CCSVI in Bulgaria
Congratulation AK and thanks for the update! Even though I've already done it I still want to hear from others
Last edited by colapesce on Wed Feb 23, 2011 4:13 pm, edited 1 time in total.
Sophie..keep up the progress..good to know..keep that tush warm
AK..great news....feel better soon...nive you have company there...thanks for the info..
Koko..I'm new here too...going june 11...I read that Zamboni and other doctors have advised to stay on MS meds after...they said too early to stop...
caraboo..when are you going to be there?
anybody have any comments regarding the hotel rooms in the hospital? Are we better off staying there or in a hotel?
AK..great news....feel better soon...nive you have company there...thanks for the info..
Koko..I'm new here too...going june 11...I read that Zamboni and other doctors have advised to stay on MS meds after...they said too early to stop...
caraboo..when are you going to be there?
anybody have any comments regarding the hotel rooms in the hospital? Are we better off staying there or in a hotel?
anxious
we are booked and ready for July and travel from Canada. We also await word on the the rooms while in tokudo. My husband appears to be staying in my hospital room with me?
Appreciate all the input on the procedure and what to expect. Thanks all!
Appreciate all the input on the procedure and what to expect. Thanks all!
hi burg, the hotel rooms at the hospital are like a room on the ward. You just don't have the docs and nurses' station there. There's a telly and wifi
They're located on the 5th floor and the cardiology ward is on the 6th.
There's a proper hotel across the road. I think it's called Greenville...?
There'll be a proper price difference too, I imagine
They're located on the 5th floor and the cardiology ward is on the 6th.
There's a proper hotel across the road. I think it's called Greenville...?
There'll be a proper price difference too, I imagine
I'm still feeling good. My legs are defenetly stronger. I am still suffering for vertigo, it has not improved.
If you choose to have treatment done in Bulgaria it is part of a clinical trial. Just as the establishment is reconmending for those uf us having ccsvi treatment.
Professor grodsinsky is connected to the university, and dr petrov that is preforming the surgery is a phd.
If you choose to have treatment done in Bulgaria it is part of a clinical trial. Just as the establishment is reconmending for those uf us having ccsvi treatment.
Professor grodsinsky is connected to the university, and dr petrov that is preforming the surgery is a phd.
<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>
Sophia...keep it up..AK..rest and recuperate...
Anna.. I'm planning on being there on the 10th..gotta make decision on where to stay...
Colapesce..thanks for the info...when was your procedure?..Can you give a quick summary on the before and after..then and now? or..What page is it on??
Anna.. I'm planning on being there on the 10th..gotta make decision on where to stay...
Colapesce..thanks for the info...when was your procedure?..Can you give a quick summary on the before and after..then and now? or..What page is it on??
Last edited by burg on Sun May 23, 2010 6:57 am, edited 1 time in total.
hi burg,
I was in with Costume and Chris a couple of weeks ago.
Have posted some improvements on here, probably a few pages back by now.
Quick version...
walked like I was drunk a lot of the time, tingles and numbness in all limbs - some worse than other - but could still walk, a lot of pain, a lot of dizziness, ON (left side), cog fog, terrible memory, fatigue
Now = everything listed above is much improved, some more than others and some make a temporary return and then clear up again.
Had ballooning - no stents. Was blocked in all 3 veins.
Today I'm tired but this is due to lack of sleep last night and sitting at this computer for far too long
We've all become pretty close on here Maybe one day we should all meet up in Bulgaria!
I was in with Costume and Chris a couple of weeks ago.
Have posted some improvements on here, probably a few pages back by now.
Quick version...
walked like I was drunk a lot of the time, tingles and numbness in all limbs - some worse than other - but could still walk, a lot of pain, a lot of dizziness, ON (left side), cog fog, terrible memory, fatigue
Now = everything listed above is much improved, some more than others and some make a temporary return and then clear up again.
Had ballooning - no stents. Was blocked in all 3 veins.
Today I'm tired but this is due to lack of sleep last night and sitting at this computer for far too long
We've all become pretty close on here
Maybe one day we should all meet up in Bulgaria!-
costumenastional
- Family Elder
- Posts: 743
- Joined: Sat Jan 31, 2009 3:00 pm
- Location: Greece
- Contact:
-
costumenastional
- Family Elder
- Posts: 743
- Joined: Sat Jan 31, 2009 3:00 pm
- Location: Greece
- Contact:
-
pinksapphire
- Family Member
- Posts: 76
- Joined: Wed Feb 03, 2010 3:00 pm
- Contact:
@ Ak
I feel the same way about the hospital and staff. We are very fortunate to have them ready and willing to make the change we so desperately need!!!. I didn't need stents either, so here's hoping that in the next 6 months they stay open for you and I and of course everyone who had it done. I had mine done on April 30th.....so time will tell. Keep your fingers crossed.
