Side effects Stanford vs Poland

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

Side effects Stanford vs Poland

Postby JoyIsMyStrength » Sun Jan 10, 2010 1:54 pm

Hi everyone, I have been curious about something. Is it my imagination or does it seem that the people who have had the procedure done at Stanford by Dr. Dake have experienced more post-op problems (most notably persistent, sometimes severe shoulder pain) than those treated by Simka's team in Poland?

I could be wrong... but if not, what do you think would account for the difference? (This is not at all meant to imply that one doctor is better than another... just that there are still unknowns.)

I haven't had the procedure but have made inquiries. Still waiting for an email reply from Dr. Simka.

Thanks for any feedback,
Pam-Joy
User avatar
JoyIsMyStrength
Family Elder
 
Posts: 164
Joined: Fri Jan 01, 2010 4:00 pm
Location: US

Advertisement

Postby cah » Sun Jan 10, 2010 2:09 pm

I've also asked this myself some time ago. But now, knowing more, I think you can't really compare, cause there are much less reports here of the treatment of Dr. Simka than of Dr. Dake, and as far as I know Dr. Simka startet the treatment much later. Perhaps he already had learned from the experiences of Dr. Dake. If I got it right he first used rather bigger stents, making those shoulder problems, and then went on with smaller ones.
"There is only one good, knowledge, and one evil, ignorance." Socrates
User avatar
cah
Family Elder
 
Posts: 336
Joined: Tue Oct 27, 2009 4:00 pm
Location: Germany

simka v dake

Postby Dovechick » Sun Jan 10, 2010 2:54 pm

The thought crossed my mind also. Probably the Polish team have learnt from Dake's experience, and it is true that we only hear reports from English speaking patients going to Katowice for treatment, but having said that we have not heard of *anyone* with the prolonged arm/neck pain US patients have reported so maybe they have adapted their technique to reduce these side effects.
It is difficult to get information from the doctors in Poland as they appear to be so busy but we can hope that they will report on their work in the future. It is worth mentioning maybe that it is Dr Ludyga who does the surgery, Dr Simka does the doppler/ultrasound testing.
If I get the opportunity I will ask whether they are going to publish their work.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
User avatar
Dovechick
Family Elder
 
Posts: 349
Joined: Sun Feb 12, 2006 4:00 pm
Location: Sussex UK

Postby cah » Sun Jan 10, 2010 3:25 pm

Dr. Simka already has published, at least at the theory:

http://www.ncbi.nlm.nih.gov/pubmed/1944 ... t=Abstract

From what was mentioned in the german forum at csvi-ms.net, Dr. Simka is not very happy about so many people sticking their heads together and theorize on the internet, as he says that every case is very different and should be looked on only by the specialists. (Can't find the relating post any more).
"There is only one good, knowledge, and one evil, ignorance." Socrates
User avatar
cah
Family Elder
 
Posts: 336
Joined: Tue Oct 27, 2009 4:00 pm
Location: Germany

Postby JoyIsMyStrength » Sun Jan 10, 2010 3:55 pm

cah,

1. With all sincerity and due respect to Dr. Simka, I don't think there is a doctor on the planet who is happy about patients theorizing on the Internet. They especially hate it when we try to diagnose ourselves, LOL. (I do believe strongly in facts, and asked the initial question hoping to learn whatever info I can. It is NOT good when misinformation or unintentionally distorted facts get posted here so we do need to be careful. Everyone should do their own due diligence and not accept everything they read online as gospel.)

2. The link you posted is interesting but I do not really understand what it has to do with variations in side effects from the procedure. Can you help?

Thanks! :)
User avatar
JoyIsMyStrength
Family Elder
 
Posts: 164
Joined: Fri Jan 01, 2010 4:00 pm
Location: US

Postby cah » Sun Jan 10, 2010 5:35 pm

1: Of course you're right and I don't blame him for being unhappy with... us! :)

2: I thought you just asked if Dr. Simka already has published something. Of course this has nothing to do with side effects.

All in all, Dr. Simka seems to be by all means a reasonable and sensible person, so I just think he knows what he's doing.
"There is only one good, knowledge, and one evil, ignorance." Socrates
User avatar
cah
Family Elder
 
Posts: 336
Joined: Tue Oct 27, 2009 4:00 pm
Location: Germany

Dr Simka

Postby Dovechick » Sun Jan 10, 2010 11:59 pm

Dr Simka has publidshed a number of papers over the las t couple of yers most of them are availabe in this thread put together by Marie.
http://www.thisisms.com/ftopict-7098.html
Which is why I am hoping that in time he might publish something about his experience. From what I understand from UK people who have been there for the procedure, there are always a couple of other people undergoing the procedure on the same day as them. I heard from the son of one UK patient that one young woman had been told that she did not require surgery at which news she was very upset. But it does go to show that they do not perform surgery without thoughtful consideration of the individual. Upon discussion there were opinions voiced that she may not have been suffering from MS as she had been suffering from her condition since her early teens. At this distance we do not know enough to understand what is going on, but if it were not for the internet we would understand even less, but it is OUR life we are talking about...
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
User avatar
Dovechick
Family Elder
 
Posts: 349
Joined: Sun Feb 12, 2006 4:00 pm
Location: Sussex UK


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users