Hi guys,
We are in Bulgaria right now- my wife was done 2 days ago and all is good-lots of small subtle changes but I'm sure more to come.
As far as travelling goes- we booked with delta and I asked them At the ticket counter for some wheelchair assistance at our stops and they set it up to have a wheelchair ready at every terminal on the way there(3 stops). It was all good but we found Paris to very disorganized handling a disabled person- other than that it was fine. One couple here used Air France from Montreal and they had nothing but grief bringing someone disabled in their own wheelchair.
My question to all the people who have been liberated is: are you staying on your MS medications? I'm refering to the betainferon and the pills for spasticity & fatique(amantadine & baclofen)?
Thanks,
Rick
CCSVI in Bulgaria
-
72DEMON416
- Getting to Know You...
- Posts: 14
- Joined: Thu May 06, 2010 2:00 pm
- Location: North Battleford, SK
- Contact:
assistance
Hi Taps, it does help and thank you for everyone, less than 2 weeks, cant wait
bill
bill
meds
Hi Rick, Im so glad your wife is doing well, what type of ms does she have. I have ppms and am on baclofen. do they tell you to go off your meds before liberation? We are flying austrian air so hopefulyy they will be good. We are only taking carryon so hopefully no trouble with luggage. Did anyone have trouble with their lugguage? Any suggestion Rick what to bring with us? We are flying into vienna and then to sofia.
Bill
Bill
-
72DEMON416
- Getting to Know You...
- Posts: 14
- Joined: Thu May 06, 2010 2:00 pm
- Location: North Battleford, SK
- Contact:
My wife has secondary progressive ms. Nobody had trouble with baggage as far as I know, and there was 3 other couples from Canada here with us. I don't think you'll have any troubles with trip. As far as what to bring? Face towels, soap for bathing, toilet paper, they don't have hospital gowns so bring your pajamas. There is a patient store on the 9'th floor where you can buy this stuff as well.
They did not ask my wife what meds she was on prior to the surgery nor tell her to stop taking anything before the procedure.
Take care & Good luck!
They did not ask my wife what meds she was on prior to the surgery nor tell her to stop taking anything before the procedure.
Take care & Good luck!
Hey Guys,
I was liberated on the 7th of June. I, like Rick's wife have seen little subtle changes.
I'm from Montreal, also found Paris to be very disorganized, because of them we(hubby and I) missed our flight (AirFrance) by 5 minutes and were stuck in the airport for 8 hrs on the most uncomfortable chairs, at least my husband was, I was in my wheelchair(just as uncomfortable.) We were offered only a sandwich and a drink for the 8 hrs., very disappointed with the service in Paris.
As far as travelling with assistance (my husband) I got first class treatment. All you have to do is to mention at the ticket counter that you will be needing assistance and as Rick said "a wheelchair will waiting at every terminal."
Bill, I was looking forward to meeting you and Terry.
Good luck!
Good luck to everyone!
Anna
I was liberated on the 7th of June. I, like Rick's wife have seen little subtle changes.
I'm from Montreal, also found Paris to be very disorganized, because of them we(hubby and I) missed our flight (AirFrance) by 5 minutes and were stuck in the airport for 8 hrs on the most uncomfortable chairs, at least my husband was, I was in my wheelchair(just as uncomfortable.) We were offered only a sandwich and a drink for the 8 hrs., very disappointed with the service in Paris.
As far as travelling with assistance (my husband) I got first class treatment. All you have to do is to mention at the ticket counter that you will be needing assistance and as Rick said "a wheelchair will waiting at every terminal."
Bill, I was looking forward to meeting you and Terry.
Good luck!
Good luck to everyone!
Anna
72DEMON416 and AnnaP congratulations on your liberation hope you ae both going to get many more improvements in your conditions in the neer future.Have a safe trip home and with fewer hastles than when you went.
Did any of you go shopping while you were there. My kids are asking what I will bring them home any suggestions.
