This Is MS Multiple Sclerosis Knowledge & Support Community

Zeureka wrote: However, that Zamboni did the ballooning on his own wife as the first patient in the history of CCSVI (and she wasn't at worst status of disability either) makes me think that he at least strongly believed the risk of ballooning in veins to be minimal. Stents is another issue...and also completely new issues (unfortunately like Ricci...I'm really sorry for this) may still occur.

But problems did not as yet, it seems, occur in Zambonis patients that only got ballooning. And this after some years now.

And of course, there's the issue as well that ballooning may not even be a satisfactory way to keep veins open, given the rate of failure for ballooning that seems to be happening in veins...

But I do respect that everyone has their own personal decision to make and we all may decide very differently what that decision will be in terms of treatment decisions for our MS.

I also have to add too though that in clinical trials, there is a LOT more information known than this about the testing and treatment that will be undertaken. It goes before an ethical review panel first as well. This doesn't even have animal model data and absolutely no blinded participants or doctors. There are a lot of missing factors in this that clinical trials don't have.

Right. Restenosis is a risk I could live with...and bridge the period until the research on stents has moved forward. Zamboni has already repeated ballooning on some patients of his study in Jan due to restenosis. And they again feel better afterwards.

Of course a personal decision to accept that multiple interventions might be necessary. One can also wait until the stent research is coming to a better knowledge (in 2-5 years?) and hope 1 intervention will then be enough.

Hmmm, Marcs story below makes me think again...Thank you so much Marc for this!! And telling us the view of Dr Scalfani on balloning, stents + problems with pathologic valves.

Rici, do I understand right from your web-site under:"Zerstörung der rechten Jugularisklappe drohenden Komplikationen" that they placed you a stent in the right jugular in Poland, so they did not apply the "traditional surgical procedure" on your offending valve in the right jugular? = did not cut it out but squeezed it with stents to the wall? And that Schelling thinks this then potentially caused an imbalance in blood flow leading to your problem?

Or did I misunderstand sthg?

FYI Marc reports:
"Dr. Sclafani soon came in to explain his findings, which were that the right jugular was seriously occluded, and that although he tried with limited success to balloon it open, he didn't feel that it would stay open for very long. The options for addressing the abnormal valve that is causing the blockage are either the insertion of a stent, or a more traditional surgical procedure in which my neck would be cut open and the offending valve cut out. Neither of these options is particularly appealing, as Dr. Sclafani and I agree that until stents are designed specifically to be placed in the jugular vein, the risks involved in stenting the jugular are largely unknown and could be considerable. He suggested that the traditional surgical procedure might be the best option.

As for the obstruction in my azygos vein, Dr. Sclafani thinks that there is an instrument that he didn't have on hand during my procedure which he could use to reach the area of stenosis and balloon it open. This obstruction should remain open after ballooning, so we might decide to do another catheter procedure sometime in the near future."

http://images.google.ca/imgres?imgurl=h ... s%3Disch:1
shortly. I answer for all Yours questions tomorrow. I've got today message from my surgeon about wrongly made phlebography. Has to be chosen another vein instead of v.jugular. I need to made new phlebography for the missing distance, where these veins connect. I'm sorry
Regards
Rici

They have called me regarding MRV and I have to do it as soon as possible. Tomorrow I will book appointment for that. Dr. Schelling will have an interview with Canadian TV on March 22nd. He asked me if he could talk about my odyssey and if I could join them on skype during the interview.
Regards
Rici

Thank you sooo much Rici! And yes, Dr Schelling is our guardian angel !

Wish you good luck with the MRV and also the interview !!!! I look so much foward to seeing and hearing it! You are our CCSVI heroes ! Go on like this!

Steffi

If the valves in the right JV were missing or compromised (but not blocked), would MRV even show it? I'm wondering if an apparently normal MRV could result when a patient with missing jugular valves is scanned ...

So even in the absence of CCSVI, could transient blood reflux up into the brain cause MS lesions and damage, if valves are not normal?

