CCSVI in Bulgaria

[BillTerry]

Hi, Im back from Bulgaria little over a week. I had 50 to 75 percent in left juglar and had it ballooned, my right, they had a problem ballooning, it was 75 percent or more so they stented, my agyzos was fine. Immediately i felt my hands and feet warm up and they have stayed that way. I could curl my toes for the first time in a long time. at the hospital i got out of my wheelchair and walked the railings in the hall back and forth 6 times with my wife holding my other hand, was picking up my feet. since i came back i sat out in the hot sun for 2 hours, usually 15 minutes would do it. I am now practicing with the walker 25 percent of the time and using my scooter the other. Hopefully soon i wont need the scooter. Its a slow process but I am very happy I went. The docs were great. The most amazing experience was meeting all the people from around the world. We took excursions and then went and stayed at this hotel for the last three days that was built around a ruins with some friends we met from Edmonton. I wish everyone the best and speedy recovery and safe trips. I will update more as time goes on.

Bill

[Algis]

That is great Bill; I'm so glad for you Keep us informed; sure !!

[Villagemaid]

Awesome Bill!!!! So happy for you and your family!!!

[Koko]

That's great news Bill! I wish you a speedy recovery!

Koko

[papa]

BillTerry,

You brought tears to our eyes just telling what a change it made in your abilities! That is great!!! We are hoping for good things too. My husband goes in Sept. He has spms. We hope if he can get rid of the fatique, balance problems and get some momentum he will walk again- That is his goal!!! We are very happy for you and may your progress continue!!

Papa

[ales]

Sorry everyone for the delay in this post. The internet is sketchy here. Anyways, I had the procedure this past Wednesday. To date I can walk further, have better balance and feeling in both hands and feet and am almost pain free. I can walk next to people and talk to them while looking them in the eye. I can walk and talk without thinking about the pain constantly screaming in my legs. The doctors say that it'll take some time but things should gradually get better as the system continues to flush the iron. I was 90% blocked in the left jug, 70%in the right and 80% in the Azygos. We are leaving Bulgaria tomorrow and will do an after video when we get home but can honestly say that this trip was well worth it and the people here at Tokuda are top notch. Results vary from person to person but EVERYONE is having some positive results. If we remember Zamboni was doing this only for RRMS but most of the people I have seen here are SPMS or PPMS and have walkers or are in wheelchairs. This does work and I wish the absolute best for anyone and everyone that gets it. Never in my 18 years have I ever had a day when I awoke better than when I went to sleep the night before. Not only is that the case these days but there is hope for more progress and lots of room to dream again. We all know how difficult it is to deal with the despair. Now there is sun on the horizon for the first time in a long, long time. Good luck and my fingers are crossed for you all.

[LivabirdsHubbie]

Thanks for that ales, that is fantastic news. So glad for you.
It is very encouraging as Liva is going for a second treatment in October, we are hoping for some positive results that will last this time, she has PPMS so are fingers are crossed.
May the improvements continue with you and everyone else

All the best

[Anya]

Hi Ales,

That is great news that you experienced such amazing results. It should only continue to get better every week. Did they use any stents? Albert is getting better too. Probably in a few weeks we will write another update. Say hi to your wife. All the best.

[papa]

hey ales,

That is so exciting to hear!!! We have another month or so before we go. We can hardly wait. This is great news for ms'ers who have had no hope for so long. We will be looking for your "movie"!!

Papa

[ales]

