This Is MS Multiple Sclerosis Community: Knowledge & Support

Good afternoon Ana & TiMS,
I wish Rici the best of luck.He is a fantastic gentleman.Myself & Anna were speaking to him on SKYPE a few day's back & he showed us his right Jugular vein (e-mail)Head up Rici
Slainte Mo Chara
Edser & Anna

_________________
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4

Wish the best to Rici. I hope they can fix it without too much invasive procedure...
It is rather a large vein :0 Darn!

The "jugular too big" is an interesting development. It's also interesting that it can cause reflux. It's too bad we don't have a list of all the conditions that have been discovered that can cause reflux because the common CCSVI idea is a stenosed vein. This could be fodder for a new thread.

ozarkcanoer

Ana - did Rici say if the right was always like this or has it increased in size since the liberation on the left jugular?

Interesting -- give him my best.

Sharon

THis has been Dr.Schelling's concern. He told me in Bologna that it will not be just about venous stenosis, it some cases it will be about reflux, what he called "back-jets" in his writings- he linked these backjets to Dawson's Fingers lesion formation. I hope Dr. Simka finds a way to deal with this issue. This is why doppler technology is essential in understanding CCSVI- it is not just architecture, it is flow.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Best of luck, Rici. Hope all goes well for you!

He said that they did ballooning on the right vein in December but always got a re-stenosis of the right jugular. I don't know whether the right jugular has had this size ever since before or whether it has increased after the procedure. I asked Rici in the German forum and hope he'll reply soon.

Ana,

Did Rici say or could you please ask him what triggered his concerns with the RJ?

Phil

Hi all together,
I put Rici’s message and image on our German facebook site. If cheer want do the same with the US fb-site Rici does allow it!
Best
Arne http://www.csvi-ms.net/en

THis is translated from the German FB page
link



This is the point Dr. Schelling reiterated- some MS patients will have continued reflux, even without stenosis. He said it must be studied. It is perhaps like jugular venous distension and a cardiovascular issue. This does not happen to all who are treated, only some. Sadly Rici still has reflux of his blood without an obvious narrowing. I hope Dr. Simka can discover why this is happening. This is why the doppler technology is essential.

I wish Rici well, and I wish us all more answers.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

What's a narrowing? It's a "normal" part of the vessel followed by a tighter one. So if there's a widened part followed by a normal part, in terms of the flow the effect would be pretty much the same, just scaled up a bit.

At least that's what I think.

_________________
"There is only one good, knowledge, and one evil, ignorance." Socrates

Rici asked me to translate this info as stand-in for Ana. (Hope I got everything right.)

Some answers to our questions about his case:



and then

_________________
"There is only one good, knowledge, and one evil, ignorance." Socrates

Good evening TiMS & Rici,
Look after yourself & try not to worry as Marian & the rest of the Dr's worldwide will find the answer.
Slainte Mo Chara
Edser & Anna

_________________
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4

Hi all,

I always find it interesting to jump on a word or a name that pops up in Tims and shake the tree alittle and see what falls out.

Dr. Leonardo corcos
http://www.corcosleonardo.it/eng/attivita_scient.html

PROXIMAL LONG SAPHENOUS VEIN VALVES IN PRIMARY VENOUS INSUFFICIENCY
http://www.servier.com/App_Download/JFa ... c05gb3.pdf

Quite a resume on this doctor.

Lora

As I didn't quite understood what's going on with Rici, I've skyped with him yesterday. So this is what has happened:

Before surgery, both of his jugular veins were examined. The widened right one was found as well as the stenosis in the left one. But in the right one they found some flow, thus only the left one was stented.

After that, Rici was better for about seven weeks. He could walk 400 meters without much help again, which he couldn't before procedure. (Other improvements are documented very well in this thread.)

Then things got worse again, he could only make tiny steps and could walk only a shorter distance. So he talked to the doctors in Katowice and was examined again. They found that the right vein was pancaked and therefore blocked.

As there are no such big stents for this widened vein (He said "Maybe for horses... " ), they tried to open it with balloon angioplasty. This worked well and he was better again for some time. But after a couple of days it worsened again as the vein collapsed again. In addition, there was this new symptom to his MS, a failure in the body temperature regulation resulting in phases of fever, lasting 3 to 4 hours.

Now Rici is looking for a surgeon which could solve the problem of his right vein permanently, rebuilding his vein and its valves. A surgery that isn't too complicated but yet never done before.

So the problems that Rici has aren't side effects of the procedure. On the contrary, for him this proves that the procedure is the right way as he was better when his vein was open and worse when it was blocked.

_________________
"There is only one good, knowledge, and one evil, ignorance." Socrates