CCSVI in Bulgaria

[livabird]

THAT SOUNDS LIKE MORE THAN ENOUGHSTUFF. THEY JUST NEED YPIR MS HISTORY. I WISH THIS HAD COME OUT TWO YEARS AGO OH WELL MAYBE O WHILE EVENTUALLY GO BACK TO THE WAY I WAS. IT HAS GOT TO DO SOMETHING IF THEVEINS ARE UNBLOCKED.

[livabird]

I KNOW THE FEELING V. I AM PROGRESSIVING RAPIDLY AFTER YEARS OF NOT MUCH HAPPENING. THEY DON'T KNOW IF IT REALLY HELPS PPMS BUT HOPEFULLY IT STOPS PROGRESSION.

[Vhoenecke]

I sure hope it does Livabird. You take care.

[pinksapphire]

I received confirmation from Dr. Grozdinski and I'm going to Bulgaria for the liberation treatment on April 28th!!!! I just came back from False Creek in Vancouver and there is an abnormality on the right side of my neck.....Great news all around!!

[pollywogsis]

that is great pinksapphire. I received confirmation and I'm in for April 29. Hopefully we will meet.

and congrats on results from False Creek.

PWS

[pollywogsis]

Fellow MS’rs- annad, youbetcha, livabird and others,

Thank you for your encouragement, understanding, empathy, sympathy, etc.
Your comments made me feel as if I am not alone.

I have to agree with Livabird, that there really aren’t talking about their lived reality after being liberated. I wonder why that is?

Alanbrowne,
Your surgery is March 29. Wow, it will be here before you know it.
Is that in Bulgaria? Would you please keep us posted regarding what happens post surgery. Specifically, what happens with you MS symptoms.

PWS

[annad]

People helping people. Just trying to help and support one another through this new territory!

[annad]

pollywogsis
What did you mean by:

I have to agree with Livabird, that there really aren’t talking about their lived reality after being liberated. I wonder why that is?

Not sure I know what you're referring to.

[pollywogsis]

Hi annad,

Post from March 14 Livabird says "I AM EXCITED ALSO BUT A BIT NERVOUS TOO. FRANKFORT IS CLOSER FOR YOU ALAN THAT IS I HOPE WE ALL COME BACK ON HERE AFTER OUR LIBERATIONS. IT IS HARD TO FIND MANY TALKING ABOUT THEIR AFTER EFFECTS"

I understood this as meaning that it is hard to find people who are sharing what they experienced or are experiencing post liberation. This certainly has been my experience.

Hope this clarifies,
PWS

[annad]

Thanks pollywogsis,

I thought I've seen a topic for that. Just recently someone was asking the Stanford people on an update. I'd have to look for it though.

[pollywogsis]

O.K. THANKS

Please keep me posted

PWS

[Vhoenecke]

I wonder if the symptoms are where they were but just won't get worse. If there is neuro damage it would take years/decades to get better. We are just at the beginning phase. Too early to tell if getting better but I'm sure they are not worse. Will have to talk to Erika from the Poland liberation and ask her if she is noticing improvements.

V

[ErikaSlovakia]

I wonder if the symptoms are where they were but just won't get worse. If there is neuro damage it would take years/decades to get better. We are just at the beginning phase. Too early to tell if getting better but I'm sure they are not worse. Will have to talk to Erika from the Poland liberation and ask her if she is noticing improvements.

V

Hi there
I am 123 days after the procedure in Poland.
Before I start, do not forget one thing: we all have different MS complications and we are in different situation. It means somebody has the procedure 15 years after being PPMS or 1 year after being RRMS after one attack. I do not even thing we could compare a lot.

Some people might have also another health problems like I found about my anemy and doctor things I might have B12 deficiency as well. They will check my blood next Friday - March 12.

I was feeling bigger improvements the first 14 days, then the walking after 6 weeks.
Of course I do not know exactly what is going on in my brain or C spine now.
I do not feel any big improvements now.
I still have problems to wake up, my brain is still foggy, my vision is as bad as before the procedure, I am still weak, I still have neuropathic pain, but my walking is really better than before the treatment, I feel ma balance is still better than before, I am moving faster than before, on the other hand I still have problems with headache, I am still very sensitive to weather change, I feel fatigue after I exercise or doing something more than usually. I for sure do not feel worse and I for sure did not have any attack.
Before I had my procedure, reading from Zamboni`s papers I knew some of my symptoms should be better after and my attacks/MS progression should stop.
I knew we would need some more treatment but doctors are working on it. Like Haacke with his team are working on iron deposits in our brain, doctors also know about are immune problems etc.

So quality of my life is better but unfortunately I am still not able to go to work.
Any questions?
Erika

[JOJOB]

Thank you Erika for all these details;, It helps to know what to expect after the procedure. Even so, as you said everybody is different...
It still a guide for us.

[livabird]

THANK YOU ERICA. YOU ARE RIGHT DEPENDING ON OUR CIRCUMSTANCES WHAT WILL HAPPEN AFTER TREATMENT. I DON'T EXPECT ANYTHING MAJOR MAYBE JUST HAVING WARM FEET AND LESS PAIN. MIND YOU BLOCKAGES CAN'T BE NORMAL WHEN THEY ARE CLEARED SOMETHING POSITIVE MUST HAPPEN IN EVERYONE. WE NEED MORE PEOPLE LIKE ERIKA REPORTING BACK.