CCSVI "Success" Stories

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

CCSVI "Success" Stories

Postby alanbrowne » Fri Mar 05, 2010 2:46 am

Hi All,
I am 43 and have SPMS and have an appointment at the end of the month in Frankfurt and also on the Bulgaria waiting list for May.

The one thing that is concerning me is that this forum and many others are full of people like us discussing CCSVI and where and when they are going for treatment.
However, I am struggling to find anywhere that is full of "Success" stories from people returning home after treatment.

Am I just getting nervous, or being sceptical....I really don't know.
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Postby sbr487 » Fri Mar 05, 2010 3:00 am

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Postby sbr487 » Fri Mar 05, 2010 3:01 am

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Postby alanbrowne » Fri Mar 05, 2010 3:05 am

sbr487 wrote:http://www.thisisms.com/ftopict-8346.html


I've seen these posts, but there's not that many.
Maybe I'm just getting cold feet about spending a lot of money and getting my hopes up :?

When you have a wife and three young children, you just want to try anything to make everyone's life better....
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Postby sbr487 » Fri Mar 05, 2010 3:14 am

True. Not everyone might be logging in their story here.
At the same time, Barring few case, I have not seen many stories where someone said it did not work for them. CCSVI is what it is today a lot due to patients initiative. That says a lot. If scan has been done and the CCSVI has been diagnosed, I would not worry too much. So, some patients are waiting until they get +ve scan diagnosis in their country before travelling for treatment ...
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Postby costumenastional » Fri Mar 05, 2010 3:36 am

Alan, it s only normal to feel like this mate. Your hopes and fears apply to all of us.
Having said that, i think money are well spent in cases like this, as long as one can afford it.
What if you pass? Wont you regret it? On the other hand, if you go for it you ll know that you did your best. All these may sound too plain and simple but... it is plain and simple.

Do it... and you ll take it from there.

I wish you my best.
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Postby jr5646 » Fri Mar 05, 2010 3:44 am

From Facebook - Flowers4MS NOTES: Alan, if "this" doesn't make you feel better nothing will :D

These are the testimonies of the Liberation Procedures, Feb, 27 2010 - Updated on February 5th, 2010 Share
Saturday, February 27, 2010 at 9:32pm
These are the testimonies of the Liberation Procedures that were directed by Doctor Zamboni and that were written on the CCSVI in Multiple Sclerosis page and in the forums.
This information have been updated on February 5th, 2010.

Bologna Pistols – 3 settembre 2009
http://www.facebook.com/pages/CCSVI-nel ... 9997017782
First of all, I apologize for not making my real name public for personal reasons. I have been Dr. Salvi’s patient for almost 10 years and this year I have been very fortunate to have the Liberation Procedure. Liberation: the word couldn’t be more appropriate: the sensation of having a lot of energy, good mood, mental clearance that I feel is real.
Personally, I didn’t have any form of disability before the operation, so I didn’t except to see big differences compared to my previous condition…
Instead, I was pleasantly surprised. I finally understood what it meant to have “fatigue” from MS, a symptom that crawls on you and that I didn’t think I had and, instead, it was taking a lot away from me, not only physically, but in terms of mental, phsycological and social means.
To be specific, I had looser movements, more strengh, no more perennial ring around my head, no more tension around the neck and shoulders, good mood, lots of enthusiasm and especially no fatigue.
These men really found the source of the disease and a way to go against it. I have to thank all the Ferrara and Bologna medical staff. Thanks Professor, Mr. Bre, Doctor Galeotti, Anna, Maria, Erica, Ilaria, Sergio, Alessandro…(and all the friends that commented on the chicken wings that will understand who they are) with my heart.

