At the risk of upsetting people..let me tell you about my Dr. Oro experience so far. I, too, went for the 3 days..loved him..loved Kimberly, loved Kelly, Linda, Sylvia...and Chuck..My experience was great..I've become very upset in the past few weeks as I've had difficulty in getting answers. I've had many of the tests..however, a full spine MRI was never ordered and EDS was swept under the carpet..even though I scored 9 of 9 on the Beighton scale. Kimberly said EDS is '"insignificant" to the Chiari Malformation.
CINE flow MRI has been in Dr. Oro's office (confirmed with Sylvia), finally I get a call back from Kimberly stating (again) that they want me to take Diamox. I have a CSF opening pressure of 12...6 weeks ago Dr. Oro ruled out PTC...which I reminded her of..she argued just a bit..then looked at my records and agreed with me....Diamox won't help..it will only make me worse. I had my records faxed to me from his office yesterday...my CSF flow study (CINE MRI) results aren't present...
I can't express my disappointment. I feel (and I shared this with Kimberly) that I made the trip to CO only to be put through tests they aren't even reading or paying attention to. Yes..they are busy..he is a busy man...but that doesn't help me right now as my life is crumbling around me due to my symptoms.
My PCP has reviewed Dr. O's notes and wants to send me elsewhere. I've found a Dr. Dong Kim in Houston. He has a great webinar on Chiari online...if he doesn't have answers then I will pursue the NY group..
I am a registered nurse working on my Family Nurse Practioner degree...I'm so frustrated at the way the medical field brushes Chiari aside and we are left to flail about on our own.
For those of you with awesome Dr. Oro stories...please don't be mad...I have alot of respect for him and the work he does..I just think he has dropped the ball with me. It's a reminder that he is just a man...and not beyond flaw. I think I went to him with expectations he (or anyone) could not meet, I thought he would hold my hand and walk me through this. I've just had another strong lesson in reality. We must be our own best advocates.