I am pleased to see your story. Another Success!!
I feel the same way about the hospital and staff. We are very fortunate to have them ready and willing to make the change we so desperately need!!!. I didn't need stents either, so here's hoping that in the next 6 months they stay open for you and I and of course everyone who had it done. I had mine done on April 30th.....so time will tell. Keep your fingers crossed.
I am pleased to see your story. Another Success!!
Day One After Liberation
Thank you to all of you that sent good wishes and congratulations after my post yesterday.
In my right foot the swelling isn't completly gone, but almost. The color in both my feet is good and I can start to see the veins on the top of my right foot and the veins on my left foot really stand out now. For the first time in quite a few weeks my legs did not sweat under the blankets when I was sleeping. They always felt cold during the day and today they just felt normal. At times they even felt warm this morning but they did not sweat. My right side which was so tight before that the bottom of my rib cage was pulled down on the inside of the top of my hip bone was actually soft this morning and there was almost a finger width between the bottom of the rib cage and the top of the hip bone this morning. That has tightened up a bit tonight. For now I am still taking the same meds for MS and expect to need them for a while yet. I was taking 20 mg of baclofen and two 500 tylenol every 4 hours to try to control the muscle spasms and tightness. Last night I started taking LDN again also but don't expect to feel the effects of that for a day or two yet. Today I took 20 mgs of baclofen every 5 hours and have not taken any tylenol since last night. Will probably take some at bed time. Overall I have just been more comfortable and had way less muscle spasms in my legs today. Usually got them if I sat up to long and typed on this computor. I actually laid flat on my back today for about 10 minutes after not taking any baclofen for 5 hours and did not have any leg spasms in my right leg. Just being more comfortable is a win.
I was told that because they did not see any lesions in the jugular veins and they had good elasticity that they felt I had a less than 50% chance that I would re-stenos and therefore did not use stents. They also told me that the Azygos vein rarely re-stenoses. Like you Pink Saphire I will be keeping my fingers crossed and hoping that I don't re-stenose.
We will see how things go here and over the next few months and I will consider seriously about coming back for the check up in six months. We'll see what they recomend. I'm not very confident that there will be any follow up ultra sound available to get checked out back in Canada and I'm not confident that they know what they are doing there anyway. We have a wonderful medicare system that if FREE with absolutely no user fees. I guess you get what you pay for!
For anyone wondering about the hospital hotel. It is clean, comfortable and spacious. It is acutally on the 5th floor of the hospital. Since I'm on the 6th floor Christine has found it quite convenient to be so close by and not have to take cabs to get here.
In my right foot the swelling isn't completly gone, but almost. The color in both my feet is good and I can start to see the veins on the top of my right foot and the veins on my left foot really stand out now. For the first time in quite a few weeks my legs did not sweat under the blankets when I was sleeping. They always felt cold during the day and today they just felt normal. At times they even felt warm this morning but they did not sweat. My right side which was so tight before that the bottom of my rib cage was pulled down on the inside of the top of my hip bone was actually soft this morning and there was almost a finger width between the bottom of the rib cage and the top of the hip bone this morning. That has tightened up a bit tonight. For now I am still taking the same meds for MS and expect to need them for a while yet. I was taking 20 mg of baclofen and two 500 tylenol every 4 hours to try to control the muscle spasms and tightness. Last night I started taking LDN again also but don't expect to feel the effects of that for a day or two yet. Today I took 20 mgs of baclofen every 5 hours and have not taken any tylenol since last night. Will probably take some at bed time. Overall I have just been more comfortable and had way less muscle spasms in my legs today. Usually got them if I sat up to long and typed on this computor. I actually laid flat on my back today for about 10 minutes after not taking any baclofen for 5 hours and did not have any leg spasms in my right leg. Just being more comfortable is a win.
I was told that because they did not see any lesions in the jugular veins and they had good elasticity that they felt I had a less than 50% chance that I would re-stenos and therefore did not use stents. They also told me that the Azygos vein rarely re-stenoses. Like you Pink Saphire I will be keeping my fingers crossed and hoping that I don't re-stenose.
We will see how things go here and over the next few months and I will consider seriously about coming back for the check up in six months. We'll see what they recomend. I'm not very confident that there will be any follow up ultra sound available to get checked out back in Canada and I'm not confident that they know what they are doing there anyway. We have a wonderful medicare system that if FREE with absolutely no user fees. I guess you get what you pay for!
For anyone wondering about the hospital hotel. It is clean, comfortable and spacious. It is acutally on the 5th floor of the hospital. Since I'm on the 6th floor Christine has found it quite convenient to be so close by and not have to take cabs to get here.