Gabriele Fuschini, September 16th 2009
Hi everyone, I decided to write this now and to answer slowly because I wanted to take a breath before telling you my story.
I went and looked for the documents all over the house, because I couldn’t remember where I had put them…and this made me reflect on the fact that…I am feeling so well now.
I am telling you in big lines: I started having problems with MS in 1989-90.
The diagnosis was very troubling and it arrived after a hospitalization in 1995. I had 3 relapses a year for the most part. In February of 1998, I started therapy with Avonex interferon, which I stopped in June of 2000 because it had caused me a kidney problem. So I started taking an immunosuppresent, the Aziotiprina. I knew Zambo since 2006 and he asked me if I was willing to be a part of this research.
My Liberation arrived on the 10th of January 2007, I had a stenosis in the subclavial jugular and a problem caused by the azygos vein. I felt the improvements right away…no, it’s not Aza,
just like some people might say…because, after another visit with Dr. Zamboni, after doing the check up echo, I found out that I had multiple cysts in the lobe of the thryoid.
In April of 2008, I went to the neuro because I had problems with the left part of my neck for many days. In neurology, I was told that I had to take the cortisone.
While I was coming out of the hospital, and I didn’t know what Saint to thank, I met Dr. Zamboni that, after learning about the situation, he told me “Wait before starting the cortisone, come to meet me in two days”.
Then, two days later, he does the echo again and and there was a stenosis again, I went to the operating room and I was Liberated again. My story is quite long, but I couldn’t make it shorter.
I haven’t taken any MS drugs since April of 2007. What else can I say?”

Marco Gaietti, September 16th, 2009
http://www.facebook.com/pages/CCSVI-nel ... 9997017782
“Hi everyone, I have had MS since 1999 (the definite diagnosis, but I had other episodes previously that were interepreted in many ways…). I am a Liberato and I confirm that I had some improvements and that many (doctors and people that work against MS for monetary reasons) said that this is a pioneer and experimental procedure and so it is not trustworthy (what is crazy is that I was told not to follow it, but I had already done it…). If it is true that you appreciate things only after you lose them and while you have them, you take them for granted, then a little improvement (for a healthy person) is not a very big deal, but for me it was an enourmeous difference. Thanks. Mr. Bre`, the Professor and thanks to the wonderful team!”

This was translated directly by the person that has the procedure.
Gici - Wed Oct 14, 2009
http://www.thisisms.com/ftopic-8446-day ... asc-0.html
"I am back home following venogram and bilateral balloon dilatation of the jugular veins at 2 pm.
I feel well, my back is less stiff, my movements are quicker and my right leg feels already more powerful.
I am not on any blood thinners.
The procedure was carried out at the Royal Victoria Hospital in Belfast by the radiologist Dr Anton Collins while I was under the care of the vascular surgeon Mr Robin Baker.
All the team were extremely excited and believe in Zamboni's theory.
I sincerely hope that today represented a breakthrough and that many patients will benefit in Northern Ireland. The ice has been broken: I look forward to a bright future for MS sufferers.
Thank you all for the good wishes,
Gici"

Man Go – 20-10-09
http://www.facebook.com/pages/CCSVI-nel ... 9997017782
“Hi everyone!
I had the procedure done at Sant’Anna’s Hospital in Ferrara in November of 2008, with Dr. Zamboni’s team.
I had two closed jugular veins: the jugular and the azygos. After the Liberation Procedure, I felt well right away. I felt stronger and less tired….From March 11th, 2008, the day of my Liberation procedure, that happened at the center of Vascular diseases where Dr. Zamboni is the director (inside Sant’Anna’s Hospital in Ferrara) thank God! I HAVEN’T HAD ANY MORE RELAPSES! I regularly take Rebif just like it was prescribed to me by my neurologist Fabrizio Salvi. I am always ready to give more explanations if you need them.
Hugs,
Man Go”

framorgana - Sab 12 Set 2009
http://www.ideamultipla.it/forum/viewtopic.php?t=9535
Hi, I had the operation at the end of March 2008 and I haven’t had relapses since then, I didn’t have any complications from the procedure and I had only a little band aid in the groin area.
My life got better right away.
I had the Procedure during a relapse (I couldn’t feel anything from the neck down, I couldn’t see from an eye and I was very weak) two hours after the procedure, everything was gone (and no more cortisone for me).
I am writing to you because this is all true and I am the proof of this! And I really hope that the time that it will take to have other people get the procedure in many centers in Italy will be short (Dr. Salvi and Dr. Zamboni cannot take care of all the 57.000 patients all by themselves!).
I suggest to go to your neurologist and ask him to get informed in a direct way and to help make what these two doctors were able to discover a concrete reality!
I hope I have been able to help!

Giro - Ven Ott 30, 2009
http://www.sclerosi.org/forum/viewtopic ... c&start=60
I had talked about the effects of the Liberation on me in many different discussions in this forum. I am going to collect and write again the details because, in a very few days, I will get to my first anniversary. I am one of Dr. Salvi’s patients at Bellaria in Bologna. I was diagnosed in April of 2000.
I was liberated in Ferrara the first days of November 2008 by the “magi” team of the genious Professor Zamboni and by the expert hands of the radiologist Dr. Galeotti.
It was found a CCSVI, insufficient venous cronic celebro spinal of type A, that was characterized by the stenosis of the left internal jugular vein and a stenosis of the Azygos vein.
“Because these conditions don’t allow the proper venous drainage, the patient underwent on the same day a angioplasty (a baloon that enlarges the vein) that eliminated the stenosis and the congenital obstructions bringing things back to normal and lowering the venous pressure after the vascular treatment”.
How long does it take? One or two hours? I have to admit that when I was there, the last thing that I was thinking of was the lengh of the procedure. In practice, the balloon is enlarged to bring back the form of the vein and then it is taken out. It’s a techic that is used a lot in vascular surgery.
Local anesthetic, completely awake, outpatient hospital, when they take the pictures, you have to hold your breath a couple of times, after the operation, you have to stay still with your leg laying down on the hospital bed. A couple of hours more (I don’t recall well).
I felt the change right away, right after the operation (I repeat, it was local anesthesia) from the afternoon to the evening, the time that took me to get up from the little bed to get home.
These are the improvements that were immediate: back pain gone, my extremities don’t fall asleep any more, the deep sleep came back; then I realized that the fatigue is much less, after some exercises and strains, the back pain was coming back but now it doesn’t come back any more! For me this is incredible (I was a stretching expert!) I couldn’t sleep supine because the extremities were falling asleep. Supine, I couldn’t put my hands on the belly because, in less than a minute, they would be asleep. In the morning, I don’t wake up feeling like a truck ran over me. The headaches are gone. I don’t feel the spasms along the back when I move my head forward. Things that were a part of me and that I had learned to live with and then…I find out that there is another life on earth!
The point is that there aren’t only the immediate changes, but the fact that the “Liberation”, allowing the blood from the head and from the spine, letting it go to toward the heart, makes it so the blood doesn’t become stagnant, because it is the stagnancy that causes the iron settlements which bring the inflamation and the relapses!
I am still taking Rebif but Dr. Salvi told me that, very soon, I willl be able to stop it.
Thank you, Doctor Salvi and thank you Professor Zamboni.”

Noam Hirsch - November 29, 2009
http://www.facebook.com/pages/CCSVI-nel ... 9997017782
Testimony letter that I sent to the authorities and that was made public on the CCSVI Multiple Sclerosis site.
My name is Noam Hirsch, I received an endovascular treatment done by Prof. Zamboni after which I felt reborn: the clinical proof that Dr. Salvi has, and my experience and perception, have demonstrated scientifically. Then I had a restenosis (that I was told it was going to be possible) and, contacting Sant’Anna’s hospital, I was told that now they can’t operate. And now I am feeling badly again: does the cause effect say anything to you?
The world watches with appreciation and we, again, are giving the worse of what we can give: disorganization, neglect and incapability of reacting in real time.
I can tell you that I have trouble understanding; Zamboni discovered another disease, CCSVI, he cured it for me, I had improved the quality of my life that I didn’t hope for because of the other disease, multiple sclerosis.
It is even evident to a stupid person that the time factor is ESSENTIAL. The disease starts to progress until we get unblocked. Why can’t he do it again? Even if I would see him do it almost in hiding, it seems to me that there is nothing that is not certified (International recognized CCSVI, 4TH Meeting of the uni0n Internationale de Phlebologie in Montecarlo taken by www.fondazionehilarescere.org).
Because I am a civil person, I communicate to you in advance that I am looking into finding a lawyer that is expert in medical issues to sue the Director of Medicine in the town of Ferrara, the General Director and the Director of the Sant’ Anna’s Hospital and all the members of the ethics committee for moral and emotional damages.
I am going to ask a million Euro to give to research.
Let’s see who is going to be faster; building a cause or you taking off the absurd block on the bottle. I was reassured by Zamboni’s secretary ( who tried to keep me calm) that the service will be authorised again in 2010, but this long suspension has created a very long list that, without the structural adjustments, will not be fixed in a short time. I hope that all of this is clear: that the problems have alread been solved and that I won’t have to attack you to get what is right in the right amount of time, but I am going to assure you that I don’t want to waste my time. If you would get informed about the benefits of the treatment for CCSVI, you would understand me: the time factor is ESSENTIAL.
Hoping that we are going to avoid a bad face in front of the entire world,
With regards.
Noam Hirsch