So we flew home yesterday and after a long flight from Sofia back to Bulgaria we had to walk the dread 3,000, 000 miles to go through customs and retrieve our luggage. We waited for everyone else to get off the plane first and then began what I knew was going to be a long walk. I look for the golf cart for assistance and would've gladly taken it but there was none to be found. My wife asked if I wanted a wheelchair but I am far too stubborn for that, so I did the best I could and walked at my slow choppy pace. When we got to the electric sidewalks I even walked while on those instead of just standing and letting them do the work. We had a short wait at customs then on to get our bags. Finally out to the awaiting crowds. Our girls came bolting to us and were very excited to see how Daddy was doing. Well I UNBELIEVABLY lifted my almost 11 year old daughter and held her with fully extended arms and didn't lose my balance. This after the very long walk. You know what. I did not stop one time to rest my legs, I had absolutely zero pain and for the first time in many years I actually walked with my family next to me, looking them in the eye and listening to what they were saying instead of asking them to walk to the side and wait until I could sit down because my legs hurt and I needed to concentrate on not missing a step. I am not 100%. I may only be back 10% but I am virtually pain free, have more strength and stamina so those alone were worth the money and the trip. For any of us to regain any small piece of our lives back is big to us but to our families as well. Make no mistake... our loved ones live this right along with us. I listened to our 11 and 14 years old daughters last night!!!! After 13 hours of travel. It was 4 a.m. for us when we landed in Toronto. I was exhausted. I had to walk then long hallways to baggage claim and customs and then into the waiting arms of our daughters. To say that they had a whole weeks worth of stories to tell is an understatement. They wanted to tell us every detail of everything that they had both done from the minute we left. At one point my mother looked at me and smiled. My parents had taken the girls for us during our absence and knew precisely how excited our girls were that we were coming home. My youngest said to me..." Daddy this must've really worked because you would"ve needed to stop several times to rest and you would've told us to stop talking so much." That hurt but made me realize what a grumpy person I had become. How this MS had made me angry and bitter and how my own flesh and blood was seeing it. Like I said when I posted my video, I only wanted to be a better Dad and husband.. and thank you, thank you, thank you to Dr. Zamboni, all the people at Tokuda hospital in Bulgaria, Jimmy and Wes and Michelle, and Tessa and Verna, and Gary and Judy and Rudy and Jutta and Jen and Perry and Anya and Albert and Oivan and Tim and my beautiful wife Lise and children Emma and Sofie and absolutely everyone that has helped along this journey. It has been HELL. I know that I don't have it as bad as many others but for me it has been trying too. I can only hope that all of you have positive results. Now we must begin our next leg of this journey and work towards follow-up treatments , hopefully with the ONLY Canadian Zamboni trained doctor in this CCSVI procedure, Dr. Sandy MacDonald in Barrie , Ontario. I have been on Betaseron for 14 years now. I have not taken a shot since July 17th. That means that I have now missed 5 consecutive injections and I promise you all that I have not missed the "joy of puncturing myself once. This has been a long post and IF you made it through I thank you for hanging in ther. I am extremely pleased with the little bit I have back. I still limp. I still have some drop foot and I still have some vertigo and tingling in my hands and feet but I also have hope and my friends THAT IS FREAKIN HUGE!!!!!!!! Until the next time.

[ales]

Sorry I meant to say from Sofia back to Toronto.

[ErikaSlovakia]

Wow, what a story!
My day will be nicer
Erika

[devine]

Hi Ales, I am so happy to hear the improvements. Just one word of advise.. Don`t forget to rest some... as the improvements will take a little longer if you don`t... All what I can see from this, is you getting better and better as the days continue.. Yay to no more injections..! Good luck Ales and I hope it`s not the last we will hear from you with much more success to come...

take care,
Donna

[papa]

hi ales,

Wow, what a story all right! Seems to me you like to talk as much as your daughters HA HA!! Thanks for sharing that with us! You made our day!! Wish all the ms'ers could be standing on the sidelines witnessing this, but in one way we are. Its like watching a good scoccer game or baseball which ever you like. I feel like we are a big fan base along with our families, like you said they too suffer along with us, that are cheering each other on!!! And we are winning the game!!

Keep us posted
Papa

[MHP]

Dear friends,

I am about to sign for the procedure to be done in Bulgaria. Many of you have already been through it and I would really appreciate if you could answer to my questions from you experience. It will be really appreciated in order to make up my mind completely.

1- was the medication connected to the treatment included in the price? Which type of medication was it? What was the time scale - short, medium or long term medication?

2-did any of you have a re-stenosis. What was the protocol? Price?

3-did any of you have the stented veins totally close after the procedure: Who fixed the problem? Price?

4- how long did you take the anticoagulants for?

5- Do they have different teams or only one
team? is it always the same person performing the treatment?


7-were the forms for consent written in English?

8-was any relative allowed inside the operating theater and during hospitalization?

thank you so much for your time !!!

best regards and keep improving and smiling!

maria