So today will be day one of my new medication. I'm supposed to take it tonight at bedtime. I'm feeling really good about how the appointment went yesterday. The only problem I really have left right now is that I REALLY need to educate my mom about TN. She has absolutely no knowledge about TN besides some of the things some of her patients at work have told her (and trust me that isn't much). Yesterday at dinner I tried to explain to her that most of the time TN is caused by a blood vessel touching the nerve and she didn't even entertain that notion. She acted like I had absolutely no idea about what I was talking about. I have done so much research on TN lately that I wanted to scream when she said that. I feel like she needs to learn more so she can be an advocate for me when it comes to helping me decided on treatments or whether we should be getting a second opinion. She doesn't want to though and thats the most frustrating part. Once I'm eighteen I can make these decisions on my own and she doesn't need to be around but for now she really needs to know the BASICS of TN so we can get something accomplished in the two moths before my birthday. She's already being so negative about me taking the medications too. She says I won't last a week on them because they're going to mess me up too much. If she was that concerned she would do some research and find a better option (i.e. gamma knife, injections, MVD) rather than being a pessimist. I'm trying so hard to stay positive and she's being a poo. Does anybody have any suggestions on how to convince her to learn more? I was going to buy the book Fighting Back but its so expensive and I doubt that she'd read it if I gave it to her. I just want her to have some knowledge so she doesn't say the wrong things at my appointments and make the wrong decisions for me.
So sorry to hear that your mom is being so unsupportive. Didnt your mom go with you to see the neurosurgeon?. What was her reaction and response to what doctors said?. Sometimes parents dont want to believe that their children have some serious medical conditions and block it out by denial. Is this out of character behavior for her or is she usually not very supportive?
Give her this website to read http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/
But remember pixelkam, you can’t force her…you know enough yourself to advocate for you…and maybe you can enlist another family member to help as well. I know it’s frustrating but until she’s ready to open up to more info, there really is not much more you can do. Tell her how you really feel, and maybe she’ll be more open to learning.
Best of luck, Mimi