Poland

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

Poland

Postby kinga » Wed Oct 21, 2009 12:14 am

I don't feel right messing Erica's topic,so I decided to start a new one about CCSVI in Poland.I'm now Dr Simka's patient,so I'll observe his work and will share everything with You.I also would like to invite for discussion my polish friends who,I know, read this forum but are affraid to write in english (don't be silly-no grades here).
ok,so for today : as You know ,doppler usg showed very bad blood flow (amazingly bad as dr said),collapsing vein and malfunctions of venous valves on both sides of my neck.He said it looks like blocked vaccum cleaner's pipe-something is dancing in my veins just like ball in lotto machine...so I'm supposed to call Doc wednesday,he'll tell me when and where MRV will be done.If MRV will confirm this observations, we will discuss our options-for today ,accordingly to Docs words,I need at least two stents.I asked about baloon procedure,but he said it's useless in my case.And now about financial side of it,I think my polish friends will be interested; I may pay for it myself (no way) , or wait for trial study group (no one knows how long) or we can try to do the procedure "under cover"- insurance will pay for stenting needed for valves and underoxygenation problems, not for liberation from ms ...in my opinion it's not cheating,because those problems exists and have to be solved,but I'm not sure if "paper heads" from insurance company will go for it...hope they will.So it's not that bad at all,if "under cover operation" will fall, I'll wait for trial study ,no big deal,now I see light in the dark tunnel of ms will be easier to wait-wait for recovery and health,not for full disability I used to.I know I may be too enthusiastic about this,but I can't help it-hope gives me wings.It's possible my wings will be cut off someday,but i'm going to enjoy my months,maybe years of Light of Hope the new theory gave me.
that's will be all, folks
Wish You all the best,don't let your hope go away!
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Postby CRHInv » Wed Oct 21, 2009 12:28 am

Welcome Kinga! and yes, all polish friends welcome too! It is wonderful to share information and experiences. No one here is handing out grades.

I am so glad Dr. Simka was able to give you answers and hope. I know exactly what you mean about wings. I feel the same.

Again, Welcome! and Take care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby kinga » Wed Oct 21, 2009 12:48 am

Thanks Beth !
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Postby Ernst » Wed Oct 21, 2009 3:18 am

Keep writing, very interesting.. THANK YOU. Dr. Simka seems to be real expert with veins and very scientific, very good. In my opinion your undercocer-plan is not cheating --> there is problem in your vein, it needs fixing. All other is just bonus, very good bonus.
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 kinga » Wed Oct 21, 2009 5:40 am

hi Ernst ! I'm glad You feel the same about my plan...I hate cheating....I hope procedure will be possible without it.
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Postby Jamie » Wed Oct 21, 2009 5:56 am

Kinga,

Go for it!

Its not cheating, you are being treated for the disease. MS is simply a side effect that could be helped by treatment of the blockages etc.

Good luck.

Jamie
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Postby kinga » Wed Oct 21, 2009 6:03 am

Thank You Jamie!
one question is in my mind now...I'm sure the answer is somewhere on this forum,but maybe if I ask You guys it will be faster than looking up those hundreds of posts 8O ...why Zamboni prefers baloon instead of stents? I found somewhere his opinion that there are no dedicated stents for jugular veins...but I see US doctors use stents with succes,and Dr Simka wants to put them in my veins too....so I'm little confused
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Postby cheerleader » Wed Oct 21, 2009 6:27 am

kinga wrote:Thank You Jamie!
one question is in my mind now...I'm sure the answer is somewhere on this forum,but maybe if I ask You guys it will be faster than looking up those hundreds of posts 8O ...why Zamboni prefers baloon instead of stents? I found somewhere his opinion that there are no dedicated stents for jugular veins...but I see US doctors use stents with succes,and Dr Simka wants to put them in my veins too....so I'm little confused



Dr. Zamboni is able to successfully treat only patients whose veins remain open and patent after ballooning. 47% of all the jugular ballooning he has performed has needed to be redone at a year or so. As GiCi has explained, he would rather do the repeated ballooning. Dr. Zamboni does not want to use stents right now, and has his reasons-long term patency and function in the mobile neck area being 2 big ones. His team is looking into creating dissolvable stents or using open neck surgery. This may be many years away.

Some veins will not stay open even for a minute after ballooning (like my husband's) This is why Dr. Dake decided to use stents in Jeff and then many others. He always balloons first. Because of what Dr. Simka saw in your veins, he can tell already that the ballooning will not keep your vein open, and that a stent is the only solution. You can wait for an open neck procedure or dissolvable stent, or trust the many endovascular doctors that now use venous stenting and consider it a safe option. It's going to be your call. Talk to Dr. Simka about your concerns...

(stents have been a huge debate issue in the cardio world for 20 years now...open surgeons and endovascular surgeons are still debating which procedure is better. )
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Wed Oct 21, 2009 6:37 am

Kinga,

Great to hear! The insurance thing is a non issue if you ask me. You aren't fixing your MS, you're fixing occluded veins and bad flow. YOU'RE intent will be the benefit it may give you for your MS, but as far as being above board, you're above it! I used venous headaches and other codes to get my insurance to jump in and help, and lo and behold, I haven't had a headache, knock on wood, since my second procedure. So it actually worked exactly as it should have for the codes we gave the insurance company. The words Multiple Sclerosis never even came up.
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Postby Rokkit » Wed Oct 21, 2009 7:15 am

Kinga, please encourage your Polish friends to participate. I'm sure their English is a lot better than our Polish. The more the whole world comes together to talk about this, the faster we will all get answers.
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Postby kinga » Wed Oct 21, 2009 10:45 am

Thank You Cheerleader for explanation ! I'll trust dr Simka's opinion.


Thank You Loobie ! if it worked for you,maybe it will work for me too (with docs good will to fill the papers avoiding " MS " letters)


Thank You Rokkit ! " The more the whole world comes together to talk about this, the faster we will all get answers." agree with you! that's why I'm here-talking with You guys about it pulls my thinking "out of box",I can see things at a different angle,I'm learning from You...but I'm trying to be open for new ideas,and many people I know are affraid..
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Postby ErikaSlovakia » Thu Oct 22, 2009 11:01 am

Hi Kinga! Welcome!
I will write more about my second trip to Poland later. I had very busy three days, but I managed everything. I am very tired. I must sleep first!
Thanks for sharing info with us!
You are NOT cheating, you just must fix your veins!

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 kinga » Thu Oct 22, 2009 12:15 pm

Thanks Erika !
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Postby daniel » Thu Oct 22, 2009 5:58 pm

Czesc Kinga, welcome! I'm still trying to convince my doctors in Canada to look into CCSVI and get me tested... but if nobody budges in the next few months I might be heading out to Poland to see Dr. Simka. Do you have a rough idea about how much the procedure would cost? It must be cheaper than the $60-80k at stanford..
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Postby cheerleader » Thu Oct 22, 2009 6:09 pm

daniel wrote:Czesc Kinga, welcome! I'm still trying to convince my doctors in Canada to look into CCSVI and get me tested... but if nobody budges in the next few months I might be heading out to Poland to see Dr. Simka. Do you have a rough idea about how much the procedure would cost? It must be cheaper than the $60-80k at stanford..


Daniel-
volunteer to be tested using the new CCSVI protocol developed by Dr. Haacke-
http://www.ms-mri.com/
here is a collaborator in Toronto-
Jonathan Grynspan, MD, FRCP(C)
33 University Suite, Apt 2104, Toronto Ontario M5J 2S7, CANADA
(905) 577-9392
(905) 529-0268
j_grynspan@hotmail.com
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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