We had good news and bad news

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

We had good news and bad news

Postby whyRwehere » Thu Nov 26, 2009 5:28 am

Yesterday, my husband went for a phlebography in Paris, with an interventional radiologist. For those who don't know, my husband had a doppler done with one of the doctors working with Dr Zamboni, and he told my husband that his left Jugular appeared absent. The good news was that the left jugular was operable. He had 3 places of stenosis, and the doctor was able to balloon them, but one will need further ballooning, as the correct balloon was not available at the time. I've looked at the pictures yesterday, and I am much happier to see blood flowing now.
This doctor was recomended to us, by the doctor who did the doppler, and she was at the Bologna conference. She was very thorough, which is why we also found out that my husband has other missing veins. Here, I will quote the doctor:
"(a) total absence of all the right and left pre sacral venous plexus which is exceptional.
Within 20 years of internal iliac venous system investigation, I never saw that.
I wonder if it is an acquired destruction by ms of if it is congenital and associated."
So, it is a bit of a shock, and perhaps explains why my husband has such trouble with his bladder.
It opens up questions though, are some people born just with a deformed vein, while others have an illness that ruins the veins? Lots to discuss and think about, but unfortunately, I promised to make some dishes for a meeting, so I have to go. Happy Thanksgiving, by the way!!
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Postby Needled » Thu Nov 26, 2009 5:40 am

Congratulations to you and your husband! Is he doing OK? Please send him my best wishes across the pond. Here's to a smooth recovery.
If I'm not mistaken, this is the first procedure in Central Europe? We've got Dake and Simka/Lydgeg (sp?) in Poland, but I think he's the first in Europe? Way to go!
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Postby BBE » Thu Nov 26, 2009 6:10 am

Needled ;) or in other words...the first in western europe. Because Poland is in central europe...
So I would simply say Zamboni`s team was first in Europe and Dr. Simka`s team the 2nd in Europe.
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Postby ozarkcanoer » Thu Nov 26, 2009 6:14 am

The good news is great. Maybe this great doctor will be able to make even more blood flow !!!

ozark
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Postby Needled » Thu Nov 26, 2009 6:56 am

BBE, I'm infamous for my lack of geography skills. :oops: Thanks for correcting me. Your explantion is much simpler. It's all good!
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Postby Ernst » Thu Nov 26, 2009 7:06 am

So the balloon operation was done in Paris? Did i get it right?

Happy for you, best wishes from here North :P
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby cah » Thu Nov 26, 2009 7:38 am

Hello whyRwehere,

this is really... great, on one hand, as there now is a possibility for diagnosis and treatment in France. But your personal case sounds not quite good, of course.

Have you already stumbled upon the french CCSVI forum on csvi-ms.net? Of course I don't want to lure anyone away from TIMS, but I know the favors of discussion in your mother language, esp. when it's about medical things. I can imagine that there must be some french speaking people who don't want or simply cannot discuss things in english.

Of course, there are some questions concerning your diagnosis and treatment:

- Was it paid by yourself, by insurance or something else (study)?

- If you paid it yourself, what where the costs?

- Will they treat foreign people? (You know, Paris is much nearer to the western part of germany than Katowice/Poland)

- If so, what's the number/address? :D

Best wishes from Germany

Cah
Last edited by cah on Thu Nov 26, 2009 7:40 am, edited 1 time in total.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby ozarkcanoer » Thu Nov 26, 2009 7:40 am

WhyRweHere... Who is the French doctor who performed the procedure on your husband ?? Does she/he prefer not to be identified at this time ? If you send me his/her credentials then I will add her to the BIG NAMES sticky.
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Postby mrhodes40 » Thu Nov 26, 2009 7:41 am

Wow, what a finding I am sorry it wasn't and easy thing they offered an immediate repair for. Gosh Why, I am glad you got a good person to do the investigation.

But no venous plexus, why what pattern is your husband? I think your question regarding the bladder is spot on! Wow. there has to be some form of drainage though was there collateral effort to take up the slack?