monicaxxxx - Mar 01 Dic 2009
http://www.ideamultipla.it/forum/viewto ... &start=220
I have been in the care of Doctor Salvi for 15 months and I had the angioplasty with great results from right after the surgery and my life has improved a lot. I don’t get tired as much like before and all the problems that I had before are lighter…I hope that, seeing the results, in a short amount of time, many other neurologists will move and will organize with the same weapons and that the country will help abbreviate the journey without putting ‘sticks’ in the wheels…because I believe too that this is the discovery of the century.

Renzo Guidetti - 03 Dic 2009
http://www.facebook.com/pages/CCSVI-nel ... 9997017782
“I was Liberated in May. Both Jugulars. My diagnosis happened in 1994 and since then I had tried so many therapies that didn’t help me avoid the progression of the disease. Obviously, I had to take Cortisone, Immoglubines, 3 years of Kousmine, 4 years of Interferons, 1 year of Antibiotics and 1 year of immunosuppressants.
On the 20th of May, my jugular veins were “Liberated”. In the following days, I did all the test and the usual exams but I was already feeling better:
-My hands and feet held in extended position could last longer
-I was speaking more clearly
-I had more strengh
Two days after the operation, the little positive signs became so numerous that I didn’t want to go to bed. At the end, I gave up but I couldn’t fall asleep because I was too euphoric. Everything was wonderful, but I had to wait for the morning to start being a part of the world and observe all the little, but numerous positive indications.
For the first time, I was sure to have finally taken the right road. After a few more days, it was evident that the procedure didn’t give us the results that we had hoped for and, at the following visit, Erica saw that the jugular veins had closed again. Since April, I have been waiting for another procedure and I hope that Dr. Zamboni has been figuring out a way to avoid the restenosis. For me and for so many others that have the word hope blocked in our mouths.

This is my friend Paolo, who I write to very often. He is doing very well! :)
Paolo Maria Ragazzi 13-Gennaio-2010
http://www.facebook.com/pages/CCSVI-nel ... 9997017782
If I am sleeping, please don’t wake me up because what I am going to tell you right now, then, is a dream!!!!
My name in Paolo Maria Ragazzi, I am 52 years old, I have a family, and I had a descrete sport background (in rowing and in fencing)
and I had a strong desire to live. In 1987 I was diagnosed with Secondary Progressive.
My world fell on top of me. I started progressing and I progressed to losing the use of my left leg, then my left arm and then my right leg, problems breathing and having extreme and chronic fatigue.
Incapability of moving and keeping a straight position without having to hold on to things. My left hand is almost always numb. They tried the botox treatment but with very little results.
I became aware of this project at the end of 2006 and, after the routine check ups, in June of 2007 I decided to have the procedure. A couple of hours after it, my breathing rythym got better and became regular and I didn’t have the heavyness of breathing, even when I was speaking and I wasn’t tired any more and I felt stronger. I was able to go to the bathroom and do normal things like dressing myself having to hold on to stable things a little less. I was able to stay in a still position for some time, around ten minutes at times, without holding on to anything and I was able to stay in a “contorted” position for a couple of minutes.
I started getting stronger, then came the capability of going to the bathroom to do the normal functions and get dressed without the need to hold on to stable things, then I was able to stay in a straight position with stable point for periods of sometimes 10 minutes and without stable points, in a “contorted” position, for a couple of minutes.
The satisfacion of being able to go out in the evening because I wasn’t tired the way I used to be, I didn’t have to rest as much in the afternoon and I was able to go back to the yoga lessons that I had stopped going to, I had the desire and the enthusiasm of reaching other goals because I had already overcome so many obstacles…
Now, I am doing some rehab to get more improvements, even if things are already quite satisfactory. No, I am not sleeping and this is not a dream!!!!! Ah, I apologize for the mistakes but I am writing with my ten fingers!!!! Thank you, Paolo Maria Ragazzi

