Well… I met with my first neurosurgeon on the 4th of December. He was an arrogant jerk. He walked into the room and immediately his text alert went off and he responded to it as he sat down and then once he was done texting he reached out to shake my hand and introduced himself, and then told me if his phone went off again he was going to respond, because he is waiting to hear from his realtor… (So immediately I was rubbed the wrong way!) He did a quick and very normal exam… like what my normal family doctor would do. Then he proceeded to do like a reflex exam… everything to him seemed normal. He quickly looked at my MRI and said all looked Great! He said that there is some low laying tonsils but not enough to even think or consider to be a Chiari malformation (the MRI reports a 4-5mm tonsillar ectopic). He said extremely confident that all my headaches are due to occipital neuralgia. That my numbness and tingling in my arms and hands, and my loss of muscle strength in my arms and hands he just has no explanation for… but he said not to worry he didn’t think I was crazy, just over thinking my symptoms… So he asked me so… what are neurosurgeons good for… I looked at him blankly… (me still dumbfounded by his assholness) and he proceeded to tell me surgery, and that I was in no need of his expertise and he was going to refer me to pain management for an injection for occipital neuralgia (oh he HAD to add to this diagnosis that his soon to be ex wife had many of my same symptoms and had the injections for occipital neuralgia and it was her cure all!), and to follow up after 6 months with his nurse practitioner. I did not schedule that appointment! So on Friday, I humored the jerks diagnosis and went to the pain management appointment and met with the Doctor… and wow… I was impressed and glad I went! He was beyond polite and comforting! He said not to dismiss your neurosurgeon diagnosis, but did he not have a copy of your MRI’s? I said he did… He said well did he not discuss with you your Chiari malformation? I told him his said it was not enough to consider it. He said well with your symptoms and the amount of pain I can clearly see you in, it is! I strongly recommend you see a neurosurgeon else where, but until then I would like help you manage your pain better! He saw in my cervical MRI some joints that could be causing me issues and he wants to do some injections to help relieve the pains that they are causing… So, at this point I will take what I can get. I am just so surprised that this pain management doctor was so much more aware of Chiari than a neurosurgeon is… I am relieved and upset at the same time… how can this so called neurosurgeon be a doctor and to boot a suregon!!! I know I am not a 10mm or worse but my symptoms are real! I just hope my next neurosurgeon is more professional regardless of needing surgery or not and is willing to help me!
Some neurosurgeons do not specialize in Chiari and have no idea what they are talking about you should do research about neurosurgeons in your area that do know about Chiari. I know it is frustrating when a Dr., Neurosurgeon or anyone writes you off like what you are going through is nothing but instead of admitting they don’t know some will do that. I really hope you are able to get help. Best wishes.
I am hoping the neurosurgeon I see in March is better! I asked the intake nurse if he specialized in Chiari and she said oh yes, he has many Chiari patients and they are life long… I plan on calling again this week to find out how many decompression surgeries he had preformed as well.
MrsStevens, ah the joys of having a rare disease or condition! Just because a doctor is a specialist in a particular area, doesn’t mean that they will necessarily be of any use to you with your rare condition. I work in Moderator Support, we visit all thirty-six of Ben’s Friends communities, and we see complaints like yours almost every day, in almost every community. I know that doesn’t make it easier or excusable, but it’s just the way it is when you have a rare condition.
What a ridiculous set of priorities: a text from his broker rather than his patient. LOL, time to move on! Yes, let’s hope your next consultation goes better.
And big THANK YOU for not identifying the doctor: we have rather strict rules about that kind of thing.
I wish you luck. Trust me he was bering an idiot. I had a 7 mm herniation n even had a bad car accident 15 yrs. before I started showing bad symptoms. I got to the point I couldn’t hardly work. My family doc did the MRI n said I had chiari but she said that wasn’t causing my problems. She never saw the fluid build up on my brain on the MRI. The neurosurgeon did. So it depends on who you talk to at any given time.
I am so sorry yours had to get to that point! That is horrible. I saw my new neurosurgeon this past Monday and he was very kind and patient. He said I was Boarderline Chairi. Since my decent is 4.8mm and that he wants to treat conservatively. So he referred me to a neurologist for 6 months to treat the headaches. Then after the 6 months we will repeat the c-spine MRI and make sure it has not progressed anymore. Then we will talk about how the treatment is going. I am not sure how I feel about this… I have not heard too many great thing about neurologist. I hope you are feeling better!
Post surgery my neuro surgeon will not see me anymore. He said he only does surgery n I need to go to my primary care doctor. She sent me to a neurologist who in turn did nothing. She got paid for telling me to go see a pain management specialist. She said they can give you shots in your neck. Absolutely not. That will not happen. I am finding that doctors really no nothing about chiari. They do the surgery but nothing else. They leave you floundering post op.
These stories are terrifying, im supposed to go see a nuerologist after being told last night that i do in fact have cerebellar tonsillar ectopia. But two differe t doctors looking at two differe t CT scans, didnt seem to give a crap. At least the lady last night had some sympathy and helped me find 4 different nuerologists in my area. I havnt seen one yet, but im Already getting the feeling that people dont act like this is a “serious” condition even after seeing the scans. I cant keep functioning with these headaches and forgetfullness. It makes me so frustrated which brings on another bad headache. My wife doesnt even understand, she thinks im just turning into a jerk because my moods are everywhere and i blame her for misplacing stuff because i dont remember that i did it. This is definitely a lonely place to be. Hopefully there is a nuerologist in my area that truely understands this stuff.