New here, waiting for CCSVI surgery

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

New here, waiting for CCSVI surgery

Postby greyman » Fri Dec 11, 2009 12:32 am

Hey all
I'm new here. Of course I too suffer from MS. I'm 28 and living with the disease 11 years already. I somewhat walk, work, walk the dog, have a beautiful wife and 5-month son.
And I'm from Poland.
A week ago I visited dr. Simka in Studzionka to have my jugular veins examined. It turned out that like 90% of MSers I have blockages there. In both of them. Not typical, though - I have some kind of "fans" which cause blood travel both ways without any regularity. Although dr. Simka said that he saw such anomaly for the first time, he was pretty sure that this is the cause of my MS.
So now, I'm sitting on tenterhooks and waiting for his phonecall with a proposed date of further diagnostics and the surgery itself. I can't wait.
Br,
Adam
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Re: New here, waiting for CCSVI surgery

Postby CureIous » Fri Dec 11, 2009 12:55 am

greyman wrote:Hey all
I'm new here. Of course I too suffer from MS. I'm 28 and living with the disease 11 years already. I somewhat walk, work, walk the dog, have a beautiful wife and 5-month son.
And I'm from Poland.
A week ago I visited dr. Simka in Studzionka to have my jugular veins examined. It turned out that like 90% of MSers I have blockages there. In both of them. Not typical, though - I have some kind of "fans" which cause blood travel both ways without any regularity. Although dr. Simka said that he saw such anomaly for the first time, he was pretty sure that this is the cause of my MS.
So now, I'm sitting on tenterhooks and waiting for his phonecall with a proposed date of further diagnostics and the surgery itself. I can't wait.
Br,
Adam


Hey welcome Adam! That's the good part about staying up late here, get to catch our European counterparts when they post :) It's interesting to hear how many different anomalies are being found in malformed, twisted, membraned, stenosed and improperly valved veins, specifically in MS patients. Please keep us appraised of your progress, it is very exciting to hear from new people and we are very happy for you!

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Algis » Fri Dec 11, 2009 12:57 am

Hi Adam

Welcome among us. I would definitively trust Dr.Simka for his prognosis regarding CCSVI!

Best of luck; please keep us informed :)
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Postby ErikaSlovakia » Fri Dec 11, 2009 1:09 am

Wlcome, Adame!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby jay123 » Fri Dec 11, 2009 6:38 am

Interesting problems. This looks like an example where the doppler test is more effective than the MRV, I believe that this wouldn't be seen in an MRV would it? Hopefully Dr. Z's doppler techniques will become a standard technique to all technicians.
A matter of fact, in fact this reminds me I am going to send info to the ultrasound company my gp (who is also a cardiologist) uses.
They did the heart tests on me when I put the poison (novantrone) in my body for a little while in a futile attempt to beat this disease!
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Postby Pepe » Fri Dec 11, 2009 10:26 am

Welcome Adam,

Keep us reporting... please.
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Postby greyman » Fri Dec 11, 2009 11:29 am

Hi!
Thanks all for warm welcome.
I surely will keep you posted about my progress towards the procedure. However some doubts have arisen in my head when I read through some threads here, especially Radeck's...
Adam
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Postby ozarkcanoer » Fri Dec 11, 2009 11:42 am

Greetings, Adam, I am very glad you have joined us. The more stories we hear the better. And the more people advocating for CCSVI the better !!

ozarkcanoer
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Postby esta » Sun Dec 13, 2009 10:19 am

Hi all, I`m a newbie too!
Greetings from Canada...I`ve had MS forever it seems. I`m a typical bookcase...the great news is I`m heading for Polkand with Dr. Simka in June 2010, I just got the news yesterday.
I`m 60 and had my first sympton when I was 24. diagnosed at 30 blah blah blah. I`m sooooooo excited, yet fearful of telling too many people for fear of him getting shut down also.
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Postby greyman » Thu Dec 17, 2009 1:45 am

