From the perspective of a fourteen year old

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

From the perspective of a fourteen year old

Postby Vonna » Wed Mar 03, 2010 12:45 pm

Hi all, my daughter just wrote this , and is sending it to all her friends and putting it on her message boards. I thought I would share what she is doing to get the word out.

She must have a mom who researches or something.

Please overlook her errors, as she did her best.

Where to start.....

My mom has Multiple Sclerosis. MS is something that throughout the years damages ur body more and more til you basically lay in bed all the time with pain. There are many cases in which people have gotten so bad that they have tubes sticking in and out of them to help them with living. My mom is no where near that bad. She can still get out of bed for a lil while if she sets her mind to it. She misses a lot of church services though and she can't really spend a lot of time doing the things that most mothers can do to help her family (I don't mind it though, I juss don't want her to be in pain) But I do know another lady who is a lot worse than my mom. When she can walk one step with her walker, everybody applauds like they would for a child who just took her first step. She is always in bed and though many times she doesn't complain in words, you can see tears in her eyes and her expressions make me wanna cry, too! And she doesn't even have it the absolute worst. They're are some out there who literally they're only way of communicating with you is to move they're eyebrows and such. I would do anything to help all those who have MS be able to live with the advantages that I have.

For years, doctors have had no idea what causes MS. They only know what goes on in the body when you have it. There have been many "solutions" and "medicines" for MS. None of them, if you looked into them, have proven to be helpful, in some ways even more harmful!

Dr. Zamboni is a vascular surgeon (has to do with the veins) who developed a neurological disorder some years back. So he can't perform surgeries, but he still works in a hospital. Well, his wife developed MS and when he found out that they didn't know how MS was caused, he decided to study it. When he found out what kinds of things develop while having MS, he began to take MRI's and study a theory that he had. He studied those with MS and those without it. He found that there was a blockage in the Jugular veins (veins in the neck) only in the patients that had MS. He calls it CCSVI! Chronic Cerebral Spinal Venous Insufficiency

It really makes sense. When my mom first told us that she had MS, she said that most of her body was numb. Have you ever been numb in your foot? We say our foot fell asleep, but if we move our foot around for a little bit, the numbness goes away. This only happens if we get in a certain position where the blood can't flow through our body. So...numbness is caused by not having blood in a certain area. So, if there's a blockage in the jugular veins and the blood can't get through to the rest of the body then that would cause numbness, right? Another thing is that my mom is anemic. But that never made sense cause she should have plenty of iron. But when the blood can't through the jugular veins, then it back-tracks. Isn't that the best way to have iron left in your brain? So she shows up anemic. So if all this blood is in your head, and your veins are full, but can't stretch because your skull is in the way wouldn't there be some kind of damage? My mom says that she has these head aches in the back of her head. And that would make sense if there's that much blood in the veins in your head. Whenever she gets these head aches, she asks us to warm up these hot pads that we made for her. The hot pads always seem to help a lot. Why? Well, if she puts the hot pads at her neck that would make the blood thinner to where it could get through a little. So, there are tons of things about CCSVI that make sense.

So he shared this knowledge with some neurologists and they pay attention right up to the end when he offers a solution to MS. He tells them that the only thing that has to be done is a simple surgery where they put a balloon in your jugular veins and open em' up. Of course, the neurologists who he shared this with were not too happy about it. They didn't want a simple solution. They wanted something that would make them money not make them lose their jobs. The Media is the same way. The don't want to advertise CCSVI because they don't want people who invest their time in MS patients to lose their jobs. So instead they advertise TYSABRI, which makes me sick. TYSABRI is one of those "medicines" I was talking about earlier. People have died from taking it, because you can develop PML, which is deadly.

So I know that I'm only 14, but I want to find some way to help with spreading the word. We're working on doing a MS walk for CCSVI research. Here's my mom's website, so you can learn more. And please spread the word, even if you don't know anybody with MS, because the Media won't! And you can sign the guest book here if you want!

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Postby youbetcha » Wed Mar 03, 2010 12:57 pm

Vonna - your daughter is a very special young lady who obviously cares alot about her mom. God bless her and the rest of your family.
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Postby CRHInv » Wed Mar 03, 2010 7:12 pm

Bless her heart! Thanks for sharing that Vonna.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby 3girls » Wed Mar 03, 2010 9:00 pm

What a great kid! Thanks for sharing this.
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Postby Lelo » Thu Mar 04, 2010 1:33 am

I can hardly write this comment. My eyes are filled with tears.

I now by my 4 children, it´s hard to have a dad with ms. :cry:
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Postby costumenastional » Thu Mar 04, 2010 7:11 am

This kid deserves the best for herself and her parents.
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Postby magoo » Thu Mar 04, 2010 9:00 am

That is incredible. Kids are such a blessing:)
Since I had my CCSVI treated my two boys have been so happy to have their Mom back. They make comments all the time about the things I can do now. My older son (10) wrote a paper in school about a cure for MS. My younger son (8) has stopped being so anxious and the dizzy spells he's been having for years have disappeared. Our kids are so in tune with us. I feel I've done something good for them by pursuing this.
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby capegirl » Thu Mar 04, 2010 9:25 am

Thanks Vonna for the letter. I is just amazing what kids are thinking and what they are seeing. I have two 15 year old girls and this letter from your daughter made me think about what they are seeing and how their life is at times. Your daughter wrote a wonderful letter. Thanks,

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Postby zinamaria » Thu Mar 04, 2010 10:59 am


Thank you for posting this beautiful testimony of love and care in the heart of your daughter.
I taught high school for many years, mostly math, but three years ago I did a long term sub (I no longer teach full time) for American Lit. Had I had your daughter in my class, I would have had her read it out loud to the class, so worthy of praise is it because of its sense of urgency and love for her mother; spelling has nothing to do with the heart or the brightness of mind; one writes because one needs to communicate something personal and important, and your daughter did just that.
Makes me miss my students!

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Postby Greenfields » Thu Mar 04, 2010 11:09 am

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Postby berriesarenice » Thu Mar 04, 2010 1:27 pm

So, so precious. Bless her.
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Postby Naija » Thu Mar 04, 2010 2:15 pm

That was wonderfully written. You are truly blessed to have such a caring and articulate daughter!! Its only a matter of time xxx
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Postby Astrid1961 » Fri Mar 05, 2010 1:14 am

Vonna, your daughter is incredable, she can tell it better than the most doctors/neurologists can. Everyone can understand what ccsvi is, because she explaines it in a way that it gets to you.

Thank her for that. And i know this will help a lot.

I did understand everything she wants to say and i am not very good in Englisch, i am from Holland.

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Postby Vonna » Fri Mar 05, 2010 1:31 pm

Hello all,
I just wanted you to know that my daughter is watching your comments with great interest. She is also the one working on this page: ... Walks.aspx

She is busy entering all the MS walks for the the entire United States! My other daughter is busy adding friends to my facebook page so that we can in turn invite them to the CCSVI Worldwide Victory group, and stay in touch with everyone.

They have already generated some interest from their friends who want to attend the walks!

If you would like to help with a walk in your area, let us know. I'll be explaining more about this when she gets finished entering all the information.
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