2007 From Dream to Reality:
When the reality is better than the dream, well, then it’s better to be awake and be aware that what you are doing is wonderful! My name in Paolo Maria Ragazzi and I have come from being in the hospital at Don Gnocchi in Milano where, for 3 weeks, I had to undergo some diagnostic tests and some rehabilitation therapies.
The doctors found an improvement in the breathing process compared to 2006. And the test called MOC also showed an improvement. The therapists that were helping me in 2006 and during the previous years found less problems breathing and they saw that I didn’t have as much trouble speaking. I responded positivitly after the therapy sessions. Everything that happened confermed the impressions of the doctors and of the medical assistants. Talking about my relashionship with others: I was always cheerful, ready to play (chess and cards) and with others
Well…isn’t better to be awake?
Thank you and have a good day.

Two and a half years have gone by after the first intervention and in the meantime I continued to be checked and I continued the therapies suggestd by the doctors at the Don Gnocchi, and I have been able to keep stable physically and pysicologicly. A few months ago, I started having problems of mild incontinence . Professor Zamboni did another Doppler test and has once again raised the problem of stenosis formation. Yesterday I had the procedure again, in absolute absence of pain, and today I found an improvement of my incontinence...I hope this continues! This is my experience and I hope will give the strength to continue fighting to those who are already convinced, and I hope that I can alleviate the concerns to the people that have them and to give doubts to those that are totally
skeptical! A hug and thanks to all the people that are a part of the team of Professor.
PAOLO MARIA RAGAZZI....

MY ADDITION-EXPLANATION to the Density test:
The Computerized bone mineral density is a modern medical diagnostic technique of investigation, whose purpose is to investigate the state of bone mineralization. This is a test done to measure the density of bone mass, revealing degeneration of the structure.

Noam Hirsch - 20 Gennaio 2010
http://www.facebook.com/pages/CCSVI-nel ... 9997017782
“With hope for the future for all of us, I can tell you that I was Liberated again from the stenosis that happened again and that brought down my quality of life. As soon as the ethics committee allowed them to operate again and to take care of the people that were already treated (while it’s still the same for people that never had the procedure and that cannot be accepted as new patients) Dr. Salvi and Dr. Zamboni did the procedure again and I am back to feeling good, within the limits of what the disease gave me throughout the years. But the beast has been stopped again and this mechanism of cause and effect that is so evident should convince all the people that are members of the committee that don’t permit NEW procedures, and this can answer to the pseudo-scientists that, not only close their eyes and don’t study, but they also don’t read the publications. They ignore the existenc of this procedure. Then, they realize that there is proof and so they see the ‘lines and the polkadots’ or maybe they are needed to keep the cash flow to sustain their banks, but empty the accounts of the country, while we feel worst?
Who is going to defend us? The AISM? (Italian MS Society) But if they have read, studied, and understood and on their site, they mention arteries instead of mentioning the CCSVI of veins?? Congratulations!
We have to conquer everything by ourselves.
So let’s go to VICENZA!

Paolo Raccomini- February first, 2010-02-27
http://www.facebook.com/pages/CCSVI-nel ... 9997017782
These are my free thoughts. First of all, I am not a cardiologist, I am not a neurologist, I am not a doctor, I am not a techinician, I was a patient, maybe, I am still a patient…I don’t know, I don’t think about it any more because now I don’t have to think about it! The only thing that I can tell you is my actual state of health. I am one of the few that were Liberated. I can tell you how you can feel after you were Liberated. I don’t have to think and ask myself any more: “And if then I won’t be able to make it? Or if I will feel worse tomorrow? …if I will remain alone?…. help!!!!
Now, I can do it!”
More free thoughts- second part:
“Think that all the negative thoughts will only be a memory...and that you will live a new life, free of the obsession of not being up to the challenge. I don’t believe that this is all, I believe that it’s not only a Liberation of the body, but it’s of the mind too. Just like many people can think, what is bad in this?

