That is a one bad venous reflux caused by destroyed valve.

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

That is a one bad venous reflux caused by destroyed valve.

Postby Rici » Fri Mar 19, 2010 12:52 am

Hello
Now on my web page www.rici-ms.com you can actually see how a venous reflux looks like - click on link Reflux Ryszard W. It occurs at each exhalation. You have to look at the film a couple of times. I can tell you having no valve is a disaster. Before angioplasty on my right jugular vein and valve elimination I could walk 400 meters (200 without holding). Now with the reflux present it is very hard for me to pass even 5 meters with assistance. They wanted to help me, but unfortunately it is much worse now than before. It is only now that I really know what MS can do to you. Before it was really just a prelude to what I have to deal with now. I will let you know about my other symptoms next time. I am so tired and need to rest now.
Regards
Rici
Last edited by Rici on Fri Mar 19, 2010 1:58 am, edited 2 times in total.
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Postby frodo » Fri Mar 19, 2010 12:59 am

Thank you Rici, but at 10:00 AM, european time, on March 19, your web is not working
Edit: The problem is a comma in the URL. Remove it or click here:
http://www.rici-ms.com/
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Postby Rici » Fri Mar 19, 2010 1:07 am

Already good, tks Frodo !
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Rici
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Postby Johnson » Fri Mar 19, 2010 1:51 am

Rici,

Oh, man, I didn't realize that things had become so much worse for you. I thought that I had read everything you wrote, but my brain is not working well. I'm very sorry for your new troubles.

The reflux video is bizarre. And thank you for putting it on your blog.
My name is not really Johnson. MSed up since 1993
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Postby Rici » Fri Mar 19, 2010 2:07 am

I'm going now to the MR-V explore Vena Saphena Magna. How do I get back, I describe it more.
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Postby costumenastional » Fri Mar 19, 2010 3:01 am

Yes Rici. Please do, cause all i can see is your vein filling with blood.
Except if the first slide where absence of flow happens every time you inhale.
If this is the case it s unbelievable.
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Postby HappyPoet » Fri Mar 19, 2010 9:04 am

Oh Rici, I am soooooo sorry this happened to you. You are so very brave.

Thank you for sharing everything with us. Please keep us updated.

What does Dr. Simka have to say?

My prayers are with you.

~HP
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Postby moochsid » Fri Mar 19, 2010 9:40 am

Sorry if I am misreading your regrettable situation but is the inference here that angioplasty has exacerbated or caused this reflux due to the lack of valves ? If so is it not an issue that should have been flagged up pre-surgery by the doctors?
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Postby Johnson » Fri Mar 19, 2010 1:34 pm

moochsid wrote:Sorry if I am misreading your regrettable situation but is the inference here that angioplasty has exacerbated or caused this reflux due to the lack of valves ? If so is it not an issue that should have been flagged up pre-surgery by the doctors?


I don't like to answer for RICI (especially as my understanding is not complete), but I believe that Rici's right IJV was significantly larger in diameter than the norm (~6 cm?), and had a faulty valve to boot. The valve was thought to be causing reflux, and so was deliberately ablated during the angioplasty procedure. This has caused an even greater reflux, which has left Rici much worse off than before the procedure. He now needs to have a vein taken from his leg, to be transplanted in his neck to stop that pathology. He needs help financially, so if everyone who reads his story could send him a hundred, or 50, or 10 dollars, or what they can afford to help him pay for a much more expensive procedure, it would help Rici, and ultimately, everyone - by helping to further the knowledge base around fixing our venous problems. Maybe instead of donating to the MS Societies, we can send those contributions to Rici - it would probably do a lot more to furthering our cause than the paltry amount that the MS Societies are putting towards CCSVI research.

Check out the video of his reflux on his web page. It is scary. Click on the Reflux Ryszard W. link.

edit - link
Last edited by Johnson on Fri Mar 19, 2010 6:10 pm, edited 1 time in total.
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Postby muse » Fri Mar 19, 2010 4:26 pm

You’re right Johnson, if possible please help Rici he is one of our pioneers & he has already done a lot to push CCSVI, thanx!
Best
Arne http://www.csvi-ms.net/en
p.s. That’s no fraud, Rici’s story is true!
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Postby cheerleader » Fri Mar 19, 2010 6:09 pm

Rici-
I am so sorry for this complication! I truly wish you well. I spoke with Dr. Schelling in Bologna regarding venous reflux, and he was very concerned about this possibility of "venous back jets."

