Letter from Dr Simka. It sucks realy

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

Postby Chris1967 » Mon Jan 25, 2010 4:49 pm

Perky - Glad I made you laugh, that makes me laugh.
listen to "I'm yours" by Jason Mraz, I love it.
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ngocky - Hi, I've contacted (either by email or telephone) doctors in Bulgaria, California, Poland and Italy. I am not scheduled for any appointments as of yet but am on 'the list' at Stanford, waiting for the other location in Poland and hopeful with the new Bulgaria thing.

I have to say, I do not like feeling like my future is in someone elses hands. What can ya do right? Stay strong and keep trying. You said it best; bummer.
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Zeureka - I agree, no question it's logical to hold future appointments under the circumstances. At the end of the day I expected a more heart felt mass reply is all. I dont expect him to share my pain or nothing, just dont add to it with the cold reply I waited weeks for.
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LR1234 - Word
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ozarkcanoer - shhhhh on 80k, I dont want them to hear that for obvious reasons.
I hear you on reaching out locally, we're trying and trying again until we are successful with a solid diagnoses and treatment plan.
I had an ultra sound on the neck locally just 3 or 4 weeks ago, my GP referred me to this vascular surgeon, Ill keep this short becouse it really peas me off, this cardio guy was so condesending and flippid, for a professional in health care he realy made me sick, anyway, he found some blockage on the left side via an ultra sound, his receptionist told us they would contact us with a future appointment. Never called us, no follow up and I have no interest in calling him or his office. If many of you heard how negative he was in regard to Zamboni, the liberation treatment and Euro-Medicine it would sicken you. Ignorant!

But I am with you, we need more doctors in our own area so we need to keep marching! We need to keep searching!
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ErikaSlovakia - Not asking for beautiful letters here, just an acceptable one, this one is not thus Im still looking.
You're only lucky if you've been liberated.
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dialed_in - I hear you for sure and there is alot to be thankful for, especially in recent months. I cant believe how much vigor and hope this new theory has given me. I am as grateful and thankful as anyone.

But I have to say, I didnt expect a personal email, just a professional one with a hint of compassion to take away for myself. I didnt expect a garbage reply which is what it was. We all have enough garbage. Furthermore, and to your point of him being over burdened; he is not burdened at all. He makes his own schedule and he signed himself up for this. He will not operate on me for free nor would I expect him to.
I do expect to be treated as a person, not some sort of desperate addict.

His bulk reply told me several things but it certainly didnt inspire me with hope or inspire me to feel sorry for him. It told me he's full, help is on the way and it will cost me.

That's all for now, my dinner is ready,
Thanks for reading and be cool everyone
Chris [/quote]
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Postby costumenastional » Tue Jan 26, 2010 12:33 am

Increasing the price says a whole lot to me.
Everyone knows that MS patients are not rich in general for reasons we dont have to talk about. By 2011-12 the prices will be sky high and we should all try to make the liberation happen in our country somehow. It is very difficult and most of us want to be tested by Simka in order to find a blockage for sure. But i feel that this is getting out of control.
What if someone flies all the way from the US and gets a negative result? What if CCSVI doesnt apply to all of us? I am for one economically devastated one year after dx. Do i want to find out if my veins are blocked? Yes. Do i want to pay a shitload of money to fix a tiny damage that may be normal? No.
I ll go wherever it goes, but i wont get crazy over this. I am newly diagnosed and my symptoms are manageable but people who have lived 10, 20 years with ms could wait a few months also.
Sorry if i offended anybody folks. All i am trying to say is that if ccsvi is indeed the reason MS happens it wont take long to become mainstream. It s a good thing to get a date from Simka or whoever but lets try to keep our shit together in the process.
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Postby Zeureka » Tue Jan 26, 2010 12:46 am

costumenastional wrote:I ll go wherever it goes, but i wont get crazy over this. I am newly diagnosed and my symptoms are manageable but people who have lived 10, 20 years with ms could wait a few months also.
Sorry if i offended anybody folks. All i am trying to say is that if ccsvi is indeed the reason MS happens it wont take long to become mainstream. It s a good thing to get a date from Simka or whoever but lets try to keep our shit together in the process.


