CCSVI "Success" Stories

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby costumenastional » Fri Mar 05, 2010 4:31 am

More good news...
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Nervous

Postby sophie » Fri Mar 05, 2010 4:39 am

Hi Alan,

Exactly the same feelings here... Last week I've contacted Euromedics in Poland and let them know that if there would be an opening I could be there at once (originaly they planned me in for 2011). It turn out there was a cancelation for next wednesday (10th of March)...

My husband and I decided to do it; the money is tranfered and the flight is booked.

Before I had a date I was totaly convinced that the Liberation procedure is the way to go, but indeed, I definitley get the cold feet now... I'am also reading al the stoeries I can get and I even contacted some of the other patients that have been there.

Their stories are realy encouraging. I find that doing nothing is also extremely stressful for me. So it is also a matter of your character, if one is more comfortable with waiting then "experimenting".
Last edited by sophie on Fri Mar 05, 2010 4:47 am, edited 1 time in total.
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Postby alanbrowne » Fri Mar 05, 2010 4:43 am

Hi Sophie,
Wow, how exciting, that's fantastic news.
Like I said previously, I have a spot in May in Bulgaria, but carried on contacting everyone to try to get seen earlier and struck lucky with Frankfurt.
Please let me know how you get on...fingers and toes crossed for you.
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Postby Leontien » Fri Mar 05, 2010 4:52 am

alanbrowne wrote:
Leontien wrote:Hi :D
My appointment is on the 29th, with interventional procedure the next day is CCSVI is detected, booked flights yesterday, now just need a hotel.
Excited...nervous....everything !!!


We will arrive at the 29th and probably leave at the 31st. It's only a five hour drive for us, but that's really exhausting for me, so we'll take it slow. I've found some hotels between 120 and 180 euros for two nights/two persons, so that's not really expensive.

I'm not sceduled for an intervention procedure yet, but it's easier for me to go back to Frankfurt, because I live 'nearby'.
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Intervention on Tuesday in Germany

Postby savouryourlife » Sat Mar 06, 2010 10:51 am

I read with great interest all posts and thank everyone for replying to Alan. Replies are very helpful. I am attending on Monday in Frankfurt with possible intervention on Tuesday. I have already had an eco-doppler and was told I have the stenosis so I am hopeful that the MRV will support the findings and I will have the procedure.
I, like Alan, was having stage fright too, as I am a single mom with a 3 year old.
Again, thank you everyone for responding... I feel so much better and can leave on the plane tonight with a better frame of mind.

big hug
Feb 18, 2010 Eco-Doppler Vaughan, MRV Frankfurt, left INT Jugular valve problem x2, RRMS since 1996, Angioplasty in Frankfurt March 10/10<div>Inclined bed therapy - 09/09/10</div>
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Postby Inge67 » Sun Mar 07, 2010 7:08 am

Hi,
just to make you feel more comfortable with your decision, I thought I'd let you know that we have now 4 liberated people in Holland. 3 by dr. Simka and 1 very recent (thursday) by dr. Vogl. They are all doing well, improving every day and not regretting the investment they made in their health.

Go for it! It's worth it. The fact that you take things in your own hand must deel great doesn 't it?
I myself have been diagnosed with 70% stenosis in my right Jugular by dr. Vogl, and presently exploring posibilities on treatment.
Good luck

Inge
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Postby Vhoenecke » Sun Mar 07, 2010 8:04 am

Hi Alan, I too am worried as you are. I have 2 kids and a husband that need me. I have RRMS since 2009 Jan. I have had it for many years before that. My dad died from having MS and I don't want to go the way he did.

I am very scared, we were discussing this same thing in the Bulgaria thread. I will copy here what I posted there.

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.

Erica then came on and said that she does still have problems but her MS was not the only problem, she had anemia as well. I do believe that we may only feel improvement in the fatigue area and the symptoms may not show immediate(could take years) improvement but we won't get worse. That is what I am going into this thinking or I guess as my goal. I just want to feel better and not have worsening symptoms. I want to still be able to walk in 5 years.

