So my tests in Bulgaria should be pretty interesting as to what they might find.

Vhoenecke · Post by **Vhoenecke** » Wed May 19, 2010 4:58 pm

Devine,

I had the same feeling of something in my throat and it was gone the day I was liberated in Poland 3 weeks ago. I am sorry to say but I don't really trust the results from Westmount. I have faith that you have something wrong and liberation will help that feeling in your throat. All the best to you in your trip and keep us posted.

Val

devine · Post by **devine** » Wed May 19, 2010 6:17 pm

thank you Vhoenecke, I do agree with you as per not trusting them. Since I experienced 3 months of being persistant and going back to several dr's to find out I had MS to begin with when they kept on telling me I had nothing also cat scans showed I had nothing but kept on fighting until they did find something. Nobody knows our body better than ourselves... This is why I didn't stop my jouney with the results from Westmount and i'm sure they will find something. Thank you, Thank you Thank you as i'm keeping the faith.

Koko · Post by **Koko** » Thu May 20, 2010 5:55 am

Hi there folks.

VEN you sound like you are doing really good well done! No back pain sounds absolutely wonderful. I pray I get the same luck!!

DEVINE keep positive. You've got nothing to lose and everything to gain. I know what you mean by walking okay etc and that only you notice things and that it's not noticeable yet for others. I was the same a few years ago but its one of those things that creeps upon you I think. My walking not so good now as I have a foot drop to the left and my back is a persistent problem. However I love life and if I was to wait until our government got their finger out I would lose another 10 yrs which I'm not willing to do so i go to Bulgaria End June. I sometimes feel like I have something in the throat too. In fact not even that more something to do with the swallowing part but its not all the time and sometimes I think it's my imagination. I will def know if there is a change to me though. I wish you all the best of luck and keep everything crossed for luck. Remember PMA Positive mental attitude!

Cheers

Koko X

RobSandra · Post by **RobSandra** » Thu May 20, 2010 9:37 am

Taps / Ales
We will see you in Sofia in July......if that day ever gets here as it seems to be taking forever when your so anxious to go.

ales · Post by **ales** » Thu May 20, 2010 11:25 am

I hear ya but from what everyone is saying the worth out weighs the wait. Until then it's summertime so head to a pool and pour a strong one. I spoke with pinksapphire this morning and from what she has to say, I am ready and if it takes a few weeks... I guess that's what it'll take. Patience and we will all walk together on our respective governments and prove those jerks wrong. If it wasn't for the payoffs and kickbacks we would've had this done long ago. Be strong.

ak · Post by ak » Thu May 20, 2010 1:07 pm

HOME AGAIN

May 20, 2010

Hello Everyone.

We arrived home yesterday at around 6:00PM. It was a long trip but a good trip as we managed to make all of our connections successfully. The airline staff for Air Canada and Air Lufthansa were great. They were very helpful and gave us excellant service.

On the way home I actually sat in the seat like a normal person for the first time in a long time. I still had some discomfort in my back but nothing like the amount of discomfort that I had in my back on the trip to Bulgaria. I still took Baclofen regularily 20 mg every 4 hours but only took one 500 mg tylenol every 4 hours instead of two. I still have some muscle spasms but not as many as before and they are by far less severe when they do occur. I can definetly sit or lie down in one position for a longer period of time with less stiffness and muscle tightness when I get up. Other wise all other improvements are the same as before. My legs still sweat a bit at night but not as much as before and not every night. I have also noticed that I don't swallow wrong very often anymore and don't feel like I have small pieces of food caught in my throat. In fact on the day of the venogram & ballooning when I was able to eat, I ate my meal chewed and swallowed without any problem without lifting my head off of the pillow and not one bit of food got caught at the back of my throat or went down the wrong way.

Now that I am home I am planning to make a copy of the CD that Dr Petrov gave me that has pictures of my veins before and after the venogram. I plan to give a copy to my family doctor, my neurologist and send a copy with a letter to the Saskatchewan Minister of Health and the Federal Minister of Health. Maybe if enough of us send the information and a copy of our results they will finally believe us and allow the treatments to be provided to all MS patients here at home since not everyone can afford to travel to Bulgaria or Poland.

Our trip was good, the results were better but THERES NO PLACE LIKE HOME.

Regards

AK

devine · Post by **devine** » Thu May 20, 2010 4:52 pm

Thank you Koko : ) I will be keeping in my mind "PMA Positive mental attitude! " during this journey and for the rest of my life.. Like you I love, love, love life ! Threw it's thick and thin it's the best in some wierd way. Everything that I can cross will be for all of us... but I do believe that it's something bigger than the crossing that's helping us. I will be thinking and sending positive vibes your way and for everybody elses turn also... we all deserve to live a happy healthy life.

cheers,
Donna

sofia · Post by **sofia** » Fri May 21, 2010 2:35 am

I am back home as well now. Long and tiering journey, even if it went without problems. I am the same as devine, nobody can tell my sufferings by looking at me, my balance and my walking is all right, but if I over do it, I get even more dizzy and sick feeling then I normally do, and also my legs are weaker, then they used to be.
First thing I notced after the procedure was that leg pain went away, and that my legs did not feel as weak any more. The dizzyness persisted, fro a whole week after the procedure, but now I have had 1 and a half day without the vertigo, even if I have been quite busy. I had days inbetween whereI was not feeling as dizzy before, so I can't put it down to the procedure just yet, but I'm keeping positive abpout it, and if it it is defenetly because of the operation, as I have been suffering with it for more then a year now.
To ven and ak, I have been telling all my friends and family about your results as well mine. It was great meeting you all. At least we all feel it was defenetly worth it. Even if it is great feeling better, just stopping the prgression is kind of great too. Time will defenetly tell

RobSandra · Post by **RobSandra** » Fri May 21, 2010 8:07 am

ales wrote:I hear ya but from what everyone is saying the worth out weighs the wait. Until then it's summertime so head to a pool and pour a strong one. I spoke with pinksapphire this morning and from what she has to say, I am ready and if it takes a few weeks... I guess that's what it'll take. Patience and we will all walk together on our respective governments and prove those jerks wrong. If it wasn't for the payoffs and kickbacks we would've had this done long ago. Be strong.

You are 100 per cent right as far as we are concerned! Unbelieveable that we need travel to Bulgaria for this (thankful that we have that option however). Canadian Health System is really dragging behind on this.

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CCSVI in Bulgaria

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