So I had my first neurosurgeon appointment today. After waiting for 2 hours and nearly going nuts, we were finally taken in. He poured over my MRI but did no tests on me himself. He told me he thought none of my symptoms were related and said no need for surgery. I am really glad to NOT have any need for surgery, but I am kind of feeling that his guys did not know much. I have another appointment on Friday and my aunt will be joining me. I am interested to see what happens here. Mean while I am in crazy pain and nothing is helping. (Insane pressure headaches etc.)
I had the exact same experience at my first Neurosurgeon appointment. She looked at my MRI report, said I do have Chiari, but none of my symptoms are because of the Chiari. (Vision issues, memory issues, fatigue, severe headaches, etc. Every classic Chiari symptom.) Instead, she blamed all my symptoms on my weight!
If you're not getting anywhere with a doctor, you are in control of the situation and can switch to whomever you like. Advocate for yourself. Fight for your right to be treated and (hopefully) healed.
Are you going to a different doctor on Friday or the same one? Sometimes it takes meeting with many doctors before you find one that takes your symptoms seriously. Try not to get discouraged. I know it's hard but we are here for you.
I have an appointment with dr Mckhann at Columbia and I have seen several chiari sites where he was a highly recommended dr. The only problem is that he is out of network for me so I will have to pay a bit out of pocket but I’m sure it’s worth it. I realize now that the guy on Monday dismissed me and dismissed my telling of my symptoms as soon as I walked in the door.
Good luck Friday! I am so tired of hearing about these doctors that just dismiss us because they do not know anything about Chiari or how to treat it. I hope that the dr you are seeing Friday is someone who really cares about what is going on with you. Hang in there!
That sounds similar to what happened at my neurologist appointment. He did check me out a little, but said chiari was not the cause of my symptoms.... even though my symptoms from birth line up perfectly w/ my research on chiari. My first neurosurgeon appointment is October 19 and I'm hoping he will take me seriously.
Good luck on Friday!!
I am in the same place you are at. The neurologist says that the Chiari is not the cause of my symptoms. I have been trying since last February to find a cause for the neurological symptoms I am experiencing. Finally in August the neurologist did an MRI and found the Chiari. In my mind it made perfect since...all the symptoms added up. Then came the Cine MRI which shows no CFS blockage and an Evoked Principals test that was normal. So after telling me he could see where the Chiari was putting pressure on my spine he now says that it is not the cause of my symptoms. I go back in 3 weeks and if I am not better he said he would refer to to UCSF.
I hope you find resolution and a physician who will at least validate your symptoms. The problem is in our head...not "in our head". Good luck.
:) So true! After I met w/ the neurologist and was totally discouraged a friend linked me up to a discovery health special about a girl w/ chiari. It didn't even SHOW on her MRI.... yet her symptoms had her in a wheelchair.