Hello everyone! I’m new to this group and I’m very glad I found it. I was diagnosed back in 2002 after having extreme “tension” headaches. Those headaches turned into blackout spells while walking and driving in which I lost my licence for a year. I let everything go till i couldn’t take it anymore this year. I started having migraines once a month in which my doctor told me sounded like they went along with my monthly cycle. But he did eventually refer me to a neurologist. I was set up for an MRI in which my Chiari was confirmed. Now I’m back and forth with different preventative medicines because i have debilitating headaches and nausea every single day. My neurologist seems that she either doesn’t know much about this disease or just doesn’t want to discuss the results indepth with me. I don’t know how far the tonsils are. Should i find another neurologist?
Never a bad idea to get a second opinion if you are not sure your neurologist is either not listening to you or doesn’t know about chiari. I would get a second opinion.
I might consider securing a referral to see a neurosurgeon if you would like to discuss the physical presentation of the Chiari malformation. I have seen 4 neurologists since MRI indicated Chiari presence and not one has looked at the actual MRI, only the radiologist print-out. Not sure, but I do not think that the average neurologist has the skill-set to read and discuss MRI results. If you do not wish to have surgery at this time, you can still seek a consultation.
Good luck in your information-seeking journey.
I figured it was a silly question but figured i would ask. A friend’s son has it too and was told basically nothing they can do. I think I’m scared too…scared of answers.
I hear it’s difficult to locate a neurosurgeon in the area you live. I’m going to start research in the morning for one.
I would suggest you make an appointment with a Neurosurgeon not another neurologist to get an overall opinion of your condition.
You need to see a neurosurgeon and a neuroradiologist needs to read an MRI. I had a regular neurologist and radiologist who didn’t see anything. When I went to the neurosurgeon and he read the report he couldn’t believe what the radiologist report said and neither could my Ehlers Danlos doc at Johns Hopkins.