free chiari webinar next week

[dyinginpain]

Sign up at mischerneuro.com/chiari_malformationwebinar if interested.  The webinar is next Thursday 9/8/11 at 3pm. Looks interesting & informative.  It states you can ask the dr any questions if have any.

[selmaS]

  No, the synthetic dura patch is not new, and it has had problems.....here is a link to an older thread-http://www.medhelp.org/posts/Chiari-Malformation/chiari-dura-patch-leaking/show/1066847

  There was a way to submit questions in advance, but I did not get on soon enuff to do so....

Even  with "chiari" specialists u will have major differences of opinion....u  need to find a dr that feels the way u do with all the research u do......

  Such as a dr that would refuse to use a patch u prefer over one he wants to use for no other reason then speed to get in and out of the OR is not someone u want....u want one that will consider possibilities of rejection of the patch...and more issues as a result....

And those that claim to cure or heal us  that we no longer have chiari post op....makes me wonder a bit about them and their egos.

Too many also use time frames to guide patients back to work or "normal" activities...which I feel should not be done...we all have our own time table, and not until we r in the recovery process will we be able to tell what we can or can not do.....

And to ur point...no constancy with how to dx this condition...some look for 5mm or longer...ugh....

What can I say, so much research needs to be done as well as education of the NS's already in hospitals let alone the ones in med school now.

   "selma"

[jenshead]

Well...you probably know how much reading I do and how many doctors I've seen, so I wasn't expecting anything really new :)

He mentioned something about a synthetic dura patch that he started using recently that has virtually eliminated CSF leaks.  Is that new to you?  Not something I've read a bunch on.

One thing that I was disappointed about, and it's not his fault, is that during the Q&A the questions were all about symptoms.  I wanted there to be more questions about lack of knowledge, talking to drs who think there's a 5mm rule, etc.  

People did ask about symptoms returning or the surgery not helping.  He gave the obvious answers - surgery not done right and needs a redo, CM may have not been the true cause of the symptoms, rare cases, etc.

Oh and one other thing...I know you and others on here have said that Chiari is progressive.  But then when I went to Dr. Heffez, he did not seem to think that.  The presented (Dr. Kim) did say it's progressive and that generally the surgery will have to be done eventually.  Troubling to me since I have not had surgery and my symptoms are pretty awful as it is!

[selmaS]

  Thanks Jen....so u did not learn nething new from this webinar?

   I was so hoping to hear something new, or something for those that are post op as to care......nething along those lines?

[jenshead]

I just attended this webinar and it was pretty good.  Very good information that seemed to go along with what I've heard from others.  

He said the presentation was recorded and will be posted on the website, so that's great for anyone who missed it.

[selmaS]

  Thanks for posting this info....it looks to be a very informative session.