I admit that also have the chance to look at this from a more calm view. I am not newly diagnosed, but relatively fine...lets say it's bearable in comparison to MANY other people... But I do understand the reaction of who is worse, there is this chance and it is logical that the sooner the better and patience is more difficult to handle (really noone can blame anyone for that...). I feel very sad for this situation. Indeed it should be possible and just normal to get treatment in our countries.

I am also still trying (managed to get an appointment with a Professor of the vascular Ferrara dep next week)...and lets see... he'll certainly tell me more about the political block. I'm very curious to see what he will say.
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Postby Pepe » Tue Jan 26, 2010 2:13 am

Chris,

My English is so poor to judge the tone of the letter...and my scientific bio-medical knowlegde is less than poor: it is nothing at all, so I can not judge Dr. Simka from a professional point of view. I can judge him as a person: we have been two weeks in Poland (the first one last December to get the tests done...the second one last week to get the intervention done) and after talking and dealing with him several times I can assure you that he treated us very very well. BTW we have got the same opinion about the rest of the Euromedics team: Dr. Ludyga, Dr. Kazibudzki, nurses, receptionists, etc. We have no complaints at all about Dr. Simka and the rest of Euromedics team. On the contrary, we have a deep sense of gratitude to all of them. All of them were friendly, patient, generous...with us. To sum up: Katowice was cold last week but Dr. Simka and Euromedic's team were warm with us.
Pepe.
María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby ClaireParry » Tue Jan 26, 2010 3:38 am

Hi Chris,

I feel your pain, I really do. I hate the fact that somebody else could make my future so much better and yet I can't make them do anything about it. It's frustrating to say the least.

I'm lucky. I'm seeing Dr Simka - for diagnostics only - in a couple of weeks. Hopefully, I'll get 'liberated' here in the UK if needs be.

I'm a Community Midwife and live and work in an area of the UK where we have a huge Polish population (EU and all that!!). I run a Polish clinic and have a translator with me. I think that culturally their tone when talking esp english can come acroos as quite harsh, although they are the loveliest, warmest people to know.

My own emails from Dr Simka are very blunt and to the point. No salutations or niceties! I do think this is the way Polish people come across when speaking/writing english - sorry to any Polish people for making sweeping statements!!

Of course Dr Simka is making money out of this and as you say so he should. I guess at some point he will wise up to his costs and increase them. From what others have said I believe he also cares a lot about 'us' and his work. Pay in Poland is minimal., which is why so many migrate for a 'better' life. Although in the UK I'd say that's debatable!!

Hope something comes forward for you soon.

Claire
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Postby Chris1967 » Tue Jan 26, 2010 6:54 am

cheerleader wrote:Dr. Simka is a caring, concerned and very serious doctor. wishing you the best, Chris, truly. I'm sorry.



Cheerleader I will take your word for it. Im sure he is real and Im sure he is caring. I wanted to thank you for writing me with these words of encourgement. I appreciate that.

It is very hard to be losing a little more function bit by bit. It seems I havent had a break in years. Im not used to losing, after all the years MS has had to teach me how to be a good loser I'm still not good at it.

But cheerleader thank you sincereley for taking the time to respond so sincereley.
My Best to You and Jeff
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Postby Chris1967 » Tue Jan 26, 2010 7:02 am

shye wrote: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.


Word
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Postby cheerleader » Tue Jan 26, 2010 1:59 pm

Chris1967 wrote:
cheerleader wrote:Dr. Simka is a caring, concerned and very serious doctor. wishing you the best, Chris, truly. I'm sorry.



Cheerleader I will take your word for it. Im sure he is real and Im sure he is caring. I wanted to thank you for writing me with these words of encourgement. I appreciate that.

It is very hard to be losing a little more function bit by bit. It seems I havent had a break in years. Im not used to losing, after all the years MS has had to teach me how to be a good loser I'm still not good at it.