Rita Tassinari - February 5, 2010
http://www.facebook.com/pages/CCSVI-nel ... 9997017782
"My name is Rita, I live in FERRARA and I am a Liberata too.
I have MS since 91 and I have been on the wheelchair for 9 years but, thanks to the operation, I got back many different little things and this happened right away.
It does feel like a real Liberation…I didn’t have the typical stiffness, without pains, my vision got clearer and all the pains of the last 4 or 5 years are gone. And now that 18 months have passed, I didn’t progress, everything stopped and I don’t have any type of pain. On Wednesday I went to see Dr. Salvi and he was very enthusiastic. It is the first time in so many years of disease that something like this is happening and this is happening without ruining my liver and my other organs with heavy drugs. I wish that we could “liberate” the beaurocracy very soon.
Ciao,
Rita

Ciao Elvezia and Ciao Alessandro, I hope that I will explain myself well. Having to make a testimony makes me nervous.
I was one of the first Liberata (January 15th, 2007) and I had to redo the Liberazione because one of the jugular veins didn’t want to stay open. But I can tell you this: in the months after the liberation I was feeling really well, then I wasn’t feeling too good and I went back to Ferrara and thanks to the echo doppler, we understood the reason why I wasn’t feeling well, so the correlation is clear.
And this has been a big relief: because it is a stupid vein that we are talking about, not of the secondary progressive MS, this awful disease that even just pronouncing the name makes you anxious. We are talking about a stupid vein that is outside the cranium and that can be enlarged and, in the future, it can be stented and even changed. At the first visit, I remember that the Professor told me: for as long as your veins will stay open, you will be ok.
I am a complicated case and I am quite “particular” but, as you can see, I am here with you because I know how I feel when my veins are not open. I need one of the jugulars to stay open: I got the other two so I will never give up!!!!
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Postby alanbrowne » Fri Mar 05, 2010 4:01 am

costumenastional wrote:Alan, it s only normal to feel like this mate. Your hopes and fears apply to all of us.
Having said that, i think money are well spent in cases like this, as long as one can afford it.
What if you pass? Wont you regret it? On the other hand, if you go for it you ll know that you did your best. All these may sound too plain and simple but... it is plain and simple.

Do it... and you ll take it from there.

I wish you my best.


Hi,
Thanks for the words.
I know exactly what you mean, I'm fortunate enough to be in the position where I can afford the treatment.
And you're right, this is the kind of opportunity that I simply can't not try.
Here's to the end of the month :D
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Postby costumenastional » Fri Mar 05, 2010 4:13 am

Alan, my main concern is if there is stenosis to be found in my veins.

Did you have yours already checked somewhere?
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Postby Leontien » Fri Mar 05, 2010 4:15 am

When are you sceduled? I'm going to Frankfurt on march 30 and since I know the exact date I'm just as nerveous as you although I've read every single thing about CCSVI and noticed all the succes stories...

I think I'm afraid of not being diagnosed with CCSVI, so my hopes of a better life will float away. But I think most of us have that fear!

Just a couple of weeks and we will know!!!

Maybe I'll see you there :D
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Postby Leontien » Fri Mar 05, 2010 4:16 am

costumenastional wrote:Alan, my main concern is if there is stenosis to be found in my veins.

Did you have yours already checked somewhere?


Same time, same concerns :wink:
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Postby costumenastional » Fri Mar 05, 2010 4:23 am

Good luck to you too Leontien.

Please keep the rest of us posted if possible.
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Postby alanbrowne » Fri Mar 05, 2010 4:23 am

costumenastional wrote:Alan, my main concern is if there is stenosis to be found in my veins.

Did you have yours already checked somewhere?


No, not yet, have appointment with Dr Vogl in Frankfurt at the end of this month.
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Postby alanbrowne » Fri Mar 05, 2010 4:24 am

Leontien wrote:When are you sceduled? I'm going to Frankfurt on march 30 and since I know the exact date I'm just as nerveous as you although I've read every single thing about CCSVI and noticed all the succes stories...

I think I'm afraid of not being diagnosed with CCSVI, so my hopes of a better life will float away. But I think most of us have that fear!

Just a couple of weeks and we will know!!!

Maybe I'll see you there :D


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 !!!
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Postby sbr487 » Fri Mar 05, 2010 4:27 am

Today morning I read on facebook (CCSVI India group) about Donald's wife got the procedure done in New Delhi and he reports that she has been doing fantastic after the procedure. I left a note requesting him to log the story at tims ...
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