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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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pinksapphire
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PostPosted: Sat Aug 21, 2010 9:27 am 
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colapesce wrote:
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.

Cola



I too am off the Detralex and Plavix.........I am feeling a bit better today although not sure if it will be any better tomorrow.
I am supposed to go back to Bulgaria in October as well, but I just cant afford to :(
We'll see what the next few weeks bring, hopefully more healing and no more damage.
This is all so new to us and there is no handbook that we can go to to find out what to expect post procedure.
Thank you for all for your comments. I don't feel alone now :)

I wish everyone well. I will keep you posted on my progress.

Thanks.
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RobSandra
PostPosted: Sun Aug 22, 2010 8:53 am 
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Taps wrote:
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.


TAPS, Great to hear of your progress. Let us know when you head back to Sophia.
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ales
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PostPosted: Mon Aug 23, 2010 9:59 pm 
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Hello to all,
It's been a while since my last post but the family is currently on vacation in Sweden and I needed time to adjust to the time change (again) and evaluate my progress. It has been a month now since my Liberation in Bulgaria and though things are far from perfect, I do seem to be progressing and I am a million miles ahead of where I was 30 days ago. My gait and balance are better. I still continue to have some tingling in the bottoms of my feet and hands but the pain is ABSENT For me I have not been pain free in well over 10 years. I have better stamina and with my own regiment of training, I hope to continue to improve. I try not to overdo things and rest before I completely collapse but no matter how tired I get I no pain in my legs. I have now finished my blood thinners and am now down to Aspirin and some Vitamins but I took my last BetaSeron shot on July 16th, over a week before my intervention. I have read many of the posts and hope for all of us a continuation of the success and that the few who seem to endure a constant sense of worry and frustration that they may find some answers. Be well my MS family.
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ven
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PostPosted: Tue Aug 24, 2010 12:38 am 
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ales wrote:
Hello to all,
It's been a while since my last post but the family is currently on vacation in Sweden and I needed time to adjust to the time change (again) and evaluate my progress. It has been a month now since my Liberation in Bulgaria and though things are far from perfect, I do seem to be progressing and I am a million miles ahead of where I was 30 days ago. My gait and balance are better. I still continue to have some tingling in the bottoms of my feet and hands but the pain is ABSENT For me I have not been pain free in well over 10 years. I have better stamina and with my own regiment of training, I hope to continue to improve. I try not to overdo things and rest before I completely collapse but no matter how tired I get I no pain in my legs. I have now finished my blood thinners and am now down to Aspirin and some Vitamins but I took my last BetaSeron shot on July 16th, over a week before my intervention. I have read many of the posts and hope for all of us a continuation of the success and that the few who seem to endure a constant sense of worry and frustration that they may find some answers. Be well my MS family.


hello
am very happy for u..wish u best of luck..
make i ask u somthing pls i made libertion but it didnt work
am going for the sten,what did you do pls?
tks a lot
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ales
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PostPosted: Tue Aug 24, 2010 2:16 am 
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Hi Ven,

I never got a stent only the balloons. I have secondary progressive and have had positive results but still deal with many issues. I am very happy for whatever results I did get because before this I was VERY close to a wheelchair and now maybe I still have some hope that I may be able to avoid that. There is still a lot of work ahead but at least there is now hope. I wish you all the luck in the world and hope round 2 is better for you than round 1.
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ven
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PostPosted: Tue Aug 24, 2010 7:45 am 
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ales wrote:
Hi Ven,

I never got a stent only the balloons. I have secondary progressive and have had positive results but still deal with many issues. I am very happy for whatever results I did get because before this I was VERY close to a wheelchair and now maybe I still have some hope that I may be able to avoid that. There is still a lot of work ahead but at least there is now hope. I wish you all the luck in the world and hope round 2 is better for you than round 1.

hey again :D
thanks a lot hope so to i was doin great for the first weeks now we see in 3weeks i be there and very looking foward to..cause am still very ypunge and have a life in front of me hope so :lol:
gday if i want send me private mesage and ill give ypu my email and keep u posted lol
tkssssssssssssss
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animal66
 Post subject: Hi All
PostPosted: Thu Aug 26, 2010 2:36 pm 
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I was Liberatedn in Bulgaria in July. My right Jug was fine my left Jug was 88.0. Now for my asyagus it was blocked 99.99. So explain to me why I dont feel any different ,Istill have the tingling in my hands and feet. Bladder controll is the pits. Iam not as tired as I used to be but that is all I can say that I feel is different.

