You have never seen someone so upset at being told they can’t have brain surgery as I have been tonight. Had my Cine today and immediate follow-up with NS (yes, a chiari expert.) His final assessment is that I have an anatomical chiari but not a “clinical” chiari. He said the cine flow looked beautiful, and it shows the amt. of flow he aims for his surgical patients. He said despite my 5+ years of pain and my list of over 20 neurological symptoms (and the fact that I went numb on the MRI table and almost couldn’t get up due to numbness and back pain),he doesn’t think chiari is the problem and referred me back to general neurology. He did go ahead and schedule an extennsion/flexion MRI, but I think he mainly did it to appease me. He just kept emphasizing that he truly believes surgery would not improve symptoms, therefore he is unwilling to take the risk.
To say I am upset would be an understatement. I graciously left the office and made it out of he building, but completely broke down once I reached the car and sobbed and sobbed. I’m sure my hubby thought I was out of my mind crying over being told I couldn’t have brain surgery. But I can’t help but feel grief over what feels like six years of wasted money on countless tests, doctors, and all the time my hubby has taken off work to accompany me to countless appointments. I feel completely defeated and at a dead end. Second opinion is not an option at this point. With everything NS said today, he has hubby convinced it’s not chiari. He feels it is time to cross it off the list. I don’t know what to do now. If not chiari then what else could it be? I do have an appt with a new neurologist on Friday, but I am so weary, I dread starting over from scratch. It doesn’t help that I woke up with a migraine. The MRI and upsetting news and tears certainly didn’t help matters. Hoping it goes away soon so I can try to get some sleep tonight.
Hopefully tomorrow I will be able to correct my attitude. I should be rejoicing, I know. Lots of people were praying for me today and are so very relieved I do not have to have surgery. All I really want is an answer so I can have my life back. Thanks for listening.