Calling Dr Simkas patients.........

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

Postby acol » Thu Jan 14, 2010 12:17 pm

Hi dunkempt

I know the feeling and share the anxiety. I first contacted Dr Simka around the time that he was contacted by Wonky1 and Mutley. They seized the moment and had the procedures done weeks ago. I have been promised treatment in March but don't have an exact date. It is a worry. But I don't want to bother unnecessarily a very busy man. Hopefully, I will be given a firm date soon but this may not occur until we are into early February.
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Postby dunkempt » Thu Jan 14, 2010 1:02 pm

Hopefully, I will be given a firm date soon but this may not occur until we are into early February.


:-) Yes, and I don't want to bother one of the handful of people in the world who might be willing and able to provide practical assistance with this sometime in the next year even a tiny bit at all...

So I’m *not* going to write him on my own.

I will sit here and check my email and the forum 5 times a day just like everyone else and what will be will be... (If my illness has given me anything, it's undesired practice with obligatory patience...)

But - for example - if I *knew* even as much as that I should not expect a firm date until early February, it would be helpful both practically and other ways.

-d
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Postby Richardk » Thu Jan 14, 2010 1:07 pm

tipsyturtle wrote:Are there any any other Dr. Simka patients on this site? I know only of Erika and Mutley.
I plan to see him in April.


I am scheduled to see Dr Simka in August, and based on the email from him, so are 9 other people from various parts of the world, including Norway, Bulgaria, Italy, Australia and Canada
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dr. Simka

Postby cervin » Thu Jan 14, 2010 2:32 pm

i am on the waiting list for May.
I live in the USA
-ceci

Richard, are you on the waiting list or are you scheduled?
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Re: dr. Simka

Postby Richardk » Thu Jan 14, 2010 4:31 pm

cervin wrote:i am on the waiting list for May.
I live in the USA
-ceci

Richard, are you on the waiting list or are you scheduled?


Ceci

The email says August, and based on previous posts will likely not be firmed up until close to August...Dr Simka's email says I'm due for 'Liberation' treatment' ...so presumably will be for both testing and treatment
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Postby Zeureka » Fri Jan 15, 2010 3:20 am

Hi, I'm new on here. Nice to read your posts! :D

I am flying to Katowice next week. From Italy, since over here noone will do me the doppler: isn't this ironic? Have doppler with Dr Simka in the morning on 19 Jan at the Rolna Euromedic. Anyone of you there by chance?

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Postby Acheron » Fri Jan 15, 2010 7:39 am

Zeureka,

has dr simka told you that a doppler examination is enough for him to diagnose a ccsvi? I have emailed him regarding this question but i am still waiting for a reply.

I wouldn't like to come over to Poland from spain and come back with an incomplete diagnosis.

Regards
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Postby broomdancer » Fri Jan 15, 2010 8:18 am

Hi everyone:
My husband is scheduled for August and he is having all the tests and procedure ( if necessary) at the same time to save on 2 trips. We contacted Dr Simka Dec 11th and if we had just wanted the tests and/or dopplar we could have gone earlier. We are from Ontario, Canada.
Regards Diana
Last edited by broomdancer on Fri Jan 15, 2010 8:31 am, edited 1 time in total.
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Poland testing

Postby Dovechick » Fri Jan 15, 2010 8:20 am

I think that you get the test he needs to get a firm diagnosis. He routinely order MRI, MRV, doppler. He sent me the cost of the procedures that he usually uses.

-vascular specialist consultation with non invasive diagnostic procedure
(color doppler and MRV) ...........300 euro
-vascular specialist consultation with non- and invasive diagnostic
procedures (angiography)...1100 euro
-vascular specialist consultation, all necessary examinations and an
endovacular procedure (PTA)......3500 euro
-vascular specialist consultation, all necessary examinations and an
endovascular procedure
(1 stent implantation)...4200 euro
-vascular specialist consultation, all necessary examination and an
endovascular procedure
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Postby Acheron » Fri Jan 15, 2010 8:47 am

Hi,

I contacted dr.simka via e-mail telling him that we are interested in the tests (not the procedure yet). He replied inmediately saying that he could only arrange the doppler, as the mrv has limited availability and the patients scheduled for the liberation procedure have priority.

That's why i emailed him back asking if the doppler is enough for a reliable diagnosis.
Last edited by Acheron on Fri Jan 15, 2010 11:38 am, edited 1 time in total.
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MRV

Postby Dovechick » Fri Jan 15, 2010 8:50 am

Acheron wrote:Hi,

I contacted dr.simka via e-mail telling him that we are interested in the tests (not the procedure yet). He replied inmediately saying that he could only arrange the doppler, as the mrv has limited availability and the patients scheduled for the liberaration procedure have priority.

That's why i emailed him back asking if the doppler is enough for a reliable diagnosis.