Animal66
Did any of you go shopping while you were there. My kids are asking what I will bring them home any suggestions.
Animal66
-
72DEMON416
- Getting to Know You...
- Posts: 14
- Joined: Thu May 06, 2010 2:00 pm
- Location: North Battleford, SK
- Contact:
We thought trying to find a place to shop as some peple had asked us to buy soiuvenirs but did not get out to look. However it did look like there was a mall almost next to the hospital & across from the hotel that everybody stays at(Granville/Greenvile?). I also thought I saw somewhere that there is a duty free shop at the airport(however I don't remember seeing one on arrival)
And we're off.
Hi, everyone. I've not posted for a while but have watched with joy, your updates and results.
We travel today, arrive in Sofia tomorrow. My wife checks in on Monday am, otherwise we are staying at the Hilton (I know, I know I should have stayed elsewhere but when this all started the information was scant.).
Good luck to anyone, and everyone.
Robob.
We travel today, arrive in Sofia tomorrow. My wife checks in on Monday am, otherwise we are staying at the Hilton (I know, I know I should have stayed elsewhere but when this all started the information was scant.).
Good luck to anyone, and everyone.
Robob.
I stayed at the Hilton...was very nice...try to stay in executive room...they have complimentary breakfast, etc, all day.
There's also a small mall 5 minutes away, at the rear of hotel.
Everyone speaks English well.
TV in room not so great, but they have pay per vue.
Movie theatre down block.
After hospital, I stayed at Greenville for one night
There's also a small mall 5 minutes away, at the rear of hotel.
Everyone speaks English well.
TV in room not so great, but they have pay per vue.
Movie theatre down block.
After hospital, I stayed at Greenville for one night
Anya,
My wife and I will arrive from Burlington, Ontario on the 19th. It'll be amazing to see somebody who just had the procedure and hear their stories firsthand so hopefully you will have fantastic results. I was diagnosed and treated for 18 years at London Health Sciences. Fingers crossed for you. See you in 3 weeks and 3 days.
Alan
My wife and I will arrive from Burlington, Ontario on the 19th. It'll be amazing to see somebody who just had the procedure and hear their stories firsthand so hopefully you will have fantastic results. I was diagnosed and treated for 18 years at London Health Sciences. Fingers crossed for you. See you in 3 weeks and 3 days.
Alan
CCSVI in Bulgaria
Hi there
Just a quickie to let you know I have had my operation already! It all went so fast but probably just as well or I would have been a nervous wreck by now.
Lisa from Geya Tours was waiting for us at the airport to take us to the hospital hotel with her driver in a little mini bus. She was lovely and took us to her office and took us through a few points. She had a letter ready for us fron the hospital co ordinator who came to us at our hotel room the next day and went over a few points. Her english was very good and she took us to see Dr Grozdinski where we filled out a few forms and then went in for our scans. I did cry I have to say when he showed me my stenosis, it's so emotional ' this is good news' he said to me. Very nice man. I had stenosis on my left jugular, right jugular and Asygos. We were then taken straight to my private hospital room and was prepared with a canular being put in my arm etc so from there it was real for me. It all happened so fast though that I hardly had time to catch my breath! I didnt realise it could be on the same day although Lisa did say I wasnt to eat when I got up so that should have given the clue. But it just didnt feel real to me. I then got taken for the op about 3 hours later. It took about 3 hours in the theatre but the surgeon turned up ½ hr late! I was made to lie on my back for about 8 hours as after it you can’t move your leg so my back is screaming out now! Anyway its very early days but right away I felt a difference in my hands and they heated up too. As the day progressed my feet started to show some colour too and heated up. I can def feel a difference in my throat which was something I wasn’t sure I had but it must have been starting as it feels completely clear now. I have also been complaining for a while I mean prob a couple of years of waking up with sore ears and neck at ear in the morn. When I get up though it goes away so I never ever reported it to the doc as it seemed minor. However when they were doing the angioplasty I could feel them in at that exact same bit on each side so it must have had something to do with it I think. And no sore ears this morning! Anyway baby steps! I can’t really test my walking as my back is too weak but my hubby thinks I am moving quicker so we will see.