Hey!!
Dr. Simka has just called me and said that my procedure is scheduled for Jan 6 2010. It'll be so quickly because I can't have the MRV done due to massive dizziness when lying flat supine. I know that the procedure itself is also done in this position, so I think that they'll have to totally anesthize me. But it's for doctors to decide.
Anyway I'm totally happy but a bit afraid, too. But that's normal, I think.
Rgds,
Adam
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Postby ErikaSlovakia » Thu Dec 17, 2009 2:23 am

greyman wrote:Hey!!
Dr. Simka has just called me and said that my procedure is scheduled for Jan 6 2010. It'll be so quickly because I can't have the MRV done due to massive dizziness when lying flat supine. I know that the procedure itself is also done in this position, so I think that they'll have to totally anesthize me. But it's for doctors to decide.
Anyway I'm totally happy but a bit afraid, too. But that's normal, I think.
Rgds,
Adam

Congrats!!! :D :D :D
Well, my procedure was done in flat position. It took 1,5 hours. I was fine all the time.
Let us know after how they did it with you.
You really do not have to be afraid. I know it is easy to say...
I only was happy, I was like 5 years old child before Chrismass. I just wanted my presents! :D
GOOD LUCK!!!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Johnson » Thu Dec 17, 2009 2:44 am

I don't know how I missed this thread (well, I do, but...)

I would like to welcome Adam and Esta too. Please do keep us informed, and don't forget the details!

Adam, that is Eastern Orthodox Christmas Eve, is it not?. What a great Christmas gift for you! Best of luck.
My name is not really Johnson. MSed up since 1993
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Postby greyman » Thu Dec 17, 2009 2:51 am

Johnson wrote:Adam, that is Eastern Orthodox Christmas Eve, is it not?. What a great Christmas gift for you! Best of luck.


Hi Johnson.
Thanks for the warm welcome.
Yeah, that's the Eastern Orthodox Christmas Eve, but as we - Poles - consider ourselves as central Europeans ;), we celebrate Christmas Eve "normally" i.e. 24th Dec ;). No, seriously 90% of Polish people are catholic, so 24th Dec stands.

Adam
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Postby Johnson » Thu Dec 17, 2009 3:07 am

I suspected that I was wrong, as I so often am. Laugh. That's what Google is for! I really do need to brush up on my geo/religio/political almanac.

Thanks Adam.
My name is not really Johnson. MSed up since 1993
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Re: New here, waiting for CCSVI surgery

Postby reg613 » Thu Dec 17, 2009 4:17 am

greyman wrote:Hey all
I'm new here. Of course I too suffer from MS. I'm 28 and living with the disease 11 years already. I somewhat walk, work, walk the dog, have a beautiful wife and 5-month son.
And I'm from Poland.
A week ago I visited dr. Simka in Studzionka to have my jugular veins examined. It turned out that like 90% of MSers I have blockages there. In both of them. Not typical, though - I have some kind of "fans" which cause blood travel both ways without any regularity. Although dr. Simka said that he saw such anomaly for the first time, he was pretty sure that this is the cause of my MS.
So now, I'm sitting on tenterhooks and waiting for his phonecall with a proposed date of further diagnostics and the surgery itself. I can't wait.
Br,
Adam


Hi Adam,

I wish you the best in your surgery. Be sure to keep posting every step of the way.

I was thinking as I read your posts that those who have had the Liberation Treatment should take things to the next step and look backward in their lives to what may have caused the venous trauma behind their MS.

Are you the first child in your family? Did you have a bad birth? Forceps pulling on neck? Was your mother (and you) drugged during labour? Concussion as child? Tense shoulders during winter? Bad posture and too close to computer screen? Close to any source of electromagnetism which acts on iron deposits in brain? Subsequent MS reaction to viral things like mouth or lip cankers?

After the first MS attack where the immune system is programmed to attack myelin protein, a subsequent virus issue can confuse the immune system. Viruses are similar to myelin and as the virus is being attacked so is the myelin along nearby nerve paths. Entry through the brain-blood barrier is easy at this point.

It would be interesting to have a thread devoted to the cause and triggers of MS. They may sound different in how and where they happened but I'm sure they will be the same in theory.

The reason I suggest giving back in this way, is that MS needs to prevented in the first place. It's far better to prevent people from getting it than to fight for treatments after the fact. It also keeps the sense of community against this threat. The last thing we need is a competition to see who gets help and who doesn't.
reg613
 

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