This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Sofia,

Thanks for your post. I will be there on the 7th of June and have a clearer picture of the procedure.
I'm so happy for you . I wish you many, many improvements.





who will be there on or around the 7th of June??

Sofia, way to go friend!!!

I know good thinks will happen for us. Keep it real and be patient.

Tell Petrov i love him haha

Thank you guys
Tiered today, but not dizzy so far. But not always dizzy in mornings anyway. Feeling all right. Legs have not been tiered and weak after operation, at all.

BTW they have heated toilet seats down here, with all sorts of fancy shmancy features.

HAHA yeah aint this cool?

Just use the button we all know. It s in the know position haha

sofia wrote:Thank you guys
Tiered today, but not dizzy so far. But not always dizzy in mornings anyway. Feeling all right. Legs have not been tiered and weak after operation, at all.

BTW they have heated toilet seats down here, with all sorts of fancy shmancy features.

soo happy for u:):)

Hi Guys I'm on at last!! I have been reading all your posts over the past month about CCSVI but couldn't seem to get on to post myself. Anyway here I am and now I don't really know what to say I have gone all shy !! Want to say thanks to Pinksapphire - I read your facebook that you kindly invited us all to read. So glad things are on the up for you and it was amazing to see your before and after footage long may it last! I also felt I knew exactly how you were feeling when you mentioned about sitting on the sofa all day! Sofia your post was helpful too as you too gave a little insight into procedures etc. I go towards the end of june and trying not to think about it all the time so as not to temp fate because I may not even get off the ground with the volcanic ash etc so a bit nerve racking. Costume I hope you are feeling better again today you sounded more hopeful in your last post.ven, pm mouse, sbr 487, colapesce chris sisterofms dr bart carabboo, Burg and anyone else I have missed. I am rooting for you all. We are all looking for the same miracle! Dr Zamboni rocks!!

Ps sorry got carried away so now I know about the cost and that some of you were asked to pay extra but not all of you so will need to watch out for that. If my nurse is dripping in gold I will become suspicious!!
I know a bit more about the stents etc and that some need medication if they have had stents, I also know to look out for blood pressure as problems here can be common. What I'd like to know though is that after you get liberated do you still need to take your ms injection meds etc??

Thanks for your time

Koko

Welcome, Koko.
I'm afraid I never took the MS drugs so someone else will have to answer that one for you.
Are you on the waiting list yet?
I didn't have any stents but still have to take 100mg of Aspirin, 75mg of Plavix and 500mg of Detralex twice per day. The Plavex is only for 3 months. Not sure if/when I can stop taking the others until I go back in 6 months' time.
As you can probably tell by my longer, more detailed post, My energy levels and cog fog are very much improved!

As for any fear, I refused (or was so fogged up) to even think about until I reached the operating room... then I prayed to anyone/anything that would listen But it's really not sooooo bad and so so worth it!

Good luck!
Belinda

Hi colapesce, how are you! Im booked in for the end of June. I feel a bit nervous but all of the stories have helped me. You sound as if you are doing great which is fantastic. I'm sure we are all going through the same journey and part of me feels its too good to be true so Im trying not to think about it too much although it is always there! Im not too keen on hospitals either but I just need to bite the bullet and get on with it. I guess I need to brush up on my Bulgarian language and learn words like more vodka please, pile on the pain killer drugs and where's the loo!

Koko

Ha ha ha.....that would be good to learn in ANY language!

I am scheduled for sometime in October or November...wish it was sooner tho! And I wish I could have it done here in Canada!

But, at least it will get done.

Thank you all for paving the way.

haha I wish I'd looked those up before I went.
If you're serious about learning some phrases and you have iTunes then search for 'survivalphrases' or 'Bulgarian' in the podcast section of the store. You get 15 basic lessons for free and they're really good. You can also download the pdf written versions at the survivalphrases website so you can see what the words look like but I think they only give away 10 for free.

It's a fab language

Good luck when it comes around Village Maid. It seems a long time away is it Bulgaria you are going to? Colapesce I might look up some basic words it wouldn't harm to know a bit more. The written Bulgarian language looks like English written backwards don't you think?

Koko

haha, yer, it's mental!

Ha ha ha...yes it's Bulgaria I'm going too.....will be hard to get a grasp of language.

Hello Everyone

Good News! They did the venogram this morning and the left jugular vein was 60% blocked, the right Jugular vein was 70% blocked and the right Azygos vein was 90% blocked. The procedure took about an hour & a half. The most painful part was the muscle spasm in my right leg before they started the procedure. When they did the procedure I didn't feel anything until they did the ballooning of the veins. I hardly felt the left Jug ballooning. The right jug ballooning was a liitle more painful and the right azygos vein was the most painful. It wasn't really painful, mostly an uncomfortable pressure. When they did the Jugular veins it sounds like water squirting in my ear. The length of time of having this uncomfortable feeling was only for about 10 to 20 seconds at most. It may not have even been that long. So really not a big deal. Doctor Petrov said that this is a normal feeling.

Doctor Petrov said the the veins responded really well to the ballooning, they were quite elastic, so no stents were needed. He indicated that he felt that the chance for re-stenosis was low because the veins responded really well to the ballooning. If they do restenos it will most likely be in the first 6 months and so far the Azygois viens have less chance of restenosing.

I felt more awake and refreshed right after the procedure. Just felt good. Christine says that I have better color. That I just look better. Imagine that after 31 years the old guy is looking better! For the last month my right foot has been swollen, the ankle was almost twice the size of the left ankle. 8 hours after the procedure the swelling in my ankle is gone. Also the muscle tightness in my right side that was pulling my ribs down onto and below my hip bone is dramatically reduced. The area is now soft and there is actually some separation between the top of my hip bone and the bottom of my ribs.

As they are very concerned about bleeding after the procedure from the incision area in my groin they will not let me get out of bed, so I have spent the entire afternoon in bed flat on my back. Tomorrow I will be able to test the balance and walking ability.

Overall I am more comfortable and relieved that they found some blockages. I am on heparin by IV until tomorrow. After that I am to take plavinex for the next month or more and an asprin daily.

The care here has been exceptionally good. The hospital is very modern and their equipment is state of the art. The doctors are very professional and personable. The have answered all of our questions and will be giving us a CD of the venogram showing the veins before and after the procedure.

We are very impressed with the hospital, the care and the medical expertise.

I spoke with your wife today, happy to hear about the results of procedure.
sophie