CCSVI in Bulgaria

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Leaning towards going back myself...

Postby Taps » Wed Aug 18, 2010 4:51 am

colapesce wrote:re. cds... mine won't work on a mac but does work on a pc. I don't have a pc though! I, too, will be back in October for follow-up/second attempt at procedure.


Hi Colapesce,

It's been 20 days since procedure for me...

Still a bit of a roller coaster in terms of good days and bad. The bad days arent nearly what they were pre-angio by any stretch of the imagination.

I'm highly considering going back to get re-balooned/stent for the left side that closed up literally the morning after procedure in late July.

Mornings are tough but as the day progresses, things get way better.
Last edited by Taps on Wed Aug 18, 2010 11:31 am, edited 1 time in total.
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Re: Hi SamSam

Postby SamSam » Wed Aug 18, 2010 11:30 am

"Hi SamSam, will be great meeting up with you.
The first month Liva had good results, the normal warm feet etc.. no pain, but over time it came back, we think there are a couple of reasons for this, possible restenosis of the right jugular, maybe the stent in the left is blocked, but we think more likely it is the azygos vein which poland did not do anything with. With PPMS we have read that it is generally the azygos which is affected the most. Prof Gosdinski understands this and will pay close attention to this, so fingers crossed, getting close now
All the best and we can keep chatting until the 6th when we can meet in person"


Dear LivaBirds -- Thank you for sharing this information. I am thinking strong thoughts that the azygos vein is going to be the winner. Think think think. :)
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thanks

Postby LivabirdsHubbie » Wed Aug 18, 2010 11:33 am

Yes SamSam, the mind is a powerful tool and must stay positive.
Where abouts are you from.
We are in Northampton England but are originally from Ottawa Canada..
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How to Pay?

Postby SamSam » Wed Aug 18, 2010 1:04 pm

Dear all,

How have people paid for the procedure?

In a very early blog post, someone said they paid "cash"... have people used credit cards? is it cash only? all comments appreciated.

Thank you...
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Re: How to Pay?

Postby devine » Wed Aug 18, 2010 1:53 pm

SamSam wrote:Dear all,

How have people paid for the procedure?

In a very early blog post, someone said they paid "cash"... have people used credit cards? is it cash only? all comments appreciated.

Thank you...



Hi SamSam,

I paid with my credit card as I wanted to be protected for fraud. They will bill you the day you leave the hospital. I do believe that traveler cheques would be fine also... Note that if you do pay with credit card you want to advise them before leaving since your in a different country and the amount is quite high they might not pass it so to advoid any hassels down there and to makes it easier not having to attempt several calls to the credit card company.


Good luck,
Donna
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Re: How to Pay?

Postby ven » Wed Aug 18, 2010 9:53 pm

SamSam wrote:Dear all,

How have people paid for the procedure?

In a very early blog post, someone said they paid "cash"... have people used credit cards? is it cash only? all comments appreciated.

Thank you...

hello
i paid by credit card and it wasnt a problem at all and in the hospital there is a bank as well in my country we use euro then i change bulgaian money from there cause they dont accept euros yet
hope u do well gd day
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Getting the CD to work (and Dianne's update)

Postby djh » Thu Aug 19, 2010 6:53 am

Hi all, Dianne was Liberated on July 27 by Dr. Nikolay Iliev and his team and we are pleased to report that the cane (and walker) are long gone, temporarily replaced with a single hiking pole. Balance and bladder control is wonderful (ie. NORMAL), numbness in hands and feet is greatly improved (improving more every day), swallowing /choking issues are gone, circulation in hands and feet are normal (no more spasms or poor color). Physio is starting right away to re-learn how to walk normally again. All is good here!

Now, to get the CD to work depends on the operating system your PC has. The CD probably works with XP properly but if you have Win 7 like I do (or Vista) you will need to download an updated viewer such as Radiant DICOM Viewer. There are 32 and 64 bit versions depending on your system requirements. Here is a link to the viewer that I used:

http://www.radiantviewer.com/manual.php ... 0.19.1.272

Just download and install and then browse to the CD. There is a movie button in the viewer and you can change the frame rate to make the viewing as fast or as slow as you want it. As for MAC users, I'm sure that you can google a DICOM viewer for that platform as well.

Dianne and I extremely happy with our experience in Bulgaria and have booked a follow-up doppler with Dr. MacDonald in Barrie in November.

Warmest and best regards to the July 2010 Liberation group that we met and befriended, Fred and Di in NB.
Last edited by djh on Fri Nov 19, 2010 3:16 pm, edited 2 times in total.
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Re: Getting the CD to work (and Dianne's update)

Postby ven » Thu Aug 19, 2010 8:03 am

djh wrote:Hi all, Dianne was Liberated on July 27 by Dr. Martinov and his team and we are pleased to report that the cane (and walker) are long gone, temporarily replaced with a single hiking pole. Balance and bladder control is wonderful (ie. NORMAL), numbness in hands and feet is greatly improved (improving more every day), swallowing /choking issues are gone, circulation in hands and feet are normal (no more spasms or poor color). Physio is starting right away to re-learn how to walk normally again. All is good here!

Now, to get the CD to work depends on the operating system your PC has. The CD probably works with XP properly but if you have Win 7 like I do (or Vista) you will need to download an updated viewer such as Radiant DICOM Viewer. There are 32 and 64 bit versions depending on your system requirements. Here is a link to the viewer that I used:

http://www.radiantviewer.com/manual.php ... 0.19.1.272

Just download and install and then browse to the CD. There is a movie button in the viewer and you can change the frame rate to make the viewing as fast or as slow as you want it. As for MAC users, I'm sure that you can google a DICOM viewer for that platform as well.

