This Is MS Multiple Sclerosis Community: Knowledge & Support

Has anyone received the following letter from Dr. S? Got this on Jan. 23, 2010:

Dear Sir/Madam,

At the moment the waiting list for endovascular treatment of CCSVI in EUROMEDIC centre in Katowice, Poland is over one year long. Therefore, we cannot put more patients at this list, since a several-year-long queue makes no sense.

We must prepare a new centre in order to manage more patients. You will be informed when such a centre will be ready, hopefully by the end of this year.

An estimated cost of endovascular treatment of CCSVI will be probably 10 000-15 000 US$

You will be contacted, regarding costs and dates, by the Administration.



Regards

Marian Simka, MD

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I just want to say how miffed I am at the tone of this letter.
It's sent to the many people (like me) who have written Dr. Simka and are awaiting anxiously and hopefully for his response.
He knows this. So why not spend more than a second or two writing back? And maybe a bit more compassionateley or professionally?

Yes, he's a very busy man, I understand that.
but this is a 'blow off' letter, and it sucks!:

Dear Sir/Madam,
I've got my schedule full for well over a year now, therefore,
I cant see you for a long, long...long friggin time! But when I can Ill let ya know! Oh, and its not gonna be 6 or 7 thousand, try 10 to 11 thousand. I dun told some of my buddies about the client potential here so we're looking into a new facility as well.
Peace out,
Marian

___________________

Let us not annoint a very nice business man just yet, he could have written this a bit more carefully or compassionetely. If your going to write a response and address it to many people who are ill, do it right and with some scrupels! Take more than a friggin second to write it!
Real easy to do that.

Regards,
Chris
SPMS 2006

Chris, your version of Dr Simka's letter did make me laugh!

I agree with your sentiments exactly, it is rather abrupt and the tone could be a lot better. Maybe it could be due to English being his second language?

Chris

What a bummer? We've not received the letter yet, but no doubt we will in the next few weeks.

Did you contact Dr Kostecki by any chance? We emailed him but so far havent received a response. Not sure whether they are part of the same team or not, but we will have to wait and see.

Back to the drawing board then.

Nx

I saw a similar mention of such a reply from s.o. in another topic/post in this forum this w-end (can't remember who and where). I thought in a way logical, if he is full to say he will contact people again as soon as wider facilities.

However, the new fees were not mentioned that clearly...hmmm...I guess they realise the service in the new clinic is not for Polish local people...most of them could certainly not afford them! A pitty it always ends up the same way...

I heard that in Nov 09 Simka still did the doppler for free... but if you have a larger staff you also need to invest. It could however have been expressed a bit more sensitive, I agree.

Dr Simka's English isn't great so I don't think this tone was intended. He is just so inundated with e-mails that it probably seemed easier to have a standard e-mail. I am sure he meant no offense.

$10,000 to $15,000 is nothing compared to what a US hospital would charge. I have heard that Standford was charging $80,000. Dr Simka is swamped. Take cheer's advice and reach out to local interventional radiologists where ever your live. We need more doctors than Dr Simka to perform the procedure.

ozarkcanoer

Yes, this is what I think. We are lucky he is great doctor! His medicine knowledge is much greater than the knowledge of English. He spends more time with patients and science than with writing beautiful e-mails.
He simply must pay some money to new staff. Or he does everything alone but cheaper and slower.
On the other hand I understand all patients and their maybe desperate situation.
I am sorry for him, I am sorry for the patients as well.
Erika

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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

Agree. Had a very modest impression, also from the way he started off the whole thing. He started this for research and wants to help.

By the way, he is not driving a Mercedes/BMW or Porsche, but a very modest OK car (I liked that since reflects a lot the mentality/situation - and this was a week ago). Important thing is it drives/works. The same for mine

And the same for us: important our veins will get fixed, so our basic motor circulation drives/works properly! The new fees will be required for investment in a new clinic and wider staff... and it's true that in US they can request up to 5-10x as much for the same intervention.

Yes, it is correct, I was sitting in his small car together with Steffi. By the way, it is still the same car as he had last August.
Erika

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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

I see nothing wrong with the e-mail at all.

I can't imagine the workload this guy must be under. He's the only one doing procedures right now. His e-mail address has been circulated all around the web as being the only one doing this type of thing, and he's been answering his own e-mails! There's probably 1000 people in his own list of patients right now and (tens of?) thousands more awaiting e-mail replies as to when they can get on his list.

I think it's great that he's involved with opening up a larger clinic to accept more patients. That means more people are going to be seen, and seen faster than he can do right now. Since the new clinic is going to be open by the end of the year there is little point in him adding people to a list that won't really mean anything at the end of the year. Why bother sending you a personalized note telling you that you've been scheduled to be seen in Nov 2011 when you could call the clinic in Dec 2010 to be seen in maybe Feb or Mar or any time earlier than Nov 2011?

Remember, this guy and his team there are the ONLY ones in the entire world doing this sort of thing right now. His name, phone number and e-mail address have been spread through every MS site and MS blog on the internet. There's no way anyone would have the time to respond to each and every person personally. He has more important things to do, like actually treating patients.

I think the e-mail was brief and professional. Imagine getting inundated with thousands of emails from around the world. Do you really think he has time to personally respond to them all? As the previous posters mentioned, English is not his first language.

_________________
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />

Simka is just one person and I am sure he does not mean to offend anybody with the letter.

Why are we expecting Dr. Simka in Poland to fix us all – is this a realistic presumption (?)

I still don’t understand why clinics are not set up in large hi-tech Western countries such as Canada, UK, Germany, Australia among other

Chris 1967,
easy for us not receiving this to comment, but for those of you expecting and hoping to soon be treated, it definitely could have used a softer tone to convey such dismal news.

And some of you bring up that the increased price is not that unreasonable by comparing it to what would be charged in the US--there is no comparison.
One, a lot of people here then would be covered by their insurance, and two, the issue really seems to be that Simka would need the money in order to expand.

Good evening TiMS,
I'd have to agree with LR1234,Marian appears to be a very quite person.I only met him when he done the Colour Dopler on me & even dough my Mrs(Anna) is polish there was very little talk.Sometimes silence is golden.He & his team know there work,so let's leave them get on with there work & we all can be thankfull for his efforts.Life is hard,as us MS people know & this man's life also has just got much harder.
Slainte Mo Chara
Edser & Anna

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Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4

Dr. Simka is a caring, concerned and very serious doctor. I've spent time with him in Bologna...he is a good man. He is overwhelmed. He just can't treat everyone that asks. I watched the same thing happen to Dr. Dake. And I'm sorry for his tone, but it is really more about the language barrier. I can't imagine responding to anyone in Polish....
My Jeff gets an average of 10 e-mails a day asking about his treatment, and he's had to send a "form" reply. I'm sure Dr. Simka's e-mail box is insane.

I know I sound like a broken record (that reference gives away my antiquity), but we need to find local interventional radiologists and vascular surgeons in our own home towns. This is the only way. Bring the research to your local universities. Book conferences with IR doctors, e-mail as many IRs as you can. There will be more research coming out in the next month, which will help. wishing you the best, Chris, truly. I'm sorry.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS