News from Rici, a polish patient being operated

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

Postby Edser » Sat Jan 09, 2010 6:37 am

Ana wrote:Unfortunately Rici has new problems. Dr. Simka already did the liberation procedure concerning his left jugular but Rici still had some problems so they checked his veins again and found out that his right jugular is far too wide, about 3 cm!!! It is too wide to place a stent and Rici says that it's rather a water-hose than a vein. You can see it here, also the stent which is in the other side: http://img35.imageshack.us/img35/4845/20091221rici.jpg

It causes a strong reflux and that's why Rici needs to be operated again. Maybe an open operation is necessary.

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 :D :D :D
Slainte Mo Chara
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Postby Algis » Sat Jan 09, 2010 7:18 am

Wish the best to Rici. I hope they can fix it without too much invasive procedure...
It is rather a large vein :0 Darn!
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Postby ozarkcanoer » Sat Jan 09, 2010 9:00 am

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.

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Postby Sharon » Sat Jan 09, 2010 9:27 am

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
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Postby cheerleader » Sat Jan 09, 2010 9:46 am

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
http://ccsviinms.blogspot.com
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Postby colapesce » Sat Jan 09, 2010 10:28 am

Best of luck, Rici. Hope all goes well for you!
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Postby Ana » Sat Jan 09, 2010 11:56 am

Sharon wrote: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


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.
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Postby Brainteaser » Sat Jan 09, 2010 6:00 pm

Ana,

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

Phil
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Postby muse » Sat Jan 09, 2010 6:21 pm

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
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Postby cheerleader » Sat Jan 09, 2010 9:08 pm

THis is translated from the German FB page
link

To all, all the best for the New Year:

I'm unfortunately not so good, the reason is the following:
I'm having problems with his right jugular vein: Although there has been already made in December a Ballooning, but the vein always goes again:
However, I have always had problems with the vein because it is much too broad 3 cm wide. It is so broad that you can not even put a stent, as usual (eg left side) for me.
On 4 January I was back in Katowice and it has been found due to the wide vein reflux strong there. The reflux prevents normal blood flow, so that my condition again deteriorated.
Therefore, I need another surgery - this time, the vein must be made narrower (possibly an open surgery). With me it's reversed so simple: My vein is too wide, it is easier to expand veins than vice versa.
Over my next surgery, I will inform you
mfG
Rici


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
http://ccsviinms.blogspot.com
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Postby cah » Sun Jan 10, 2010 12:43 am

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
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Postby cah » Thu Jan 21, 2010 11:43 am

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:

Rici wrote:The right vein is so big that its walls collapse and stick together (like a firehose without water). Therefore no stent can be placed. Open surgery is required. I'm in contact with Dr. Schelling, who gives me good hints. They found the big vein already with doppler examination (August 18th); but with catheter usage they noticed blood flow on the right side during the first surgery. Thus there was no intervention on the right side in the first surgery. Thank you for your good wishes. I will keep you posted. I'll send you the statement of Dr. Schelling if I'm allowed to (Cheerleader from TIMS was right).


and then

Rici wrote:Hello Folks,

I'm allowed to relay to you Dr. Schellings statement about my case:
Dr. Schelling wrote:"Central fever comes off in MS (like after arterial blockages or bleedings) through direct damage of the temperature center in the hypothalamus ( http://en.wikipedia.org/wiki/Hypothalamus ). In venous MS it assumedly can be caused by direct pressure impulses in hypothalamic veins or liquor surges in the third ventricle. The resolution of MRV is yet too low to distiguish such causes. Because your internal jugular veins hardly have functioning valves, pressure increases of the superior vena cava (especially through strong muscle work of torso and arms) can push unhindered up against the brain. With your activity this is even more to be suspected than in Erika. I've talked about this problem with Dr. Marian Simka in Bologna - I hope he works together with Dr. Zamboni in the complex of vein valve problems (Prof. Corcos wanted to go about this task years ago but seems to be boycotted.)."

Greetings, Rici
"There is only one good, knowledge, and one evil, ignorance." Socrates
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CCSVI

Postby Edser » Thu Jan 21, 2010 12:38 pm

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
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Postby Ruthless67 » Thu Jan 21, 2010 2:05 pm

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
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Postby cah » Sat Jan 23, 2010 2:21 am

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
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