Hi, Tere,
It took me a long time to come up with the best way to get the most out of a doctor appointment--especially with a specialist. Really, being organized is just not one of my most natural states. I have to work on it. Here's what I've done since I joined this site and got other people's input.
I made a folder specifically for SOM. In there, I keep a blown up version of the Wikipedia eye diagram (Google up "superior oblique muscle" or go to Juds' surgery site) that Juds has used to explain things on her surgery site. I'd never have found that if it hadn't been posted (thank you!) and it has really been a valuable tool. I could whip that out and ask the doctor to show me what he was talking about or thinking of doing, and it really helped.
I also have a list of my medications, past and present for all conditions, and another page that has my very brief surgical/ medical history since I'd get nervous and tend to forget things when asked. If you bring copies of those pages, the nurse will often just take them for your record. I also wrote down as briefly and specifically as possible how my symptoms started, and what seemed to be happening at the time of the appointment--again so I wouldn't get antsy and neglect something. I did have a couple of medical support staff tell me that they wished everybody carried that kind of thing with them since apparently it is a huge help when your history is being taken.
I also keep lists of questions I want to ask, and take notes about the answers so I remember, a tablet for more info if I get any, copies of my glasses prescriptions, and any stuff pertaining to my SOM eye or any eye in general. Every now and then, I'd bring an article that I had found to see if the doctor thought it was right-on or not. But I didn't do that with new doctors because after all, I am the patient, and they are the doctor and it seemed like a hard way to start out with someone new. If it seemed to be OK with them to be dealing with an information junkie, then I'd refer to the articles.
It is important to to ask about the doctor's experience with SOM, his/her preferred treatments, how many cases they have seen , if they have used surgery then how many surgeries have they done and what techniques do they use, what outcomes they have had, and how they think your case should be managed and why. Early-on, I don't think I did enough of that--maybe feeling a little intimidated. Later, I found that doctors are very willing to answer those questions.
There are no "wrong" questions. That is for sure.
Have you had an MRI? If not, they may start with that. Then, they would need to read that to be sure you are OK before they can get started with the SOM assessment.
The eye exams I've had involve a fairly long time (probably on average two and a half hours) and everything you can imagine comes out of the drawers and cabinets to check your vision, eye pressures, all the various ways your eyes may rotate, shake, work independently of eachother, and what prism angles occur when you are having an episode--or when you aren't. Some of the exam is familiar stuff--some is quite different. The exam is kind of fatiguing to the head and eyes, but nothing hurts, and the instruments used for measurement are very interesting.
For comfort sake, I learned to bring my coffee and a book or crossword puzzle especially if you are at a University or teaching hospital, and made sure I knew where the bathrooms were. (Coffee plus the jitters!) There will be a number of people seeing you in that type of setting, and the spaces in-between can be filled with something other than old magazines or watching kiddie videos.
Hope this helps. It just occurred to me that maybe this could be something to add (in time) to the things Juds is brewing up for us to collect and organize some of our information. A kind of outline of what to expect at and what to bring to that all-important little slice of time you have with a specialist could be a nice thing to put in there someplace.
Now my folder just sits on a shelf, ready to go with me to the eye-doc, and I don't have to re-invent all that stuff whenever I have an appointment.
Best of luck! It is exciting to be seeing someone who has the potential to help! Annie
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