CCSVI in Bulgaria

msjen · Post by **msjen** » Sun Jul 18, 2010 7:54 pm

They only did the baloon in my veins (left, right, and azygous) and I was still at Tokuda for 2 nights although they did check with the doppler the 1st morning after.

ven · Post by **ven** » Mon Jul 19, 2010 12:18 am

hey everyone
how r u all doing? i did the ccsvi 2months and still not 100% good i woke up with bad back pain any one can tell me what i should do plss
thanks good day

Kathyj08 · Post by **Kathyj08** » Mon Jul 19, 2010 5:10 am

Kar,
yes, 2 nights is correct but I just had angio and no stents.
yes, just doppler ultrasound and then the venography if anything found with the ultrasound.
The visiting hours not sure about as my husband stayed in the room with me until I was released.
yes, true about the hotel pool. (a very nice hotel and nice to have warm food, hospital food always cold)

msjen,
How are you doing? We spoke with you and your sister at the restaurant the night before you were leaving and at that time you were not sure about the improvements. Hope things are going well with you.

Kathy

Anya · Post by **Anya** » Mon Jul 19, 2010 1:12 pm

Hi Kar,

1. Is it two nights in hospital for everyone, or 3 if stents are required?
My husband stayed for 2 nights.

2. Visiting hours - Anya, you kind of answered that. I take it that there are recommended visiting hours, correct?
Yes, they have recomended visiting hours but as I mentioned I could stay as long as I wanted.

3. They do an ultrasound, but no MRV as a diagnostic method - is that right?
They did dopler and then venography, No MRV for us. However, venography shows everything so why would they do MRV?

Good luck to you with your procedure

Anya · Post by **Anya** » Mon Jul 19, 2010 1:25 pm

Update #4

It is 4th day after the procedure. The official report that we have received mentioned 70% stenosis in both jugular veins which were ballooned and 10% stenosis in asygos vein where intervention was not necessary. My husband seems to improve but very slowly. It is hard to definitively give examples of what has improved but as I mentioned before his balance has improved. We are hopeful and believe that it will only continue to improve over time. My husband doesn't regret comming and undergoing the procedure. We would recommend for anyone with MS to go for it. There is nothing to be scared of. Doctors are very knowledgeable.

Ales, it was nice meeting you and your wife. Please keep us posted and best of luck to you on Wednesday. God bless.

devine · Post by **devine** » Tue Jul 20, 2010 4:52 am

Hi Anya,

Happy to hear that your seeing small improvements.. Don`t give up hope, it`s very normal that you don`t see the improvements the next day.. we can`t forget there has been several years of damage and it will take some time.. good luck to you and your husband.

take care and best of luck,
Donna

livabird · Post by **livabird** » Tue Jul 20, 2010 5:09 am

I agree Donna the ppl who have miraculous fast results probably haven't had ms long. I don't expect it too happen quicly with me i have had it 30 years. It will take time for my body to get used to it. Small improvements i would welcome.

Liva

Villagemaid · Post by **Villagemaid** » Tue Jul 20, 2010 8:55 am

I'm wondering how it will be for me.....

For all intents and purposes, it doesn't LOOK like I've had MS for the last ten years. Most of my symptoms are the non-visible ones....altho I have had relapses that have affected my mobility and I have recovered from them. So, only a few weeks with a walker or a cane (and a wheelchair at one point).

My main symptoms are TOTAL brain cog-fog.....especially the last year (since my most recent relapse in July last year). I also have vision problems....double vision, on and off, and blurrey-ness.....TOTAL fatigue, always feeling like I have to sleep or 'save' energy when I have to do something....leg spasms and spacticity.....and TOTAL leg nerve pain.

I was RRMS but believe that I have now entered the next stage (PPMS, if I'm correct?).

I only see my neuro once a year for about fifteen minutes. That's apparently all I get...here's your prescription and off you go for another year......I stopped my Copaxone before the ccsvi hit the media and have stayed off of it.

I can't wait for September 8th.

livabird · Post by **livabird** » Tue Jul 20, 2010 9:09 am

Village maid glad you stopped drugs. The next stage in rrms is secondary progressive spms. i have ppms in it is just progression i progressed slowly for years but the last two it has progressed rapidly. I am sure you will have good results. Keep the bed warm for me i come in october.

liva

devine · Post by **devine** » Tue Jul 20, 2010 9:32 am

Hi Villagemaid,

I`m like yourself but only had ms for the last 4 years and to say that my symptoms didn`t get cured over night... it take several days... I think what the tv represents as somebody not walking to walking all of a sudden gives people the wrong impression of it being some kind of miracle. In this case they might be the exceptional miracles but that is less likely.. I have invisible symptoms.. never used a cane or need to neither a wheelchair. If you saw me in person you would never know I had this disease. however I was not cured over night it did take several weeks for me to notice any differences.. Don`t get me wrong there are differences when getting procedure done. Hope this can help you all better understand and not to get discouraged.. it will happen but with time...

Good luck,
Donna

Villagemaid · Post by **Villagemaid** » Tue Jul 20, 2010 9:36 am

Thanks devine and liva......

I'm trying to approach it with not too much enthusiasm.....lol..if that makes sense.....

I've just heard people talk about increased energy and better vision....and that would be the best improvement I could hope for.....

I also think that ten years of gradual progression could take a bit to fix, if indeed it will.

Here's to hoping the best will work out!

devine · Post by **devine** » Tue Jul 20, 2010 10:55 am

Villagemaid wrote:Thanks devine and liva......

I'm trying to approach it with not too much enthusiasm.....lol..if that makes sense.....

I've just heard people talk about increased energy and better vision....and that would be the best improvement I could hope for.....

I also think that ten years of gradual progression could take a bit to fix, if indeed it will.

Here's to hoping the best will work out!

villagmaid,

I hear what you mean by too much enthusiasm.. just don`t bring yourself on a down if you don`t get the results over night and people asking you so what has changed and you can`t give them a straight answer cause it`s too early to say...(I have to admit that is the part I found the hardest) but bring on your positive vibes.. all will work out... you will get the increase energy and better vision.. it will come but with time could be two days could be two weeks... but good luck and can`t wait to read your results come September....

Villagemaid · Post by **Villagemaid** » Tue Jul 20, 2010 11:39 am

Thanks Devine!!! I'll be sure to post them!

ales · Post by **ales** » Tue Jul 20, 2010 1:08 pm

Hi everybody,
I am writing this from the 6th floor of Tokuda hospital. My procedure is scheduled beginning with tests tomorrow morning at 9 a.m. I have met many Canadians since we arrived yesterday and all are having positive results. Some are better than others and some who have had it for 30 years have had little to no feelings in their hands and legs can now feel them. It is amazing and seems that the doctors here are very thorough. Two people are back now for re-stenosis. They were taken in immediately and seem to be doing well. Again this may take some time to heal us as we didn't get this bad over night. I ave had it for 18 years and can only hope things will work out tomorrow. HOPE is them key word. For so many years we have had nothing. At least I can "try" to sleep tonight and dream of a better tomorrow. Nine months ago that was impossible. To those who have gone before me I thank you for paving the way. To those who will follow me"Keep your chin up and dream big. We have a shot now to at least have some of our lives back. This is big. Even some some advances are exactly that. When is the last time any of us could say that ANYTHING got better in relation to our MS? I will post again tomorrow after the procedure. The hospital is nice and my thumbs are staying up. Hope my fellow MSers will keep us going. Stay positive!!!!

Villagemaid · Post by **Villagemaid** » Tue Jul 20, 2010 3:46 pm

Yay!!! Thanks for the update Ales!!!! All the best!