I have my first appointment with a neurosurgeon tomorrow, 6/8.
Although I am familiar with orthopedic surgeons from having a scoliosis fusion back in my sophomore year of high school… I’m not familiar with neurosurgeons.
Are there any particular questions I should be asking on my first visit? What types of things could I potentially expect to take place tomorrow? I don’t like walking in blind to appointsments… and after one neurologist tried to say my chiari and my symptoms aren’t relevant, that I’m making them up, and they are a result of bipolar/depression which i don’t meet the clinical criteria for either of those diagnoses, I’m terrified and nervous the neurosurgeon may have the same reaction even though my testing results show the chiari malformation, and the cerebellar tonsils moving.
Any ideas on questions or what I could take place tomorrow would greatly help my nerves!
Ask to have them review your MRI images with you in both sagittal and horizontal views. Look this up so you can familiarize yourself with them. How much crowding of your spinal cord is there in the horizontal view.
If the doctor dismisses your symptoms as not being related to Chiari, ask what are the symptoms for Chiari that he recognizes. What could be some other conditions that need to be investigated? Who would do that?
If he thinks that your symptoms are psychosomatic, ask what psychological assessment would be appropriate to rule in or rule out psychological involvement. If he believes that psychological issues are a concern, does he have someone he trusts to sort that out? A referral? Do not get angry if the doctor is dismissing you, it can be a tactic to get you out the door if they do not think that surgery is appropriate for you and you seem too challenging.
Remember that neurosurgeons do surgery, that is it. If they think that you are a surgical candidate they will tell you. If they think that you are not a surgical candidate, they may monitor you (saying that your symptoms have only been present for 8 months). They may refer you to someone else (neurologist again), or they may do nothing and expect you to go back to your referring physician for another strategy.
Do not get angry, defensive, or expect them to listen to all your life’s woes. They are more interested in neurological symptoms and findings. Have a list of those.
If surgery is coming your way, what is their complication rate, infection rate, have they made changes in their surgical procedure lately to address these issues. Perhaps this is information that you can research independently of asking the doctor. I personally would rather have a neurosurgeon with a questionable bed-side manner and a stellar rate of complications.
Big breathes, be calm. Good luck with your appointment.
I couldn’t agree with Gabby more… have your Neuro-Doc look at your MRIs!!! However, make sure they view not only the medial MRI’s (That’s the view right down the middle - as though your head were cut in half right down your nose…) But, also have him/her view the side views (lateral views).
The reason for that is… sometimes the “Chiari ooze” of your brain can come out from under the SIDE of your skull. IF a neuro-doc even knows how to look for Chiaris, many of them will only check the medial view. I had to get a 2nd and 3rd opinion after I was initially diagnosed with Chiaris, and BOTH the 2nd and 3rd neurosurgeons did not/ could not see bit of ooze coming out from under the sides of the base of my skull. (lateral ooze might be really rare. I don’t know.) On top of it all, I only had a very small ooze - like a 1mm of cerebellum - but it was enough to have made me nearly paralyzed and brain dead for 10 years! If the neuro-doc doesn’t know it already, stress on him/her that with Chiaris, the amount of ooze makes no difference to the severity of Chiari symptoms. My 1mm of brain ooze was very small - a tweek more on the left side than the right side (which makes my paralysis worse on my right side… brains are all backwards, you know…) But, my symptoms were ENORMOUSLY awful!
But, my first neurosurgeon did warn me that “Most other neurosurgeons will not see lateral blockage. They’ll only look at the medial images, and then tell you, ‘you don’t have Chiaris.’” And, that’s exactly what happened. Maybe you won’t have any ‘lateral ooze.’ But, in case you do - make sure they check for that! Hope your appointment goes well. Surgeons can be a big-headed bunch, so stand your ground!
Thank you so much for all that knowledge and information, and for the guidance on what to ask about and what information to seek. It’s a huge help and it’s helping relax my nerves about this afternoon’s appointment. You have been a huge help! Thank you so much! I’m typing out the questions and all that right now, and I feel a little more prepared now. My mother is thankful for the ideas on these questions as well, as I told her about them since she’ll be going to the appointment with me and also driving me.
Thank you so much for the information as well! You have been a huge help and helped relax my nerves as well :). I have never heard about the “Chiari Ooze”, and I have been researching it on my own. I’ve been researching the malformation, symptoms, how it’s triggered, how it progresses, the clinical information on how it develops, surgery process and what it entails, etc. I used to work in a psychiatric hospital and a lot of my colleagues were amazing Psychiatrist’ s and I learned a lot about doing research from them :).
I cannot imagine what it’s like to have that ooze and to be paralyzed. I’m terrified of any paralysis happening to me, I have rods in my back from a scoliosis fusion surgery back in 2006 so I’m careful with what activities I do as it is because of that, and now this malformation with my brain…even more careful. I will definitely make sure the neurosurgeon checks the MRI’s to see if any of that is showing!
Thank you so much!