Anyway so far so good and it has to be said I am a bit of a wimp but my back pain was far worse than the op! (for me anyway Dr Petrov says everyone feels it differently)
I didnt need stents but the right jugular was narrower than the rest but he did a few attempts with different sizes of balloon and was happy with the outcome and when we have our review we can look at it then to see if it is working without stents or if I need stents. The girl in the room next to me had a really narrow almost closed jug and she got stents so I guess they judge it with their experience and dont stent unless they have no other option.
The staff are lovely but I do find a definite language barrier with most nurses. My charge nurse last night had a good understanding of English but the nurses really didnt. It was all sign language and pointing at things but I got through it. The doctors speak quite good English though. The food so far has been edible but not something to write home about and last nights dinner when it arrived was stone cold once the dinner lady had done her rounds around the wards. It is early days but I'm feeling good about it all. Not sure if I will get out today or tomorrow and then we're heading to Greenville which is literally around the corner.
Take care
KoKo X
Just a quickie to let you know I have had my operation already! It all went so fast but probably just as well or I would have been a nervous wreck by now.
Lisa from Geya Tours was waiting for us at the airport to take us to the hospital hotel with her driver in a little mini bus. She was lovely and took us to her office and took us through a few points. She had a letter ready for us fron the hospital co ordinator who came to us at our hotel room the next day and went over a few points. Her english was very good and she took us to see Dr Grozdinski where we filled out a few forms and then went in for our scans. I did cry I have to say when he showed me my stenosis, it's so emotional ' this is good news' he said to me. Very nice man. I had stenosis on my left jugular, right jugular and Asygos. We were then taken straight to my private hospital room and was prepared with a canular being put in my arm etc so from there it was real for me. It all happened so fast though that I hardly had time to catch my breath! I didnt realise it could be on the same day although Lisa did say I wasnt to eat when I got up so that should have given the clue. But it just didnt feel real to me. I then got taken for the op about 3 hours later. It took about 3 hours in the theatre but the surgeon turned up ½ hr late! I was made to lie on my back for about 8 hours as after it you can’t move your leg so my back is screaming out now! Anyway its very early days but right away I felt a difference in my hands and they heated up too. As the day progressed my feet started to show some colour too and heated up. I can def feel a difference in my throat which was something I wasn’t sure I had but it must have been starting as it feels completely clear now. I have also been complaining for a while I mean prob a couple of years of waking up with sore ears and neck at ear in the morn. When I get up though it goes away so I never ever reported it to the doc as it seemed minor. However when they were doing the angioplasty I could feel them in at that exact same bit on each side so it must have had something to do with it I think. And no sore ears this morning! Anyway baby steps! I can’t really test my walking as my back is too weak but my hubby thinks I am moving quicker so we will see.
Anyway so far so good and it has to be said I am a bit of a wimp but my back pain was far worse than the op! (for me anyway Dr Petrov says everyone feels it differently)
I didnt need stents but the right jugular was narrower than the rest but he did a few attempts with different sizes of balloon and was happy with the outcome and when we have our review we can look at it then to see if it is working without stents or if I need stents. The girl in the room next to me had a really narrow almost closed jug and she got stents so I guess they judge it with their experience and dont stent unless they have no other option.
The staff are lovely but I do find a definite language barrier with most nurses. My charge nurse last night had a good understanding of English but the nurses really didnt. It was all sign language and pointing at things but I got through it. The doctors speak quite good English though. The food so far has been edible but not something to write home about and last nights dinner when it arrived was stone cold once the dinner lady had done her rounds around the wards. It is early days but I'm feeling good about it all. Not sure if I will get out today or tomorrow and then we're heading to Greenville which is literally around the corner.
Take care
KoKo X