Dianne and I extremely happy with our experience in Bulgaria and have booked a follow-up doppler with Dr. MacDonald in Barrie in November.

Warmest and best regards to the July 2010 Liberation group that we met and befriended, Fred and Di in NB.


sooooo happy ur doin great hope you stay getting better each day...
can i ask u if u did the stent or just ballon plsssssssssssssss
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Re: Getting the CD to work (and Dianne's update)

Postby djh » Thu Aug 19, 2010 8:31 am

ven wrote:sooooo happy ur doin great hope you stay getting better each day...
can i ask u if u did the stent or just ballon plsssssssssssssss


Hi ven, no stents were used for me. I had 70% stenosis in the L & R Jugular and the Azygos. The follow-up doppler was good with no re-stenosis apparent. I am going to Barrie in November for the re-check as I stated earlier. Warmest regards, Di.
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Postby pinksapphire » Thu Aug 19, 2010 10:16 am

I was liberated in Sofia, Bulgaria on April 30th by Dr.Petrov.
Just hours after my procedure my pressure dropped and I almost passed out. Within minutes my room was filled with doctors and nurses.
I was told that my baroreceptors had been aggravated and it would pass in a few days. I ended up back in hospital the second day after my release with low pressure again. Again they said it would pass.
I get home and was trying to recover from the whole trip, that took about 3 weeks. After that I felt totally normal. I was living, doings things, going places. I was in heaven.
Then on July 26th I had my daughter out shopping and started to feel a little weak.
Then it went all down hill since then.
Low blood pressure all the time. I can't keep my systolic above 108 and it drops to 94 quite often. My diastolic is usually low to mid 60's. I almost passed out a few times...not a nice feeling. My normal BP was always 120/80.
It's not the same tired as MS fatigue, and I still have my balance, muscle strength. My walking is still much better, but I am tired from the low pressure.
Why was I fine for almost 3 months then it happens again?
If you know anyone that this has happened to please let me know.
I had blood work, that was fine. I see my vascular surgeon this Monday and I have a referral to a cardiologist.

I have a topic on it-- http://www.thisisms.com/ftopict-13271.html
Thanks!
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Postby colapesce » Thu Aug 19, 2010 4:11 pm

hi Pink,

I was the week after you and had similar problems of feeling like I was going to pass out after procedure. What meds are you taking now? I've been getting terrible fatigue, which, like you mention, is different to the kind I experienced pre-procedure. I also still get dizzy and weak. I've stopped taking Plavix, Detralex and Modafinil and have seen a slight improvement. I only felt real improvement for about 3-4 weeks. I go back to Sofia in October. Hopefully by then I'll feel better - I want it to be a holiday this time around!

I really hope you feel better soon.

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Postby colapesce » Thu Aug 19, 2010 4:13 pm

Forgot to add - walking is still much improved :)
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Postby Kar » Thu Aug 19, 2010 10:02 pm

Hi,
Thanks everyone for your replies re the discs working. Mine doesn't work on a mac or pc (I think pc is the only way they will work). Interesting Taps that you got 3 discs and I got one; our procedures were about the same length (2 and a half hours), but you were a day later and had a different doctor. Perhaps the doctor is key.
I think that I will write to Dr. Grozdinski and ask if I can have another one. As I mentioned, there is a doctor at the imaging clinic here that would like to see it.
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Postby ven » Thu Aug 19, 2010 10:32 pm

pinksapphire wrote:I was liberated in Sofia, Bulgaria on April 30th by Dr.Petrov.
Just hours after my procedure my pressure dropped and I almost passed out. Within minutes my room was filled with doctors and nurses.
I was told that my baroreceptors had been aggravated and it would pass in a few days. I ended up back in hospital the second day after my release with low pressure again. Again they said it would pass.
I get home and was trying to recover from the whole trip, that took about 3 weeks. After that I felt totally normal. I was living, doings things, going places. I was in heaven.
Then on July 26th I had my daughter out shopping and started to feel a little weak.
Then it went all down hill since then.
Low blood pressure all the time. I can't keep my systolic above 108 and it drops to 94 quite often. My diastolic is usually low to mid 60's. I almost passed out a few times...not a nice feeling. My normal BP was always 120/80.
It's not the same tired as MS fatigue, and I still have my balance, muscle strength. My walking is still much better, but I am tired from the low pressure.
Why was I fine for almost 3 months then it happens again?
If you know anyone that this has happened to please let me know.
I had blood work, that was fine. I see my vascular surgeon this Monday and I have a referral to a cardiologist.

I have a topic on it-- http://www.thisisms.com/ftopict-13271.html
Thanks!


Hellooo
am sorry to hear this am just the same..
they just made me a ballon i was doin great no back pain at all and walking was working on it but just after 3weeks the pain came back and am d same as i was:(
so now am going back maybe they do me the stent and i come better..
what did u do stent?and are u thinking f going back?
regards ven
gday
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disc now works(:

Postby Kar » Fri Aug 20, 2010 7:56 pm

For a school teacher, I certainly don't read very well! Thanks so much Fred - when I finally read your response and downloaded the recommended program, the disc worked fine. I watched it with both fascination and nausea as I saw that balloon working its way deep inside my veins.
So pleased to hear about Diane's many improvements. That's wonderful!
I can relate to some of the blood pressure issues I'm reading about here as I was very lightheaded for the first two weeks; I had my blood pressure taken once at the doctor and it was low, but in the normal range 110/70. Also, I find myself puffing with less exertion now - odd. I guess it stands to reason that the whole cardio vascular system needs some time to adjust to new blood flow patterns. Finishing the pradaxa (about one more week) might help too. On the positive side, I'm really enjoying wonderful sleep and virtually normal bladder and bowel function.
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