Ccsvi

[Walter.it]

I just want to say THANK YOU to

buthayna New Member (Say Hi)
Registered Member
Join Date: 2010
City: Riyadh
State: nuorth
Country: KSA
Diagnosed: 00/0000
Posts: 2

after the post on the mother, positive to CCSVI, i asked to check my wife (43 y.o. ALS patient since May 2007) with ecocolodopler.
They found one giugulair vein cloesd and second giugulair 50%.

In one day (last week) they reopened the veins and now she feels stronger.

Also a friend of mine (Als since Nov. 2008) came with us, and opened both giugulair veins !

Thank you again to everybody.

I will let you know what will happen in nexts weeks.

Walter.

 

[Jim Mulligan]

That's great news Walter!

Yes, please keep us informed!

I had dinner on Wednesday evening with a man who flew into Atlanta from New Mexico for his follow up doppler scan at CCSVI Atlanta.

He was straightforward and honest with me and said since his procedure his balance is greatly improved as is his drop-foot.

He urged me to have the procedure, as I can barely walk.

I'm happy to hear you have positive news Walter!

-Jim

 

[fallen angel]

This is great to hear..... Please tell more! "I SO WANT TO TRY THIS" but my doctor's won't even answer my e-mails What to do, What to do? :|

Rosann

 

[Walter.it]

YES !
Also my friend that made the CCSVI treatment with my wife on Friday 22 Oct. phoned to me yesterday and reported an increased balance in walking...
He also reported, like my wife, a general wellness and more strenght. (my wife is on a wheelchair since one year).

to fallen angel:
if you want more information on where and how my wife did it, please ask me.
It is an European Hospital, where they made a center for CCSVI. I can give to you all you need to keep in touch.

I hope that next time I will be able to tell you more better news !

Walter.

 

[fallen angel]

Walter, That's great news! We are waiting on an up-date on the progress to date. ---- Yes, I'd love to know where in Canada I can get tested and treated.

Jim, How are you doing? Did you get the treatment?

Fallen Angel

 

[Al]

Not sure but I think Sask. is doing the procedure.

AL.

 

[fallen angel]

Hi AL, Are you interested in having it too?

 

[Jim Mulligan]

Hi Fallen Angel,

No, I have not had the procedure done yet. It is pretty expensive ($10,000), and while I would gladly pay any amount to be able to walk normally again, and to be relieved of all my other PLS problems, I have not seen any evidence that it will be effective on Primary Lateral Sclerosis. On the various CCSVI websites there are many people posting for whom the treatment does no good whatsoever. I will wait until the dust settles and all of the hyperbole surrounding the treatment gets replaced by fact (hopefully).

Jim

 

[Walter.it]

hallo everybody, last Saturday a friend of mine with bubar als since one year, has gone for liberation.
She had two severe 50% and 60%stenosis at both giugulair veins and one very severe 80% at azigos.

She suddently felt better, after few days she move much better arms and all fingers except "the small" at one hand. She is now also able to say few words !

by my side my wife and my friend that had liberation since one month feel every day a little beat better ... no big improvment, but very small advatages that remain stable.

all the best to everybody.
walter

 

[Alyoop]

Please don't call it liberation. People are dying ( 3 now). Even Zamboni is now saying it seems to mainly decrease fatigue rather than all the hype suggesting otherwise. Fatigue is subjective.His latest data also is showing that it needs to be repeated after 18 months in about 50% of cases. I have just sat through a 3 hour update about it! It doesn't work for MS and certainly makes no sense for other neurological illnesses.
It is being called the biggest internet Fad to hit medicine. The data is not robust, has no proper scientific criteria to measure any benefit, and his data is unreliable.

Please, please talk to your neurologist before, risking your life and having a wallet biopsy.

 

[Walter.it]

sorry for misunderstanding,
but everyone that is a little beat familiar with ccsvi knows that the procedure that use the ballon in the veins is commonly called "liberation" ... of the veins.

I am not an expert, I was only sharing my personal experience about my wife and two friend of mine, Als patients, that was positive at CCSVI and already reopened their jugulair veins.

I apologize for disturbing you, I will not write anymore.

Walter.

 

[tdamess]

sorry for misunderstanding,
but everyone that is a little beat familiar with ccsvi knows that the procedure that use the ballon in the veins is commonly called "liberation" ... of the veins.

I am not an expert, I was only sharing my personal experience about my wife and two friend of mine, Als patients, that was positive at CCSVI and already reopened their jugulair veins.

I apologize for disturbing you, I will not write anymore.

Walter.

well it seen to help some people with or without a.l.s. , there is also a chance on any operation something can go wrong and it does happen so the choice will be up to the person all ideas are welcome in my book . they also use this procedure for heart and circulation problems also can prevent strokes .. you have not disturbed me and welcome any information some one has to offer and i will decide if i think it is worth anything .. i will consider a study done with so many people but not believe in it unless it was a total failure if it did help some people i would consider it , like medicine for humans not all meds help a certain condition on some people for same problem they need different ones and like a.l.s. it all works the same way just different types and progressions , our bodies are the same but work differently also . example ... thyroid doctors have a scale they go by .45 to 5.5 any where between you are fine but a lot of people are not and 10 years later it will say different and you have a thyroid problem you get the med for it and when your at a level you should be things you suffered for 15 or 20 years go away you see it is not the scale that is wrong it is where you yourself belong on that scale ( if 1.5 is where my body belongs but , my test say 3.9 i have a lot of symptoms but scale say i am fine ) so i welcome any insight to anything but i will do my own reasoning

 

[Alyoop]

I agree that is a decision that is personal. but most people are not able to tread through the dats and fully understand the meaning, especially with all the hype. The venous system is very tortuous normally. Its just the way we are designed. It is easy to tell someone that they have CCSVI when in fact its normal, as the new research is proving. Zamboni uses a balloon which is safer than the stents, that just shows how people are making money from it. New clinics are opening all over the world to get injh while the going is good, and the long term safety and efficacy data is still known.
It is important that there is a voice of reason. The Professor in MS that gave the update at a scientific meeting has spent hours and hours looking at both sides, the scientific data, results etc. He would love it to be true and therefore help his patients, but unfortunately it is not. How many people who have had the procedure, have trolled through the data on both sides, and made a truely INFORMED descision. I suspect none. It is just hope that drives people, which is fine, except the greedy people are getting richer, stenting normal veins, telling people they are partially blocked when they are not al all.

Its the Apricot kernal craze all over again.

Walter. I was not offended. Its just that the name is unfortunate, and was given by some money hungry quake, to make the patients feel "liberated". Ia m not offenede, and me being offended or not does not matter, all that matteres is that people know both sides of the debate, before having a risky procedure. The dead people are not feeling very Liberated, nor the few New Zealanders who went and tried it, who are considerably poorer at present, with no benefit. Just wait longer until more data is coming out. Its starting to filter into the journals, and with Zamboni backing down a bit, it will soon die away.