Erika`s procedure in Poland

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

Postby ErikaSlovakia » Sun Nov 22, 2009 3:02 am

The same good thing happened to me this morning as two hours after my procedure.
I can describe it like when you change your bulb to stronger, so there is more light. It is not my vision, but the head is clearer again - I mean the brain fog is weaker. Of course I like it. It reminds me the first night in hospital. I liked it so much that I just was watching the room in hospital. It looked better than when I came. Now my room looks better. Nice.
It happens suddenly. You do not expect it, you do not think about it, it just happens without any warning.

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 ErikaSlovakia » Mon Nov 23, 2009 4:46 am

Hey Erika, Do you know if Dr Simka is TL is using the same stents as dr Dake? I understand ow dr dake has started to use smaller stents in patients and I am hoping TL and Dr Simka are also using smaller stents.

I wonder if they are speaking to Dr Dake about all this. As he has performed a few more procedures he might be able to pass on info that he has found.

I do not know if he uses the same stents. My stent is Genesis 8x29 mm.
Yes, Dr. Simka also uses smaller stents, he knows about the problem with pain in high jugular area. They for sure communicate together and discuss some cases. So, Dr. Simka also knows it is better to use smaller stents.
He told me my problem area was not close to any nerve.
I did not and I still do not feel any kind of pain or pressure. Nothing.
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 whyRwehere » Mon Nov 23, 2009 4:50 am

you are a lucky girl, then, Erika.
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Postby ErikaSlovakia » Mon Nov 23, 2009 4:58 am

whyRwehere wrote:you are a lucky girl, then, Erika.

Yes, I know, I am for sure lucky girl! :D
I would compare it to winning a lottery.
I think all the bad luck I had in my life turned to this good luck. Now it is 50:50.
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 MaggieMae » Mon Nov 23, 2009 7:42 am

Erika,

You are lucky but you also worked very hard to get the testing and procedure. For those who followed you from the beginning of your postings with all the ups and downs to get where you are today - you are an inspiration (as are many others on this forum).
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Postby whyRwehere » Mon Nov 23, 2009 11:26 am

What I meant was, that Erika was lucky not to have pain.
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Postby ErikaSlovakia » Thu Nov 26, 2009 4:49 am

More and more people ask me if I feel the stent or if I have some pain.
Just as whyRwehere wrote I am lucky, but I really do not feel anything at all. Not even very, very small pain or pressure - nothing.
I can do all movements. I do not even think about it.
No, I DID NOT have any pain even after the procedure.

Some people ask if it is possible to get pain later. Of course I do not know what the future brings, but I do not think so.

I know not all of us are so lucky, it also depends a lot on position of the stenosis.

The only pain I have had regarding the procedure is when I touch or push some of my bruises.

I also would like to say we are all lucky I do not feel the fatigue and I really have more energy, otherwise I would not be able to communicate with so many people so many hours per day.
It is only hard for me to read because my vision is not OK.
I still feel some MS symptoms of course.
This is only my day 23.

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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Location: Slovakia, Europe

Postby Algis » Thu Nov 26, 2009 6:10 am

Erika: have you had your eyes checked for cataracts? If you took Prednisone (steroids) it might build up very fast. I have been almost blind for 3 years until a ophtamo finally said it is worth to operate. I see now like when I was 20; plus the glasses for reading.
Maybe it is not your case; but I must tell you this :)

Na zdravie!

Algis
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Postby ErikaSlovakia » Thu Nov 26, 2009 6:43 am

Algis wrote:Erika: have you had your eyes checked for cataracts? If you took Prednisone (steroids) it might build up very fast. I have been almost blind for 3 years until a ophtamo finally said it is worth to operate. I see now like when I was 20; plus the glasses for reading.
Maybe it is not your case; but I must tell you this :)

Na zdravie!

Algis

Yes, I do not have it. I took "only" IV of steroids in hospital 4 times.
I do not take prednisone - the pills. My eyes are healthy "only" my optical nerves are not OK so there is nothing to operate.

