I need advice please. Saw a new doctor today as my headaches are getting worse! I am on the fence about him, he said.." I don't think your headaches are from Chiari. I don't just operate on people because they have headaches. I am sending you to a nurologest and try meds, if that don't work you will come back here and I am going to mesure the pressure in your head as you may need a shunt. Also sending for a flow study MRI." Well my reply.."I have had plenty of surgeries and not looking for another. I just want help with this head pain as I can't take it anymore." I know some of you have been told the samething "your headaches is not from your Chiari". But isn't that what the main thing of our illness is HEADACHES! He is Dr. Sun with Nortons in Lou, KY. I feel like I trust my chiari family more then the doctors! Sorry for any errors as I can harldy see as my head is pounding....please any adives is welcome and helpful!
I have a question here..why doesn't th NS order the flow study NOW????? I hope you feel better soon. Keep us in the loop.
I too know how you feel with the headaches. I am on topamax and feel like its a complete waste but scared to go off in case my head would hurt more! My family Dr. Is clueless with Adults and Chiari he’s only dealt with babies and thinks my headaches and neck pain are stress &sleep related and prescribed me Ativan! Which is funny because of course I’m stressed from lack of sleep from the pain and stress of worrying about the stupid Dr. Not helping the chiari.
I’m going to the Neurosurgeon tomorrow Dr. Golshani at Loma Linda in Ca. I hope he will give me hope with surgery at least the option. Before Obama Care kicks in and we might get nothing:(
I totally know what you mean here!
I have seen a nerologist who is convinced my Chiari (mm) is not that bad and that I have migraines, he prescribed me medicines but I was so scared to take them. I get super frusterated because my headaches, pressure, other symptoms come and go so I never know what to do. Sometimes I wonder myself is it related to Chiari or not. I also so a neurosurgeon at Johns Hopkins in Baltimore, MD (Dr. Olivi) and he was very good and helpful and ordered a flow MRI which came back with no blockage so they said "we don't know what is causing your headaches" and do not want to do surgery. Now they don't want to see me again, do another MRI, etc, I call their assistant with questions and she goes through them and gives me an answer but they don't want to see me again and I think that is because I am not getting the surgery. I think I need a good nerologist that knows about Chiari but have not found one that is very experience in my area. Johns Hopkins sent me to their Headache Center but my appointment isn't until March 1st, 2013(and I made the appointment in August 2012)!