Chiari Online Support Group

Chiari Neurologist

Do we have any recommendations or a directory for Neurologists to help monitor symptom. Or is it best to just work with the NS as a follow up?

That's a great question. I am fairly sure all the doctors in the directory are surgeons. I say this... IF your surgeon is willing to work with you on long term after care and there isn't an insurance or financial issue, why not? But generally speaking, most surgeons are not known to do that. Have you asked your surgeon for a referral? Maybe also it may be more effective to start a new post asking for neurologist recommendations for your specific area. Good luck

I'd like to know this, too. My NS was useless for follow-up. After my decompression, he brushed me off. He said if I still had symptoms, they must be due to something else. He just told me to ask my primary care doctor for a referral to "any general neurologist," shook my hand, and walked away.

Even after having had the surgery, I still have never had an actual conversation with any medical provider with real, useful knowledge about chiari. My NS just said, "You're fixed." The rest of them have basically either shrugged at me or said they don't know anything about it.

that's horrible. I can't stand the term...your fixed!! I am having a different issue with y surgeon, but I pt my foot down nd told him he is taking responsibility for his work and his patient, and he actually is. I feel if that is his attitude anyway, you have nothing to lose. It took me a long time to get this way, but I am not standing for it anymore. Yes, I am sure they all secretly regret taking me on, but they did when I was a money opportunity, so too bad. I would call up nd tell him you need another follow up because you felt rushed and got nothing out of it. Tell whomever you speak to on the phone that for the surgery you underwent, you feel like you deserve a decent follow up and availability in the future if you feel there is a problem or have any concerns, period. Then make sure you are prepared with a list of questions. AND record the follow up and let him know you are doing it! Let him worry about what the recording would sound like to others. My new attitude has been serving me well. I have nobody to help me out, so I am learning to stand up for myself. Sadly, your story is all too common. Meantime, start asking the group for referrals for your area. Where do you live?

mizfeldy said:

I'd like to know this, too. My NS was useless for follow-up. After my decompression, he brushed me off. He said if I still had symptoms, they must be due to something else. He just told me to ask my primary care doctor for a referral to "any general neurologist," shook my hand, and walked away.

Even after having had the surgery, I still have never had an actual conversation with any medical provider with real, useful knowledge about chiari. My NS just said, "You're fixed." The rest of them have basically either shrugged at me or said they don't know anything about it.

I have seen several NS in north carolina . The only Ns in noryh Carolina thsy ive seen who treats you and knows what they are talking about is dr michael rosner neurosurgeon Hendersonville nc He does not push you to do surgery . He is the only chiari specialist in north carolina noted by the chiari institute in new york

We will be putting up a place for members to give positive doc reviews on the site. Look for it in the coming months. Until then, I have gotten some good referrals through Angie's list, and from my gp. I simply ask who he would feel confident sending his favorite family member to, if he had any interactions with the doc, and what patients have reported back to him. I let him know I am looking for someone that he had personally vetted.