Hello all! I just had my first MRI on the 7th that showed a 12 mm chiari malformation. I had the MRI initially due to extreme stabbing head pain when i coughed, laughed or bent over. As well as hand weakness and numbness and feet numbness. I haven’t seen a neurologist yet and I’m scheduled to see one on the 29th. However, my family dr set me up with this neuro and after doing some research I’ve found that several other Chiari patients in my area have had bad experiences with him, not listening to patients, not wanting to run needed tests, pushing meds, deeming Chiari symptoms to just be migraines… Etc. So, I would like to find another neuro. Now, back in January my husband had a ruptured brain aneurysm associated with an AVM and we developed a very good relationship with a neurosurgeon. She would do anything for her patients and will fight for you like a pit bull. She has the best bedside manner. My question is… Having never seen a neurologist before for Chiari am I good to go ahead and schedule an appointment with her even though she’s a neurosurgeon? Or should I start with a neurologist instead?
I would start with a neurosurgeon absolutely. That’s great you know one that you like, just keep in mind that Chiari is not a widely known illness and many neurosurgeons do not have an up to date education on all of the ins and outs. By all means see the doc you have a good relationship with but you’ll want to know how many decompressions she performs in a year and how she performs the actual surgery -there are many different ways- duraplasty vs no duraplasty, plate vs no plate, ect…so you can research and choose a doc that you are truly comfortable with, if you choose to have the surgery. Sorry you got this diagnosis, it’s a lot to soak in and research, but there are so many kind and knowledgable people here to help with any Qs might have. Stay connected and let us know how you are doing.
Jenn
Thank you so much! I like her so much because she is a straight shooter and very honest. If she doesn’t know or doesn’t feel capable of doing something she doesn’t hesitate to say that. So I know she will find me someone who knows what to do if she doesn’t. I called her office just now and they said I need a referral from my PCP. So I called them and they seem hesitant in giving me the new referral. But I told them “it’s my brain we are talking about, I really want to trust the person in seeing.” They are supposed to call me back about it.
Good, your PCP doesnt get to decide who cuts on your brain, you do! further, I would be shocked if your PCP actually knew what surgeons are truly well versed in Chiari…
Honestly she had no idea what it way. She looked at me like I was crazy when I told her my symptoms.
…sounds about par for the course!
*was
I vote that you start with a neurosurgeon honestly. I found neurologists to be completely unhelpful where Chiari is concerned!