Going to Poland!!!!

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

Postby ErikaSlovakia » Sat Dec 19, 2009 9:50 am

Dear Jo,
I started with my LDN first time last November. LDN helped me SOOO MUCH!

I had to finish with LDN 72 hours before the procedure. I was scared to be without LDN, I believed I would feel terrible the day after procedure because I slept only 5 hours and I was without LDN - I was surprised I had no fatigue and I had a lot of energy. It was not normal for me.
As I was not taking any painkillers I started with my LDN 2 or 3 days after the procedure without any problem.

The energy was even better after stenting but I had some bad days between the days 34 and 37 and today again.
I felt OK in the morning. I have injected Clexane and took my pills. I started to feel weak after 10 am. I checked my BP in the afternoon. It was only 100/60 which is too low for me. I thing I made mistake. I still take 5 mg of Lisinopril - for my high blood pressure. It was mistake. I will have to start to check my BP again more often and stop Lisinopril. I felt quite strong fatigue again. Even the weather is against me - it is foggy, sky is dark again, it was snowing...
Well, but I knew I would have better and worse days after stenting. In spite of this I am sure I do not feel worse than before.
In my case I also must take 150 mg of Aspirin every day.
I have noticed that other patients take something else as well.
I am supposed to have my first post op visit with Dr. Simka in January.
To be honest I do not know if I will have to go there more often. As it is not so far for me as for you they might ask me to come again - I do not know, I will see.
It is good you have family in Germany.
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 Pepe » Sat Dec 19, 2009 11:20 am

Hi whyRwehere,

It is my fault. My English is so poor. I'll try to explain it again...


And did the interventional radiologist say they wouldn't suggest anyone else get done?


He said: "If your wife were my wife...I will not perform the intervention myself... because I never did this specific procedure... so...as I am in favour of doing the procedure... I would ask for doing it to a colleague who usually performs it...wherever he lives". He wanted to say the following: "Ask for doing the procedure to someone who usually does it...
In Poland? No problem...go to Poland. In Italy? No problem... go to Italy. In USA? No problem... go to USA. In our country I do not know anyone who does it... so that, go abroad in order to get it done..."

I hope you will be able to understand it now...

Thanks in advance for any suggestion in order to improve the grammar, the vocabulary and all these kind of things.

Pepe.
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Postby whyRwehere » Sat Dec 19, 2009 11:39 pm

Thanks for clarifying Pepe, I get it now. He's for it, but doesn't suggest you have it done by anyone, but those who have done it before...and all of this was "off the record," as we say.
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Some answers from Dr. Simka

Postby fiddler » Sun Dec 20, 2009 7:25 am

Here is what I posted to my blog yesterday, that might help answer a few questions:

More news from Poland
On Friday I received a reply from Dr. Simka regarding some questions I had asked a few days earlier:

* Q: I'm assuming that I can schedule the assessment and treatment (if appropriate) to happen all in one trip to Poland, is that right? Where will the assessment(s) and treatment take place (so I can choose the most appropriate hotel nearby)? How do I pay - are credit cards acceptable? A: I will send you detailed information regarding date, hotels, payments etc. in a proper time. The hospital is in Katowice, the nearby airports are in Katowice and Krakow.

* Q: How long should I plan to stay in Poland after the treatment date? What drugs will I be required to take after the treatment, and for how long? Is it necessary to do a follow-up check-up at your clinic? A: You should plan at least 7-days long stay in Poland (at least 3 days post-op).You will get all necessary prescriptions and instructions how to use medications, as well as if and when to come for a follow-up (all these depends on the type of operation and patient's characteristics).

* Q: You gave me the costs of the assessments and treatment, but it is not clear if it is necessary to have the Doppler as well as the MRV, or if an MRV removes the need for the Doppler. A: Doppler in our centre is the main diagnostic tool, while MRV gives some additional information, which is important during the operation.

* Q: Could there be any additional costs besides the ones you quoted in the previous e-mail? A: The pricelist, in general includes all costs, however it is not possible to predict which type operation will be needed in particular case before diagnostics.

Then I asked him if it was possible to have my visit scheduled for late April, giving me time to finish giving my courses and exams. He said that he would schedule my assessment/treatment for late April or early May.

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Pepe » Sun Dec 20, 2009 7:52 am

He's for it, but doesn't suggest you have it done by anyone, but those who have done it before...and all of this was "off the record," as we say.


