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

Postby kinga » Thu Oct 22, 2009 11:04 pm

Daniel, as far I know procedure cost ten times less -about 10k zlotys=4-5k US dollars.The best You can do is contact Dr Simka and ask him ,because I'm not sure if conditions and price is the same for people from abroad...you can mail him,I'm sure he'll respond.But maybe way Cheerleader shows you will be better , cheaper and more comfortable and safer for you (follow ups and etc.) I would try this first if I were you.
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Postby kinga » Fri Oct 30, 2009 3:47 am

hi again everybody,
I owe you an update on how's going on with my case.....so it's gonna be more delay in my way to freedom,because ,of course, of money and paperwork problems (not a big surprise huh ?) Simka will try to do my MRV on public insurance, but we have to wait till New Year -no money left in this year's budget for diagnostics .While waiting for January,he'll have to figure out what will look the best on procedure papers,so no "paperhead" will stop us...
what concerns me more is that I have my spine surgery scheduled on January and I don't know how long recovery will take...maybe somebody had ruptured discs repair and can tell me how long it takes to be "usable" again after this procedure?
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Postby kinga » Fri Nov 20, 2009 1:19 pm

Friends!!!
Dr Simka invited me to MRV!!! I got email from him about it and it was for me like a thunderbolt out of the blue sky!!!
I don't know what happened,because it was No,No, Not this year for sure!!!! and then all of a sudden this email! I'm so glad anyway!
MRV showed problem with azygos vein-its blocked.I don't know whats next yet...if I'm supposed to pay for repair or not...but I will wait because I know he is extremely busy . If anybody have/had azygos problem please point me to some knowledge about it...I tried to locate azygos on the anatomic pictures but its still not clear to me -seems to be along spine and then where? do they do stenting in azygos or baloon? oh I'm so excited,sorry for messy post :D
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Postby Ernst » Fri Nov 20, 2009 4:12 pm

Very happy for you Kinga! and you must be exited.. I would. And, tell how your story goes. All the best,

- me from Finland
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 ErikaSlovakia » Fri Nov 20, 2009 11:36 pm

Dear Kinga!
This is great news! :D :D :D
I just remember from Zamboni´s study that with balooning only 4% of patients had restenosis. So, may be the will try it with balloning as well. I do not even know if it is easy or not easy, good or not good to fix it with a stent. I am sure Dr. Simka will take the best decision in your case.

GOOD LUCK!!!
Erika
Last edited by ErikaSlovakia on Sat Nov 21, 2009 1:40 am, edited 1 time in total.
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 LR1234 » Sat Nov 21, 2009 1:37 am

My preference is to have the balloon procedure first (if possible) to see how I get on. If I feel better and the veins don't close immediately then thats great, if the balloon doesn't work then I am prepared to have the stents.
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Postby 1_sindy » Sun Nov 22, 2009 10:25 pm

thank you for posting the address for a canadian dr who is doing the ccsvi or the study this such good news for so many people and with luck they will start looking at this very fast to help all with m.s hugs to all and the best of luck to all , my husband has his dr appointment Tuesday,i hope his dr is open to all this new treatments .
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Postby kinga » Mon Nov 23, 2009 6:44 am

I got an email from Dr S again which says that azygos blockage opening will be more complicated operation than jugular but won't need stents, baloon will be enough probably, and I need to sort this out in my head -some sort of thinking aloud-please correct me if I'm wrong somewhere in my thinking process :roll: and answer questions ...please...
1.Doppler showed turbulence,reflux and valves problem on both sides very low in my neck-Dr said that it looks like problem is hidden somewhere behind collarbone
2.MRV showed azygos vein blocked-jugulars fine...
So is that possible that Doppler findings in my neck are caused by blocked azygos?I mean azygos is much lower in the body...is it possible to cause flow problems on such long "distance"from heart area to neck?
Will procedure make valves to work normally?
I know there is discrepancy between Dr Z and Dr Dake about surgery methods and I would like to know if Dr Dake treated azygos with stents or just balooning was enough for someone? I would prefer one surgery than balooning every few months....
3.Is azygos opening more risky for patient and hard for surgeon than jugulars,is it taking more time?
4.I'm RRMS for about 10 years but almost disability free so far -is that due to problem ONLY in azygos? or rather iron issues,not place of narrowing is important here?
And again BIG pretty please!!! to those who had azygos opened...point me to place where I can find details,stories about this surgery ! Since I got Dr S message about "more hard and complicated operation" I 'm little scared...thank You so much for your time reading this boring and probably stupid :( post
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Postby IbRiz » Mon Nov 23, 2009 8:32 am

Hi all!

I now have an appointment with dr Simka.

I am going to visit him in Poland on december 7th to be scanned. Both doppler and MRV.

I really hope he finds something..... :?

Christian
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Postby ErikaSlovakia » Mon Nov 23, 2009 8:40 am

kinga wrote: Since I got Dr S message about "more hard and complicated operation" I 'm little scared...thank You so much for your time reading this boring and probably stupid :( post

I read somewhere it is harder and more complicated for doctors. I do not think it is more complicated for patient.
Dr. Zamboni had restenosis in his study in azygous only in 4% of cases, so I think the place of azygous and only 4% should tell that balooning is better and safer.
If I were you I would prefer balooning in my azygous. But Dr. Simka and Dr. Ludyga know for sure more.
I think they will see more regarding your jugulars during the phlebography - it means when you are on the table already.
They will only offer you the best possible solution and they will do it safe. They do not risk.
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 » Mon Nov 23, 2009 9:20 am

Thank You Erika,
I know I should trust them! But you know how it is...people are afraid of things, they don't know... .That's why I'm trying to gather info from those,who went thru this procedure.This forum is the only place I can find info about it that's why I'm bothering you all :) it's some kind of therapy for my stupid fears...
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Postby ErikaSlovakia » Mon Nov 23, 2009 9:50 am

kinga wrote:Thank You Erika,
I know I should trust them! But you know how it is...people are afraid of things, they don't know... .That's why I'm trying to gather info from those,who went thru this procedure.This forum is the only place I can find info about it that's why I'm bothering you all :) it's some kind of therapy for my stupid fears...

Ok, OK, of course I understand, just ask. You should feel well before the procedure and sure with what you do.
I hope somebydy will answer you. My azygous was OK, so I do not more.
I did not want to say you should or must trust them, it is just my impression from their work.
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
ErikaSlovakia
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Postby kinga » Mon Nov 23, 2009 10:07 am

Dear Erika I DO trust them,but DrS is very busy and I think he is shy :oops: and I don't want to push him too hard,asking endless questions :wink: since he is delicate man and my only hope ...and besides that,I feel terribly weak today,very msy,this is probably part of my today's dark thoughs :evil: tommorow will be better,I hope!
As always,I'm sending You best wishes from Poland
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Postby ErikaSlovakia » Mon Nov 23, 2009 11:13 am

kinga wrote:Dear Erika I DO trust them,but DrS is very busy and I think he is shy :oops: and I don't want to push him too hard,asking endless questions :wink: since he is delicate man and my only hope ...and besides that,I feel terribly weak today,very msy,this is probably part of my today's dark thoughs :evil: tommorow will be better,I hope!
As always,I'm sending You best wishes from Poland

Kinga, get LDN, it helped me sooo much against fatigue!
Incline your bed as well at least 10cm.
I hope somebody from this forum can answer your questions. I just can not remember anybody here with azygos problem. Yes, Dr. Simka is really busy.
It is very hard for me to manage everything - I sit 7-9 hours in front of the laptop and I am only a patient. I do not understand how these doctors do it.

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
ErikaSlovakia
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Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
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