I have a couple of questions, maybe you might know. Wouldn't the fact that blood is refluxing indicate blockage further downstream, closer to the heart, maybe in the azygos vein? Does Dr. Schelling think this reflux is due to a heart defect? What does he think is causing the blood to surge upwards from your heart? I wonder if he has addressed this with you. We haven't seen this in other MS patients- but it may be in issue in some, if not all. Also, in his paper, Dr. Schelling suggested complete removal of the jugular vein in this instance of venous back jets. Has this been suggested to you?

please keep us informed.
all the best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: That is a one bad venous reflux caused by destroyed valv

Postby frodo » Sat Mar 20, 2010 12:44 am

Hi again Rici,

Have you tried to contact Ashton Embry at Direct-MS? Their society has a fund for research that could be applied for cases like yours.
www.direct-ms.org
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Postby Perky » Sat Mar 20, 2010 2:26 am

How awful, to end up worse than you were before the procedure! I am so sorry Rici and I wish you all the best.

I feel a lot better about my decision to 'wait and see' and not go abroad for treatment now.

Who did the procedure? And why aren't they putting it right free of charge? I am beginning to feel that some people are exploiting CCSVI to make money from PWMS.
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Postby Rici » Sat Mar 20, 2010 3:22 am

Johnson wrote:
moochsid wrote:Sorry if I am misreading your regrettable situation but is the inference here that angioplasty has exacerbated or caused this reflux due to the lack of valves ? If so is it not an issue that should have been flagged up pre-surgery by the doctors?


I don't like to answer for RICI (especially as my understanding is not complete), but I believe that Rici's right IJV was significantly larger in diameter than the norm (~6 cm?), and had a faulty valve to boot. The valve was thought to be causing reflux, and so was deliberately ablated during the angioplasty procedure. This has caused an even greater reflux, which has left Rici much worse off than before the procedure. He now needs to have a vein taken from his leg, to be transplanted in his neck to stop that pathology. He needs help financially, so if everyone who reads his story could send him a hundred, or 50, or 10 dollars, or what they can afford to help him pay for a much more expensive procedure, it would help Rici, and ultimately, everyone - by helping to further the knowledge base around fixing our venous problems. Maybe instead of donating to the MS Societies, we can send those contributions to Rici - it would probably do a lot more to furthering our cause than the paltry amount that the MS Societies are putting towards CCSVI research.

Check out the video of his reflux on his web page. It is scary. Click on the Reflux Ryszard W. link.

edit - link


Many thanks Jonson

muse wrote:You’re right Johnson, if possible please help Rici he is one of our pioneers & he has already done a lot to push CCSVI, thanx!
Best
Arne http://www.csvi-ms.net/en
p.s. That’s no fraud, Rici’s story is true!

Many thanks Muse
Rici
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Postby Rici » Sat Mar 20, 2010 3:36 am

cheerleader wrote:Rici-
I am so sorry for this complication! I truly wish you well. I spoke with Dr. Schelling in Bologna regarding venous reflux, and he was very concerned about this possibility of "venous back jets."

I have a couple of questions, maybe you might know. Wouldn't the fact that blood is refluxing indicate blockage further downstream, closer to the heart, maybe in the azygos vein? Does Dr. Schelling think this reflux is due to a heart defect? What does he think is causing the blood to surge upwards from your heart? I wonder if he has addressed this with you. We haven't seen this in other MS patients- but it may be in issue in some, if not all. Also, in his paper, Dr. Schelling suggested complete removal of the jugular vein in this instance of venous back jets. Has this been suggested to you?
please keep us informed.
all the best,
cheer


Dear Cheer
Direct response Your question from Dr. Franz von Schelling:

" Dear Richard,

Dawson-fingers and Steiner-splashes, hallmarks of (venous) MS of the brain, are not caused by venous stasis or venous stenoses alone. In form, distribution pattern and manner of spread they ultimately betray a transmission of retrograde venous impulses along inner cerebral veins.
An MR scan in a paper of 2004 (Lancet 363: 368) has accordingly shown: Plain damming up of blood in inner cerebral veins creates just a diffuse pool of edema.
Dependent upon individual venous anatomy, venous blood can be lashed, or also pressed, back into the brain from any sufficiently pre-filled neck and chest vein. Enhanced pre-filling need not be caused by venous stenosis - it suffices that it be given in a moment at which neck or chest veins directly related to inner cerebral veins come to be compressed.
Please forgive my limiting myself to a few principal hints. Haake’s MRVs show: the actual conditioning of venous excess pressures invading the brain has to be elucidated for each patient anew.

Best,
Franz "

Regars
Rici
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