And here's a sort of out-there question I've harbored for awhile now - could sneezing cause such backjets? I sneeze VIOLENTLY, several times, on most days, and I've often wondered if the spike in thoracic pressure this causes could be an issue ...

Note: I was scanned @ Stanford and no significant stenoses were found on that MRV. But my head still feels pressurized and almost swollen when I exercise vigorously, and after several hours of sleep as well ...

(Thank you Rici for your reports - I first encountered the idea of "venous MS" from an old paper of Schellings, before Zamboni's paper, and I corresponded with him briefly prior to y visit with Dr Dake - I agree he is a wonderful and intelligent man that we are lucky to have no board.)

Hello,
I would like to thank you very much for visiting my website ( www.rici-ms.com ) and your donations. I hope that with your help my problem will be successfuly solved soon. Thank you very much indeed.
Regards
Rici

zap wrote:If the valves in the right JV were missing or compromised (but not blocked), would MRV even show it? I'm wondering if an apparently normal MRV could result when a patient with missing jugular valves is scanned ...

So even in the absence of CCSVI, could transient blood reflux up into the brain cause MS lesions and damage, if valves are not normal?

And here's a sort of out-there question I've harbored for awhile now - could sneezing cause such backjets? I sneeze VIOLENTLY, several times, on most days, and I've often wondered if the spike in thoracic pressure this causes could be an issue ...

In case that sounds wacky, check out these:

Internal jugular valves are the only venous valves between the heart and the brain. Conditions such as coughing and other precipitating activities may result in retrograde cerebral venous flow because of the absence or presence of internal jugular valve incompetence, allowing brief transmission of high venous pressure and resulting in brain disturbance.

http://www.jultrasoundmed.org/cgi/reprint/21/7/747.pdf

The pathophysiology of primary exertional headache (EH) is unknown. Physical exertion is associated with Valsalva-like manoeuvres (VM). VM leads to increased intrathoracic pressure and reduces cerebral venous drainage. Internal jugular vein valve incompetence (IJVVI) leads to retrograde venous flow during VM with transient increase of intracranial pressure

http://www3.interscience.wiley.com/jour ... 6/abstract


I know that this issue has been discussed before - and been dismissed, since "CCSVI is chronic" and these "valsalva-like" spikes aren't chronic, they are transient damage ... but I think there is plenty of grey area between, and Schelling's work seems to support this.

Repeated minor spikes over time is chronic - who says the reflux must be constant and unwavering to cause MS like lesions and symptoms?

There is also a continuum of thoracic pressures - for example, perhaps poor sitting posture, sleeping position, etc and/or unusual physiology causes an increased thoracic pressure in the absence of venous stenoses. This would not show up in MRV (apparently valve incompetence requires special doppler tests), but would still result in CCSVI - perhaps more mild than those with seriously blocked jugulars, but serious nonetheless!

Related threads:

http://www.thisisms.com/ftopic-9863-day ... ar-15.html
http://www.thisisms.com/ftopicp-53518.html#53518
http://www.thisisms.com/ftopict-9698.html



EDIT: reposted on own thread, here:

http://www.thisisms.com/ftopict-10716.html

Hello
Just to let you know that soon on my website www.rici-ms.com you'll see a video showing the impact of blood reflux on the brain due to lack of venous valves. That causes extremely bad outcome. You will see exactly the result of the jugular vein valve absence. This film will be published there, so others can have opportunity to avoid similar complications. Take advantage of my experience, so no one will suffer like me.
Regards
Rici

I am anxious to see that Rici.

And first thing i am gonna do is ask that Colin Rose idiot what he thinks about it.
He is the one that says every one can live without one vein as long as it's pair is functioning.

This can be of tremendous help in the war with the nayasayers.

I hope the best for you my friend. I really do...

Sorry to hear this Rici! And I admire you for your courage how you say this! ...it makes me think...thanks so much for your thoughts to others while you are yourself in trouble!

I cannot say how much I hope they will cure you soon...Steffi

Hello
I know what are the consequences of this reflux.

Regards

Rici