:D But when I was 20 I saw better :D
I am 37 now. If I am lucky it will be fine in one year - who knows...
It is not a big problem but I do have some limitations, maybe I have even more headache these days because I use my eyes for reading more than 10 hours a day.
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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ErikaSlovakia, CCSVI

Postby fraser » Fri Nov 27, 2009 9:19 am

Hello,

Great to hear you are doing well. This is my first post to the website. I contacted Dr. Simka by email several days ago. Did you have to wait a long time before you heard from his office? I guess I have to be patient, I'm sure everyone is calling!

Did you have scans/MRI's done before you travelled to Poland (if you had to travel)? If so, do they tell you what scans they need? We live in Canada, so are hoping that they will tell us which scans to have done, send them to Dr. Simka, and hopefully they can tell us if my husband is eligible for the CCSVI procedure. He is PPMS, but his EDSS score is 2.5 (still in good shape). We don't mind travelling to Poland, but if we don't get the scans done until we are there, we are worried that he will say "No, this will not work for you". Just wondering if you can help us with a few questions. Thank you so much
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Re: ErikaSlovakia, CCSVI

Postby ErikaSlovakia » Fri Nov 27, 2009 9:38 am

fraser wrote: I contacted Dr. Simka by email several days ago. Did you have to wait a long time before you heard from his office? I guess I have to be patient, I'm sure everyone is calling!

Did you have scans/MRI's done before you travelled to Poland (if you had to travel)? If so, do they tell you what scans they need?

Hi Fraser!
My case is special as I contacted him at the end of JULY. At that time very few people in Europe knew about him - I mean patients.
His reply was fast. I went there after his holiday on August the 7th for Doppler. He did not have any team ready at that time. No MR machine had the special software they did not use Haccske´s protocol either. We had to wait for the syposium in Bologna anyway. It was on Sept. 8. After that he started to train his team and organise many things. I was only the second patient there. I went the secon time to Poland for my MRV as soon as the MR was ready. I had my procedure on November 3.

There are very different conditions now. Good thing for you is that they have the system but much more patients know about him, so yes, you must be patient. I also had to be. I decided for sure to have the procedure on July 23. I had the procedure on November 3.

No, I did not need any tests or CD´s or papers from Slovakia.
It was only my idea to have normal MRI of brain and C spine done 13 days before the procedure in my country. I thing it will be interesting for doctors here later. I did not have to pay for it in my country.

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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Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Cost of surgery

Postby Montana » Fri Nov 27, 2009 9:52 am

Ericka,
How wonderful...I am happy for you.
Can you tell us what the cost of surgery was including tests, doctors and hospital?
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Dr. Simka

Postby fraser » Fri Nov 27, 2009 10:00 am

Erika,

Thank you for sharing your story. In my neighbourhood there are many people from Poland. Would it be beneficial to have someone call who speaks Polish? I'm wondering if I might be able to find out more information faster.

I've heard that Dr. Dake, in California, charges $80,000 for the procedure. I've heard it is $5,000 with Dr. Simka. Did you feel really confident with Dr. Simka? There is such a big difference in price, and of course we want the best care for my husband, but we've also heard Dr. Simka is very good.

There is a place at the U.S. border, in Buffalo, that does the MRI's/scans, so will wait to hear if Dr. Simka would like something sent, and we can have it done there. Although studies are underway now, I'm just worried that we will have to wait years to have it done at home. Thank you again!
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Re: Cost of surgery

Postby ErikaSlovakia » Fri Nov 27, 2009 11:16 am

Montana wrote:Ericka,
How wonderful...I am happy for you.
Can you tell us what the cost of surgery was including tests, doctors and hospital?

Just to make it short. I was supposed to pay I think 2.000 Euro. I payed 1.400. I made 3 trips to Poland you can do it in one. I did not care I would even travel there 10 times.
Of course you have some extra costs like hotels, taxi, Clexane...
But it is not so much. Well for me it was but we have very low income in Eastern Europe. I can not compare it to Germany or UK.

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: 1125
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby ErikaSlovakia » Fri Nov 27, 2009 1:07 pm

Day 24 report.

I went to a supermarket today after one month.
I am sure it was not that bright inside and the colors were not so nice last time. I did not want to faint, my heart was beating normally all the time, I was not that scared, my breath was normal as well.
I am thinking about trying to walk in my quite street only straight without cane maybe even 100 metres.
I hope to have enough courage to do that tomorrow or on Sunday.

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: 1125
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

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