So I started off getting answers for myself, finally submitting my information to WI Chiari Center. Been back and forth with them on phone calls, Dr. H wanting to know more about my Duraplasty. So I'm still in limbo there.
Then my daughter has been extra clumsy lately. I just figure she is a teen, they do that. She fell down the stairs at the high school. Small injury all is well. Then comes a 3 day headache followed by a blackout. I think the black out came from pain? Or from positional changing? So I get her in ASAP.
Dr sits me down and says it appears your daughter has Chairi looking at her last mri. He wants a new one to see how it has progressed. As he feels her symptoms have obviously gotten worse.
When it's me getting news about myself, I can take it! I've had some bad luck over the years with my health. It's like I'm immuned to it. But my daughter...NO! I'm having the hardest time and I have to be strong as she is scared.
How do Parents do this? Keep that game face? I need some supports! Had a hard time this week with processing all of this.
To ice it, as a bit of comedy....My coffee pot broke this morning! We live in the country, so I can't just quickly run into town to get a cup! LOL...one of those ARE YOU KIDDING ME moments!
I have started this message several times. Look at this from a positive view. You are a Chiarian & now even though your daughter has been diagnosed with CM, you already know more than 99% of parents facing the same situation. I know you are still scared and worried. We are Mothers that is our first response. How do you keep the Game Face ON??? Easily you reach inside & take a deep breathe and know your daughter will gauge her emotions on yours, especially since you are a Chiarian. Children & Teens have a better outcome if surgery is needed. You had what I would definitely consider a positive surgical experience. You have all of us for support & understanding. We will not leave you alone. I promise. Your daughter will get treatment & be much better. That should be your focus. I know it's incredibly hard, but I also know you are a tough , intelligent & determined Lady. Your daughter is going to be Great & you will step back and be so glad she was quickly diagnosed & treated.
Please Always Know ...This whole forum is here for you,
I would also look at it this way. Can you imagine if you or any of us had been treated when we were your daughters age? We would be so much better if we had gotten great care that I am sure your daughter will get now because she has such a great informed mom. Kids do so much better and haven't had decades of damage like we have. I know it seems overwhelming but who better to help your daughter through this than you? We are all here for you and we are praying for you.
You guys make it much better! I’ve cleared the rough path for her, as far as answers go.
I’ll check the parents group out! And I do not know if I have ED???
I truly appreciate your words of wisdom.
So sorry to hear about your daughter! That would be tough news to swallow! Luckily they have caught it while she is young so outcomes will be better for her.