Hi we do have a member here that had one and surgery for it as well...I will notify her to contact u.
welcome to our chiari family! it's only my opinion, but i would take all your old films and reports with you. in my own personal experience, which is limited, i find the drs are much more interested in the film, then the reports. if you have a dr. that wants only to review the reports, you are not with the right dr. and def. not with a specialist!!!
Thank you, Selma! I have been on a scavernger hunt to get as many of my records as possible from when all of this really got bad. (It was just after an auto accident, btw.) Now, that is not saying (knowing what I know NOW) that this was the onset of symptoms... just when they got really bad.
The hemangiomas are something I am just reading about. They're just another one of the things listed that I was never told about. And armed with the understanding and support of all of you here, I trust your judgments much more than I trust any of the doctor's judgements... at least the ones I have had so far.
Going back to a previous doc tomorrow to see if he will order the MRIs Dr. Batzdorf has requested. Keep your fingers crossed for me! (And keep it in your prayers that God would lead this!)
Thanks and Blessings!
U r welcome...I will see if I can get teh member to contact u tonight.
Good luck tomorrow
Thank you! I agree... but all that is available now are the reports. They are from 1999. I am in the process of trying to get a local doc to order the MRIs that Dr. Batzdorf (at UCLA) needs to evaluate whether or not he will take me as a pt. (In fact, I have spoken to several chiari specialists... all who want the same. So no matter what, in order to move forward with a specialist, I have to have these new MRIs.) Dr. B only requested MRIs of the brain, cervico-cranial junction and the cervical spine. I may even go ahead and try to get them to do a CINE MRI as well.... but if there is resistance, I won't press my luck! ;-)
lol! boy! you've really done your research! good for you!!! best of luck to you and keep us posted on your progress. you'll be in my thought and prayers...