When the opened the asyagus vien it hurt so I know they did something in there,and for 4days it hurt when I took deep breathes.

Ireally do not want to go back again but I dont know what to do, Is time the key or could it be closed viens again. It is such a long way to go for a 15 min checkup. WHAT TO DO WHAT TO DO
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pinksapphire
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PostPosted: Sun Aug 29, 2010 10:20 am 
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ven wrote:
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


Hi Ven,

It's just my blood pressure issues, now I have an irregular heart beat. Waiting to see the doctor on that. My leg was better a few months after the procedure....now it seems to be a bit weaker, still much better than before my procedure though.
I cant go back :( can't afford the trip again.
I didnt get a stent, just ballooned many times in each jugular.

I wish you the best and hope you can make it back to Sofia and get better.
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Anya
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PostPosted: Thu Sep 02, 2010 5:23 am 
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Hello everyone.

It has been more then a month since my husband had liberation procedure done. (July 15). He is feeling better. Improvements are still there. However, his fatigue seems to be the same. He did experience improvement in breathing and overall balance. People notice that his face has changed. On August 18 he had an appointment in Barrie, Ontario for the dopler ultrasound to check if veins are still open and thanks God they are. We have another appointment in three months. By the way, just to remind everyone if you are from Ontario it is absolutely free.

I will do another update probably in a few months after my husband will have another dopler done.

Good luck to everyone.
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Taps
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PostPosted: Thu Sep 02, 2010 6:27 am 
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Awesome post Anya. Thanks for the update.

I've also got an appointment to go to the Barrie clinic late September.

One of my veins closed up the morning after procedure unfortunately, so i'm hoping the other two have stayed open... :roll:

T.

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Kar
 Post subject: follow-up checks
PostPosted: Fri Sep 03, 2010 10:33 pm 
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On our discharge report from Bulgaria, it suggested a follow up doppler at 6 months. Many people seem to be booking them much sooner. I guess curiosity and concern prompt that. I haven't decided when... not that I don't wonder every day if my veins might have closed! Of course having to PAY for it here in B.C. no doubt influences our decision. How often can you get them done in Barrie?
I've got my fingers crossed for you Taps. Let us know.
This site is sure quiet now, probably as a result of the stoppage of CCSVI procedures due to staff holidays at Tokuda Hospital.
Kar
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ven
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PostPosted: Sat Sep 04, 2010 2:09 am 
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tomorrow of to sofia the 2ndd tims hope this time i be good
finger cross
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RobSandra
 Post subject: Re: follow-up checks
PostPosted: Sat Sep 04, 2010 10:24 am 
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Kar wrote:
On our discharge report from Bulgaria, it suggested a follow up doppler at 6 months. Many people seem to be booking them much sooner. I guess curiosity and concern prompt that. I haven't decided when... not that I don't wonder every day if my veins might have closed! Of course having to PAY for it here in B.C. no doubt influences our decision. How often can you get them done in Barrie?
I've got my fingers crossed for you Taps. Let us know.
This site is sure quiet now, probably as a result of the stoppage of CCSVI procedures due to staff holidays at Tokuda Hospital.
Kar


Hi Kar
We are going to Barrie in mid Feb for the follow up exam.
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devine
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PostPosted: Tue Sep 07, 2010 4:19 pm 
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ven wrote:
tomorrow of to sofia the 2ndd tims hope this time i be good
finger cross


Hi Ven,

Good luck and keep us posted as I will be going next month (2nd time) and still have to come up with a decision of stenting.... so scared to stent if anything goes bad and for blood clots (don't want to put my life in danger).. are we going to be able to get help down here in quebec.... anybody out there that can suggest to me any kind of feed back of pro' s and con's... I feel like it's a catch 22.... I might be screwed if I do and screwed if I don't..... so confused... and if I can't make up my mind I just might not do anything at all when I go other than the doppler exam.... Please help me anybody!!!

Thank you,
Donna
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danw
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PostPosted: Wed Sep 08, 2010 12:41 am 
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I share the Catch22 sentiment. I think this is why, ultimately, many people choose to have the procedure without more than a gut feeling that it might help. I see lots more Youtube Pre videos than Post Videos and I wonder if people are not seeing much improvement and are waiting to see 'if it comes' before they post. Yes, I;m sure the medical teams are well intentioned good people, but I need more than that.

So hard to navigate this maze and despite everyone's best intentions, we still don't know if this procedure is beneficial for all and worth the risk (however small that risk may be). Hoping this doesn't sound too negative because I'm positive and don't like chanting the "lack of evidence" Neurologist line, one bit :)
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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