Appointment at Mayo -- any suggestions?

[kricklekrin]

I will be going to Mayo in a few weeks.  Does anyone have any experience with Mayo Clinic?  I'm going because my seizure disorder is out of control, but they know I have Chiari and I will be having an updated MRI.  I'm on the highest dose Zonegran and an add on seizure medication and the discharges just keep on coming..............  

I just lost a friend.  She was so beautiful, only 41 with a husband and and three gorgeous children.  She had Chiari Malformation 1.  Please support Conquer Chiari Walk Across America -- Lets find a cure for Chiari, let's get involved in finding that cure.  

Prayers out to all of you -- a wonderful symptom free day :)
Kristel

[selmaS]

  Hi...yes there r links where u can go to , to set up a walk....see the walk thread and follow the link.

This is the 4th chiari related death in the last week and a half....this is the first I am aware of that happened during surgery, and it  was the 5th one.....

U have to keep in  mind we r all diff and have a multitude of issues going on...such as , I have tethered cord, if it i was a bad one have my chiari surgery could have made me feel worse....plus, I also have ehlers-danlos, I run a higher risk of rejection, so if a patch was used other than one harvested from my own skin could have caused me to have an infection , possibly meningitis....I also could not have stitches to staples.....

These along with other family history health issues play into how one might fair..as well as age the younger the better, so they say.....not sure ....

Children should also be checked for sleep apnea, this is one cause of death post op...one issue many drs may not look for.

   "selma"

[syddog]

Yes, this is my second post in five minutes- sorry Im new :)  I am wondering a few things..there is no Chiari walk near me.  Actaully there isn't one listed in my state.  Is it possible to start one or what is the besy way for me to support the cause?  Secondly, I am reading this inofrmation on death.  Is this something ( I mean, OBVIOUSLY  brain surgery is dangerous) that occurs..well, I mean, isnt rare.  I know, it sounds like an absurd question.  I know surgery should be a last resort.  But, living with pain daily is ..well, you all know.  I appreciate hearing anything anyone can tell me.  My daughter is 13.  

[syddog]

I don't have any real insight though living so close to mayo I will say everyone who i know who has been there is exceptionally pleased.  I took my daughter to their ped neuro dept and felt extremelly secure in there choices for her treatment.  You are lucky to be going- you will be impressed :)  Good luck.

Also, i am so very very sorry for the loss of your friend.  I will be thinking of you during this difficult time.  

[stenosis_Steve]

Make sure they measure the Anterior Posterior aspect of your cervical canal and make them tell you the numbers. 12mm or less is cevical stenosis and has the same symptoms as chiari. You can measure it yourself if you get a disk of your MRI. Many dr.s never measure this and it is a critical value. Search congenital cervical stenosis. My wife has had surgery and had been to Mayo and Cleveland -both weren't impressed by the degree of ectopia but she improved greatly with the surgery
Steve

[selmaS]

  HI Kristel....my deepest sympathies on the lost of ur friend. And u r sooooooo right we need awareness and more to get out for the walk this year...we lost one more chiari sister today....Kristi Smith passed during her surgery and we had 3 last week. We need everyone to get involved and let everyone around us know just how this condition affects so many.

I do not know that many that have gone to Mayo....I was not aware there was a chiari Dr there....but, understand u need to get ur seizures under control.....do u have a chiari dr?


   "selma"