CCSVI in Bulgaria

[annad]

Thanks for sharing, Erika. It's good to be reminded that improvements are going to be different for everyone. We all know what a difference it would make to even have one or two of our symptoms improve!
Keep staying 'well'!!!

[Vhoenecke]

Thank you so much Erica, like you said we all have to be aware that we are all different in our time with ms and how it affects our body. You have helped me a great deal. It would be my dream for all of us to get together and have a day to talk. This site ,for sure, is the next best thing.
I wish you all well and if at best our ms doesn't get worse that's something more than we had 6 months ago. You are all in my thoughts.

Val

[pollywogsis]

Hi Erika,

Thank you for your detailed report.
I am saddened for you that you did not experience bigger, long lasting results after being Liberated. But, like you say, it will have hopefully stopped any further progression.
Just one question, knowing what you know now, would you have the surgery?
What I have learned from you is that we should go into it being okay with whatever outcome, no matter how big or small.

Hopefully, we will get more people reporting back.
thank you for your honesty,
PWS

[pinksapphire]

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

Hey polly....Would you mind if we kept in touch through email? We could exchange information about our trip. If you want you can write me at : petite_28_2000@yahoo.com

[pollywogsis]

Hey pinksapphire,

that's sounds great! I'll email you on Monday.

PWS

[ErikaSlovakia]

Hi Erika,

Thank you for your detailed report.
I am saddened for you that you did not experience bigger, long lasting results after being Liberated. But, like you say, it will have hopefully stopped any further progression.
Just one question, knowing what you know now, would you have the surgery?
What I have learned from you is that we should go into it being okay with whatever outcome, no matter how big or small.

Hopefully, we will get more people reporting back.
thank you for your honesty,
PWS

Hi, OF COURSE I would do it again.
My walking is better and faster, my movements are faster, I do not have to push my bladder when I want it to be empty, many things are easier for me like washing my hair, making my bed...heat tolerance is at least 50 % better, I did not have cold hands or feet before so I can not report any changes, I did not have any spasms before so I can not report any changes and I perhaps have stopped my attaks - we will see.
Do not forget I had about 30 lesions in my brain, I had 3 lesions in my C spine, I had 12 attacks behind me.
But yes, I hate the feeling of my weak arms. Even right now - it is always better in the evening.
Do not forget MS is very complicated illness. "Liberation" is like first aid in other cases. Everybody in the world should have better if not normal blood flow in veins.
Well, and now I must wait for next help.
And I know I must have normal iron levels, B12 levels and take care of my hypothyroidism. Moreover it is also psychological problem.
Do not tell me that everybody is just happy and people do not have any problems. Like I have my next trial tomorrow because of my disability pension.
When you look at me you would say I am the healthiest person in our town. They call me commercial for health when I am in our hospital with an attack Do not forget I have side effects from Carbamazepin. If I do not take it my neuropathic pain comes.
Do not worry, be happy and fix your veins first of all.
Erika

[AndrewKFletcher]

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

Hi Erika

Given the above quote content and the reports you made relating to your Inclined therapy experience, and given that you hve reverted back to flat bedrest, can you determine what improvements were due to IBT and what were due to the stent procedure?

Also, would you consider reverting back to IBT again but this time remain at a 4 inch incline for longer while your spinabifida problem becomes accustomed to the traction?

Your sight improvements must have been due to IBT.

If you find time Erika, re-read your posts on your ibt thread.

Andrew

[livabird]

THE INCLINE BED THERAPY IS VERY INTERESTING. I AM ASSUMING IT WOULD WORK WITH AN ELECTRIC BED. CERTAINLY WOULDN'T HURT TO TRY. I WILL PUT IT UP SIX INCHES TONIGHT AND SEE.

[ErikaSlovakia]

Hi Erika

Given the above quote content and the reports you made relating to your Inclined therapy experience, and given that you hve reverted back to flat bedrest, can you determine what improvements were due to IBT and what were due to the stent procedure?

Also, would you consider reverting back to IBT again but this time remain at a 4 inch incline for longer while your spinabifida problem becomes accustomed to the traction?

Your sight improvements must have been due to IBT.

If you find time Erika, re-read your posts on your ibt thread.

Andrew

Dear Andrew,
this is my problem. As I was using both thing at the same time I am not able to say what was due to IBT and what was due to the procedure. I just can say for sure I had improvements in hospital and a hotel in Poland and I was for sure flat.
Once you told me to buy new mattress. I was looking at my old bed and I really think I need one so I was saving money and I will have a new mattress this week.
I can only say that IBT helped me against my headache after waking up a lot and against my nausea in the morning. I also must say that the procedure helepd me as well as I could feel it after it.
My spina bifida is now much better on a flat bed. I want to try IBT again with my new mattress.
As you could read I have some other health problems. It is often not easy with the doctors. As I have MS they tend to blame MS for all my problems so I must be patient a lot.
IBT has helped one of my friend - her husband does not snore anymore and she feels better. Great! I am glad I could help - well, you could help.
Erika

[Vhoenecke]

IBT has helped me a lot. I don't have the neuro pain anymore. My husband has noticed a big difference in his well being also. Livabird I would not start off at the 6" incline right away. Got to the IBT thread it is a lot of reading but very informative. You should maybe start at 3 or 4" for a few weeks to slowly get your body used to being on an incline. I get a lot more rest now and actually feel like I have slept when I get up in the morning. That used to be my biggest complaint that I would get up and feel like I haven't slept for 2 weeks.

Val

[AndrewKFletcher]

THE INCLINE BED THERAPY IS VERY INTERESTING. I AM ASSUMING IT WOULD WORK WITH AN ELECTRIC BED. CERTAINLY WOULDN'T HURT TO TRY. I WILL PUT IT UP SIX INCHES TONIGHT AND SEE.

Only if your electric bed tilts the whole mattress from head to toe.

If it only raises the head end. Then have a 1" plywood sheet cut to same size as mattress and place under mattress. Then when you raise the upper half the whole mattress tilts

[livabird]

THANK YOU SO MUCH VAL. I WILL TRY RAISING THE FOOT AND HEAD FOUR INCHES TONIGHT. I AM ALSO ON LDN NY HUSBAND WANTS ME TO STOP AS MY SYMPTOMS DRAMATICALLY WORSENED BY I KNOW IT TAKES TIME SO I AM TRYING TO STICK TO IT. WE CAN ONLY TRY EVERYTHING THAT MAKES ANY SENSE. WE ARE OUR OWN GUINEA PIGS. IT REALLY HELPS TO HAVE PEOPLE TO TALK TO.

[pinksapphire]

Just wondering if anyone else has heard back from Dr. Grozdinski with a confirmed appointment date??....mine is for April 28th...

[colapesce]

THANK YOU SO MUCH VAL. I WILL TRY RAISING THE FOOT AND HEAD FOUR INCHES TONIGHT. I AM ALSO ON LDN NY HUSBAND WANTS ME TO STOP AS MY SYMPTOMS DRAMATICALLY WORSENED BY I KNOW IT TAKES TIME SO I AM TRYING TO STICK TO IT. WE CAN ONLY TRY EVERYTHING THAT MAKES ANY SENSE. WE ARE OUR OWN GUINEA PIGS. IT REALLY HELPS TO HAVE PEOPLE TO TALK TO.

hi Livabird.
Only raise the head of your bed and not the foot. I went straight to 6 inches as I'm impatient! Luckily it was fine for me.

[Vhoenecke]

No word yet Pinksaphire but they told me that mine would be in June hearing a confirmed date sometime in March. I expect more to the end of the month for my date. I can't wait.

Val