We are the pioneers in this procedure and we can pray that if our kids need this that it will be improved to the point of MS being detected early and they will be liberated early and suffer no MS symptoms. That is my ultimate goal. How lucky we are to have a chance at something. Think of what our concerns were a year ago. All the best to you Alan, I do worry as well about spending the money, I guess the tax man won't be able to take it. I hope we can claim these procedures.

Val
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Postby Vhoenecke » Sun Mar 07, 2010 8:25 am

Here I am again, lots to say, thanks for listening. Erikaslovakia posted this in the Bulgaria thread since I looked last. It makes me feel better and I hope it does the same for you Alan

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



Erika is making me feel a lot better and realistic. She touched on the one thing that we msers hear all the time "You look so good!" GRRRR I wish they could jump into my body for 10 minutes their tune would change. What I have learned from MS is to realize that all people have things they are dealing with just don't assume because they look good that they are doing well. Lesson for the day. :lol:
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Postby Inge67 » Sun Mar 07, 2010 12:50 pm

Hi,

Bart, one of the Dutch who recently went to Poland for a Liberation treatment, writes a diary in ccsvi.nl, the dutch site.

It is too much to translate here, but perhaps Google can help a bit to give you a rough idea on his improvements.

Here's the link: http://www.ccsvi.nl/Resultaat/Ervaringen/KleineBart/
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Re: Nervous

Postby Zeureka » Sun Mar 07, 2010 1:06 pm

sophie wrote:Their stories are realy encouraging. I find that doing nothing is also extremely stressful for me. So it is also a matter of your character, if one is more comfortable with waiting then "experimenting".


Sophie, just to tell you that I loved that statement!

And for all those that are anxious that CCSVI might not be found...it is normal, I had the same - I was nearly sure they wouldn't find anything... But in a way it's better you go into the doppler exam with this mentality: as you will see, when they then find it - and they will if you have MS :wink: you will feel even greater !
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Re: Intervention on Tuesday in Germany

Postby alanbrowne » Mon Mar 08, 2010 1:09 am

savouryourlife wrote:I read with great interest all posts and thank everyone for replying to Alan. Replies are very helpful. I am attending on Monday in Frankfurt with possible intervention on Tuesday. I have already had an eco-doppler and was told I have the stenosis so I am hopeful that the MRV will support the findings and I will have the procedure.
I, like Alan, was having stage fright too, as I am a single mom with a 3 year old.
Again, thank you everyone for responding... I feel so much better and can leave on the plane tonight with a better frame of mind.

big hug


Hi,
Please let us know how it went in Frankfurt as I would be very interested in your experiences there.
Alan
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Postby savouryourlife » Thu Mar 11, 2010 12:10 am

Hello everyone,

well, I have been liberated. ballooning of two jugular veins. no blood thinners were given following procedure...
is this okay?
<i#m trying to read posts but most don#t mention blood thinners...
I am still in frankfurt and will do full posting of procedurewhen <i return home
Feb 18, 2010 Eco-Doppler Vaughan, MRV Frankfurt, left INT Jugular valve problem x2, RRMS since 1996, Angioplasty in Frankfurt March 10/10<div>Inclined bed therapy - 09/09/10</div>
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Postby alanbrowne » Thu Mar 11, 2010 12:55 am

savouryourlife wrote:Hello everyone,

well, I have been liberated. ballooning of two jugular veins. no blood thinners were given following procedure...
is this okay?
<i#m trying to read posts but most don#t mention blood thinners...
I am still in frankfurt and will do full posting of procedurewhen <i return home


WOW,
Excellent news :D
My flights and hotel is booked and I'll also be in Frankfurt in just over 2 weeks time.....
Can't wait for the details of your experience.
Alan
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