Exactly. This is was what he said.
Regards,
Pepe.
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Postby Alica » Sun Dec 20, 2009 8:32 pm

colmmc wrote:I received this email today. and i can't stop crying I'm so happy,

Hello,

You are in the waiting list for "the liberation operation". The estimated time of the procedure is November 2010.

We will do our best to make the treatment possible earlier, but actually we receive more requests than we can manage in a proper time.

Send your next emails in English (automatic translators are useless)

Best regards

Marian Simka, MD

Thank you one and all for the info on this site.
Colm


How long have you waited for Dr. Simka's reply?
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Postby ErikaSlovakia » Mon Dec 21, 2009 1:32 am

Hi Colm!
Congrats :D :D :D :D :D
I am so happy for you!!!
So, it is your X-mass present!
Erika
Last edited by ErikaSlovakia on Mon Dec 21, 2009 6:39 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
ErikaSlovakia
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Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Postby broomdancer » Mon Dec 21, 2009 5:47 am

Hi Everyone:
Newbee here. Please be patient as this is my first ever post I only went on a computer 2yrs ago and then only for games & e-mails. My computer jargon is non-existent.
My husband was diagnosed with MS in 03 with PPMS. At this point has tingling in one hand, burning in his feet, leg spasticity (which is being treated with Botox and baclofen)His EDDS is 6.0-6.5 (self diagnosed). Not on any other MS drugs. Walks with 2 hands on a cane for very short distances. Looking into purchasing a scooter. However his attitude is wonderful. He never complains and does what he can.
My main reason for addressing this forum is to thank W5 for their airing of this procedure and giving us hope for the future and Erica and Mark and all of you that have given me so much information that now I am addicted to this forum.
We are traveling to Dr Simka in August 2010 thanks to you. This is the best present ever! Merry Christmas and the best New Year ever!!!
PS, My GP informed us that there were 8,000 requests for Buffalo.
Diana
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Postby Alica » Mon Dec 21, 2009 6:05 am

ErikaSlovakia wrote:Hi Alica!
Congrats :D :D :D :D :D
I am so happy for you!!!
So, it is your X-mass present!
Erika


Erika,

I'm still waiting for Dr. Simka's reply. So, no christmas present for me yet. Unfortunately. :cry:
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Postby ComfortablyNumb » Mon Dec 21, 2009 6:12 am

I got the reply fr Dr. Simka saying I was on the list for May 2010.

I thank you all for the sharing of information that has made this possible.

I won't be able to wipe the smile off my face until May rolls around (Hopefully long after). :D :D :D :D :D :D :D :D \

Cheers
Steve
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Postby Alica » Mon Dec 21, 2009 6:31 am

ComfortablyNumb wrote:I got the reply fr Dr. Simka saying I was on the list for May 2010.

I thank you all for the sharing of information that has made this possible.

I won't be able to wipe the smile off my face until May rolls around (Hopefully long after). :D :D :D :D :D :D :D :D \

Cheers
Steve


How long have you waited for Dr. Simka's reply? My waiting time is turning into weeks now.

BTW, I love your nick :)
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Postby ErikaSlovakia » Mon Dec 21, 2009 6:42 am

Alica wrote:Erika,

I'm still waiting for Dr. Simka's reply. So, no christmas present for me yet. Unfortunately. :cry:

Sorry, I made mistake, I wanted to type "Colm" not Alica.
I have edited it now. I am thinking of you so much that I even use your name anytime.
I hope you get the same mail as Colm soon, Alica.

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 2:00 pm
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Postby ComfortablyNumb » Mon Dec 21, 2009 6:42 am

After my first contact with Dr. Simka, 3 weeks ago he he asked me to contact him in 2 weeks and he would be able to schedule it then. I contacted him on Tues. and got my reply on the weekend.

I know it is a hard wait but be patient and it will happen.

Steve
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Postby Alica » Mon Dec 21, 2009 7:43 am

ComfortablyNumb

Thank you for your answer.

Did you call him or contacted him via email? I sent him my email from “gmail” and starting to be paranoid that it went straight into their spam box.
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Postby Alica » Mon Dec 21, 2009 7:50 am

ErikaSlovakia wrote:I am thinking of you so much that I even use your name anytime.


You're a doll. :D
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