God I'm so nervous. The appointment is tomorrow and I'm so worried I won't get any answers. I'm scared that if I answer one question wrong I will be called a liar and dismissed. All I want is to go back to having my normal life before this awful escalation on my TN. I'm honestly open to anything that will give me some relief. I wish I could have all of you by my side when I walk into that exam room so you could tell the doctor that I'm not a liar and that I need help. My mom says if we don't get the answer we want I can go to another local hospital once I turn eighteen and try again. I really hope that doesn't happen because my birthday isn't until the end of November and I was hoping that if I need any sort of surgery or treatment that would involve being down for awhile I could do it over winter break.
If anyone reads this I have a few questions:
Does anybody remember the types of questions that you were asked when you went to see your neruo?
Should I bring up my preference for a MVD rather than being on meds for the rest of my life?
Are there any key things I should say to really push the fact that my TN is real and that it is affecting my quality of life/school work?
Dont get yourself all work up and nervous no doctor is going to think you are a liar.The doctor is going to ask you to explain your symptoms....the type of pain you are experiencing,...how often..what have you tried to relieve the pain...any tests that have been done...your medical history etc.If he has experience with TN he should have a good idea that TN is your problem based on your symptoms. When I finally found a neuro, 30 yrs ago, who knew what TN was he diagnosed me simply by my description of my pain. He will probably send you for an MRI but most times they are inconclusive. Doubtful he will suggest MVD until you try various meds , if you havent already, to see if they will give you relief. Surely tell him how adversly its affecting your life but again if he is experienced with TN he will know . I would suggest that you write down any question that you might have so you dont forget when you are at the doctors. Hopefully he will impress upon your mom how painful and serious your condition actually is. Good luck and lease let us know how you make out....Ed
here's how the appointment went (I posted this as another blog entry as well)
Well, after one very long and painful week of waiting, I finally had my neurologist appointment. Dr. Young seemed very nice when he walked in and he really seemed to listen to what I was telling him. He did his tests (which included touching my face with a tissue which was EXTREMELY PAINFUL) and then he asked me a lot of questions before finally confirming that the second and third branches of my trigeminal nerve were acting up. The paper he gave me says Trigeminal autonomic cephalgias? He said that he wanted to try me on some medications and that he didn't know how long they would be able to last before i broke through again, he prescribed me Gabapentin (Neurontin), and said to start off with a small dose for a week and then increase for the next week and then again the week after that. He said that just reducing my pain by at lest 50% would be a victory (I'd rather have it gone but he's right) He did say that if it is really messing with my head that I should call him and we'll try something else or weigh my options. I am very sensitive to medications so I have a pretty good feeling that he will be getting a call from me within the next few weeks. He also wants me to do this Bio talk program where I go to the hospital and I talk about my pain and I can see my brainwaves and heart rate while I'm doing it? He thinks talking about the pain will help keep me less stressed which might reduce the number of attacks that I have (did I mention he's also a neuro psychiatrist?). I don't really know how I feel about that one but it is worth a try. So all and all I think the appointment went well. I believe that I have a pretty good doctor right now and hopefully he will be able to help me to find something that works. He didn't bring up any "surgical" interventions so I'm not sure if he knows about them or if he just wants to wait and see if the medication isn't going to be a good fit for me.