I saw a neurosurgeon today. Of all the doctors I have seen, he is by far the most useless. My mother accompanied me to the appointment--always good to have another set of eyes and ears--and she was infuriated. He did not listen to me hardly at all. He grabbed on to a few of my symptoms and dismissed the rest. He was completely unimpressed with the Chiari, saying I'm maybe a Chiari 1/2 or 1 (? not sure what that means), but did point out I have a pannus formation at the end of the odontoid. (That is the ONLY useful information he provided.) He gave me a half-a**ed examination then pooh-poohed everything as being attributable to my fibromyalgia. My hand tremors? Eh. Some people get them, he son has them and has had them all his life, blah blah blah. Me: But I've only had these 8 months, and they're getting worse. Him: Uh-huh. Blah blah blah... (COMPLETELY dismissed it and moved on) Me: >:( And I was aghast when he said the pins and needles and numbness around my tongue and mouth were due to hyperventilation. ExCUSE ME?! I'm not hyperventilating when it's happening and THIS IS ALSO NEW IN THE LAST 8MOS. He still attributed it to stress, and oh you may not think you're stressed at the time but you are, blah blah blah. Oh, and my big list of symptoms I brought? He didn't even look at it. Sort of glanced, but wouldn't even take the paper.
When I mentioned that Dr. Batzdorf had agreed to see me at UCLA (I mentioned it to try and add weight to my case), he talked about how he talked to Batzdorf and how friendly he is, and blah blah blah, and he's eager to hear what Batzdorf says, let me know what he says, give him my card, the end. Basically he said there was nothing of note about me while simultaneously passing me off on to the expert and showing keen interest in what he says. WTF?
I'm just glad my mom was with me. I would have been wrecked to go through that alone. Seriously, W-T-F.
Darn, unwritten, I wonder why he even bothered to have you come in. It seems like he could have made up all the blah blah blah without you even needing to leave home.
Sometimes doctors' minds can just shut down with the daily grind of routine tasks. If you can get to a teaching hospital and get a bunch of residents, who are still curious with their minds wide open, you may have a better shot at learning something useful. Hopefully, UCLA will be just the place for you.
I’m sorry that he didn’t listen to you and disregarded your concerns:( I know how frustrating and discouraging that is. I’ve experienced it myself more than once. I am glad to hear that you will be seeing a more experienced and knowledgeable Neurosurgeon. My appointment with Dr. Ellenbogen was completely different than my previous appointments…He actually listened to me and validated what I was feeling. I hope you are as satisfied after seeing Dr. Batzdorf. I know it’s hard to advocate for yourself when you’re in pain, but it is something us Chiarians must do to get the care we need and deserve. I think it’s great that your mom is there to help with that also. I always try to bring a friend or family member to my appointments. I hope it helps to know you’re not alone. Sending my prayers.
Ahhhh. Again, so sorry. But the pannus info is useful. I know that pannus on the odontoid can be a sign of cranial cervical instability. CCI is common with Ehlers Danlos syndrome/Chiari patients, and must not be ignored. Do you have any of the symptoms of Ehlers Danlos or hypermobility? Look into it, and bring it up with Batzdorf.
Oh Unwritten that’s terrible sorry that happened to you. I’m glad you have your appointment with Dr. Batzdorf coming up so you have that to look forward to. Dr. Batzdorf wouldn’t have wanted to see you if he didn’t know that you were suffering from chiari so keep that in mind. I’m looking forward to hearing about your appointment with Dr. B so please keep us posted! My appointment with him is the day after yours so I’ll keep you posted as well! Also the first Neurosurgeon I saw also blew a lot of my symptoms off too as being part of my lupus… I was soooooo frustrated because we know how we feel and we expect Dr.s to at least listen to us. My mom goes with me to all my appointments also and will take notes… It’s a huge comfort glad your mom was with you through that. Take care!
I am currently a patient at Kaiser. I was told that Chiari "shouldn't produce the pain that I'm experiencing in my neck and lower back. They are unwilling to control my pain stating that I need to have nerve block shots at the base of my brain. Needless to say I am seeking medical help else where. I am close to UCLA. Does any one have any experience with their pain clinic? I have already had the decompression surgery as well as a fusion at C6-7. I need to make a decision soon. I cant stand the pain any longer.