Interesting so it may be the mrv's which are limiting the number of patients he can see.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby Zeureka » Fri Jan 15, 2010 9:11 am

Acheron wrote:Zeureka,

has dr simka told you that a doppler examination is enough for him to diagnose a ccsvi? I have emailed him regarding this question but i am still waiting for a reply.

I wouldn't like to come over to Poland from spain and come back with an incomplete diagnosis.

Regards

From what I understand from Zamboni's research papers, the special eco-color-doppler (extra- and endocranical of azygos and jugular venes) was used as the method in his research to diagnose CCSVI. And Dr Simka also uses this Zamboni method :D So it should be one way of FIRST DIAGNOSIS.

I know that alternatively - or in addition - you can also diagnose with Magnetic Resonance (to get additional info, so seems Simka does both to have a fuller picture. But Zamboni did to my knowledge not use this MRV technique (I was actually astonished when saw it being applied elsewhere for diagnosis). And that the following ABSOLUTELY REQUIRED venography, which is invasive, then gives extra specific details necessary for the operation.

See below what Dr Simka had asked me in December when asked for a doppler for CCSVI diagnosis. I then decided to come in January since wanted to have the diagnosis immediately. With a doppler you will get diagnosis, but most likely no pictures (Simka told me for a doppler those make little sense) - only a written detailed medical venologist description of the problem.

It is therefore indeed not as detailed as if you do everything in one go or do the MR/venography in addition, where you get pics. But please note that the date for the waiting list of the wider packages is now no longer September 2010, but Simka told me today on the phone mid 2011! I do not want to wait that long for my diagnosis and hope with the doppler results from Simka can try to give my helpful generalist some justification in hands so he can send me to a venologist. My generalist is very open to Zamboni's findings but was unable to find a lab that would do the specific CCSVI doppler test. It seems only in the Ferrara Hospital they know how to do it and there the procedure is blocked for political reasons. So I also need this doppler-exam results to try to move on things here in Italy!

And if have diagnosis, also do not mind to organise a second trip to Poland (or Bulgaria?) later. Before organising for everything isn't it better to know first if you have a CCSVI problem and check out the place and doctor? Dr Simka told me today that until now he diagnosed CCSVI in 95% of people with MS, that's encouraging! But am still curious if I'm part of the 95%.

I will go with (very!) low-cost flight + 50 Euro cost for doppler diagnosis, that's affordable 8) And should I have asked for more (ie MR + venography) would have needed to go anyway for a second time, as the intervention cannot be done by Simka before 2011...

But that's my personal case. I understand that if s.o. needs to fly for a high cost from Canada/US (or cannot get a low-cost flight in Europe) that difficult to afford two trips.


Datum: Samstag, 12. Dezember 2009, 17:34

Hello,
Are you interested only in Doppler examination. In such a case the examiantion can be done earlier (January). Yet, if you want to combine it with MR venography and operation during the same trip to Poland, the appointments are at the moment in September 2010.
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Postby Zeureka » Fri Jan 15, 2010 9:40 am

Just to clarify the differences of exams and definitions:

1.Eco-color doppler of extra-endocranical veins (in particular azygos and jugular veins are checked, since most commonly blood flow problems found there for MS.). The machine is a standard doppler machine as used for cardiovascular examinations (only that there they generally check arteries), and for the CCSVI test applied to MS patients a specific computer program is required and the examiner needs to know precisely which veins to look at.

2. MRV => Definition: The type of magnetic resonance imaging (MRI) used to visualize veins, the blood vessels that bring blood from the body's internal organs back into the systemic circulation.
The MRV uses the same machine as an MRI, but a special computer software allows it to only extract generated-by-blood images, as it flows through the veins. These images give doctors a rough idea of whether blood flow through a vein of interest is affected by blood clots or other disease processes.

=> Both 1+2 can either be seperately or in combination used for a first CCSVI diagnosis. Zamboni used No 1.

3. Angiography - am confused about definitions on this term (I first thought called Venography), but seems that Simka is using an invasive technique to check the veins from inside in more detail? I understand that it is performed after diagnosis to check then the specific affected problem veins, to give more precise details on those, which are required for a following vein intervention.

4. The intervention process to eg enlarge the veins and potentially place some stents.

=> Simka does them all 4 one after the otherto get a full picture. But for diagnosis only - to know if you have CCSVI - one of the 3 first should be sufficient.

Steffi
Last edited by Zeureka on Fri Jan 15, 2010 10:46 am, edited 1 time in total.
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Thank you

Postby fiddler » Fri Jan 15, 2010 10:54 am

Thank you so much for this concise summary, Steffi. By the way, what are the political" problems that are stopping Dr. Zamboni from continuing to offer the Liberation treatment?
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby nives » Fri Jan 15, 2010 11:31 am

We would want to know it also.
Nives from Milan (Italy)!
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