I'm sorry for the strange and worrisome findings. Hopefully they can think it over and perhaps offer a solution eventually. Sometimes the saphenous vein can be used to make new veins in other areas that need it.

WhyR. I realize you have not had treatment and it sounds like none is offered yet, but I wonder if anyone else thinks this would be worth noting via the tracking sticky just for additional documentation of gross abnormality. i.e. go ahead and make an entry as if you are waiting on treatment .

Do others think this is important for our data base? It certainly supports the model and gives us knowledge of another medical community getting on board and finding this.

plus no individual like that blogger Colin Rose can argue that this is "they wanted to find it so they inject the dye at different rates to make it appear there is stenosis". I mean the veins are gone--SPECIFICALLY ones important for nervous system drainage. It doesn't get any clearer than that.

Furthermore no one can argue tht perhaps the inflammation of MS caused stenosis somehow (which is not a good argument , but people offer it anyway) if a missing vein can be associated the same way a stenosed vein can that really clears up the picture.

Why I hope someone thinks of a way to help this...knowing what is up opens the possibility for a solution
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Paris

Postby jean-la-grenouille » Thu Nov 26, 2009 8:55 am

Hi,

I'm a french patient living in Lyon. I have an appointement next month in Paris with Dr Fanceschi (who works with Zamboni).
WhyRwehere, if you could tell me more in PM (about the doctors you have met), I would really appreciate.

http://csvi-ms.net/forum_fr is a brand newforum in french, made by a patient from Swisserland. It has difficulties to start, so don't hesitate to use it.

Waiting for the new publication,

best regards

Jean
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Postby Rokkit » Thu Nov 26, 2009 9:08 am

BBE wrote:Needled ;) or in other words...the first in western europe. Because Poland is in central europe...
So I would simply say Zamboni`s team was first in Europe and Dr. Simka`s team the 2nd in Europe.


And don't forget GiCi was treated in the UK, London I think, although unfortunately that was a one-off. At least for now.
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Postby ozarkcanoer » Thu Nov 26, 2009 9:10 am

I love this :

CCSVI : juste les faits, madame

ozark :D :D
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Postby zap » Thu Nov 26, 2009 9:40 am

"(a) total absence of all the right and left pre sacral venous plexus which is exceptional. "

Whoa ... have to wonder if this is something other MS patients might also have issues with ... whole new can of worms!
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Postby whyRwehere » Thu Nov 26, 2009 9:47 am

Thanks Everyone for your good wishes. My husband feels fine, but generally the same...he thinks he doesn't have much brain fog anyhow (although I disagree ;-) ). He did feel a bit sick when he stood up after napping, which could be related to the semi-fixed jugular. I consider that he has had treatment MRhodes, because one could not see the jugular before and now you can in the radios...the part of the jugular she wants to work on again went from .5mm to 7mm!! But, there is the more worrying area...what do you do when there is nothing there? Like you say, doing something to widen the collaterals might help.
Now I will try to answer some questions:

cah wrote:
- Was it paid by yourself, by insurance or something else (study)?

- If you paid it yourself, what where the costs?

- Will they treat foreign people? (You know, Paris is much nearer to the western part of germany than Katowice/Poland)

- If so, what's the number/address? :D


We are insured in France, and so it was a combination of the French security system and our mutuelle (extra insurance you pay for).
I will have to ask the doctor if she wants to be named and if she will treat the out of towners. I am not on the French forums, because my French is really lousy, but I said to Fred on the Arsep forum, that he could translate for me what I write here.
Oh, I can't remember what else I wanted to say, sorry, but I have had a mega busy day and will have another tomorrow. I'll read the thread again and see if I missed something important.
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Postby Mutley » Thu Nov 26, 2009 11:21 am

Best of luck to you both WhyRwehere!

PS, can someone explain to me what role that a pre sacral venous plexus usually has?
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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