My mother required a 2nd surgery in November to fix her patch, and she had her follow up appointment last week.
She had to travel to Cincinnati Ohio, where her surgeon is. I wasn't able to go with her, but while she was there, she asked her surgeon to look at a few of my MRI pictures which she has on her phone. She didn't tell him about any of our suspicions, simply asked what he thought of the pictures. He said "well, it doesn't look good. It's Chiari". As most of us here know, an MRI can clearly show crowding and the beginning of herniation, even if there is not the "proper amount" of herniation for a diagnosis from a regular neurologist.
He said I should make an appointment for an exam, probably including a cine MRI.
Although I hate that she has Chiari and has had to go through everything she has, thank goodness my mom understands. I'm not sure what I would do without her. When it comes to Chiari, I don't have support at home. My husband thinks this Chiari specialist is a quack because he determined that it's Chiari from pictures on a phone. It seems like every time I try to have a civilized discussion with him, he gets frustrated and it turns into an argument. I'm pretty sure he was hoping that whatever condition I might have could be treated with just popping a pill every day. I know he is afraid for me to be sick, and he is afraid of the possible need for surgery in the future.
What he doesn't understand, and I've tried explaining to him, is that I feel like I am deteriorating pretty quickly. I think back to even a year ago, before my car accident. I've had some of my symptoms for years now, but I feel like everything has taken a rapid turn for the worse since last December. Even my "good" days are still plagued with headaches and severe neck pain/pressure. Bad days are so bad it takes everything I have just to get up, get dressed, and drag myself to work. I am lucky enough to have a job that doesn't require anything physically strenuous. But sometimes even walking is a challenge. More and more, I have to adapt what I can and can't do according to my symptoms. I dread even having to bend over to pick something up. I miss being able to exercise without feeling like I'm dying for the rest of the day. And over the counter medicine doesn't help my pain in the slightest.
I feel overwhelmed because we require 2 incomes, and I know I can't afford to take months off work for surgery with no income. Are there resources that I can use to help with the financial aspect of being off work for extended time?
I know my husband is just worried and afraid, and this is basically the only topic he ever gets upset and defensive about, and that we constantly disagree on. It's like he loses his mind as soon as the word "Chiari" comes up. I've offered to put some info together so he can better understand the disease, but he doesn't want me to. I was wondering if anyone else has dealt with this, and how did you help your spouse to understand? I know I can't MAKE him understand (although I wish I could :P). Any suggestions are appreciated. We have a great marriage, and I don't want this to become a regular argument.
Thanks for reading my rant :)