But cheerleader thank you sincereley for taking the time to respond so sincereley.
My Best to You and Jeff


Chris...I want you to be able to be diagnosed and treated (if indicated) near your home -if you don't mind sharing, where do you live? We're all working together to make that happen. Jeff and I feel so fortunate...we're not going anywhere. Again, I'm sorry about Dr. Simka, but I hope there will be new areas opening really soon-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Brainteaser » Tue Jan 26, 2010 11:48 pm

Dr Simka is a good guy - but he's only human.

The cost of treatment seems to have trebled in 3 months.

This is why I wish people would stop pumping the demand to crazy levels by media reports when there is no supply.

CCSVI needs a flatter progression so supply can catch up.

People scheduled to go to Poland with the next 6 months may well find Dr Dake's fees a real bargain.

Phil
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Postby Johnson » Wed Jan 27, 2010 1:16 am

I did not find the e-mail harsh either (though, I must admit that I was a bit nonplussed with Dr. Simka's e-mails at first).

Simka seems a pragmatist, and as whyr' pointed out, in Europe, education is more important than Mummy - though, I think that both are more important in Europe than Canada/US/UK...

Dr. Simka's syntax (I love language!) set me to thinking of how language affects cultures, or cultures affect language. I was beginning to think that language affects us. Last night, I came across this article (Russian scientists...) http://www.aeonia.com/russian-dna-disco ... nd-blowing, which seems to validate that thought. If you take synchronicity as any further validation, I have done a few paintings entitled "tubewormholes", "building the weather with a gadget", "totem", and others during this pondering (those ideas are addressed in the article). The paintings can be seen at my home page. (I tried not to bring HAARP up, but... Haiti)

Anyhow, blah, blah, blah, I feel that the former Soviet sphere thinks and acts very differently than we from Canada, or such, do. In "the West", we espouse capitalism and free market, but deplore those ideals when they affect us. Simka has up to 2.5 million people beating down his door. I would have neither the time, nor patience, to fend them all off. I would probably raise my rates when most of my clients were "rich Saudis", too.

/babble
My name is not really Johnson. MSed up since 1993
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Postby CureIous » Wed Jan 27, 2010 1:24 am

Zeureka wrote:I am also still trying (managed to get an appointment with a Professor of the vascular Ferrara dep next week)...and lets see... he'll certainly tell me more about the political block. I'm very curious to see what he will say.


Mind if we mic you??? :) Ask him if you can post up some comments if he has any....

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby MurielC » Wed Jan 27, 2010 3:54 am

Hi all

We've emailed both Dr Simka and Dr Kostecki.

This letter you posted Chris, indicates that there is absolutely no way Dr Simka is going to admit more patients, but has anyone who contacted Dr Kostecki received an appointment? If so, how long are you waiting and when you send the original email?

Does anyone have the email address for the Dr in Bugaria who is also doing this procedure?

I hope no one thinks from my tone, that I'm trying to queue-jump or that I sound very impatient. I understand this is a waiting game, from reading everyone's threads, but I just want to make sure that we're covered every possible avenue, and then I'm happy to sit back and wait, knowing that there is nothing more I can do.

Thank to all and best of luck EVERYONE in their quest for Liberation, and in your recovery from it.

Muriel
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Postby ngocky » Wed Jan 27, 2010 4:00 am

Hello there

We telephoned Dr Kostecki last week and he told us to ring back in a couple of weeks as his MRI was broken. He seems a very nice man and we will ring him again soon. Not heard from Dr Simka yet, but we understand that he is very busy.

We also emailed the Dr in Bulgaria and his email address is grozdinski (at) mail.bg. From what I understand he is taking patients in April.

Hope this helps.

Nx
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Postby MurielC » Wed Jan 27, 2010 4:03 am

Ngocky, thank you. I'll email him also now.
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Postby cah » Wed Jan 27, 2010 7:04 am

Not sure if this was already mentioned here, or if it's relevant, or if it's related to Dr. Simka, or where to post best... :roll: :)

http://ameds.pl/
"There is only one good, knowledge, and one evil, ignorance." Socrates
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