WTF! Chairi Malformation?


Well last Thursday I had my surgical consult. Let’s just say I was less then prepared…. but more than ready. 

Meet my hero!!! Dr. Eric Trumble… I’ve always hated living in Orlando with it being so over populated and traffic is horrible and the people are just CRAZY in this state (I was born here). But the one thing I never thought I would need was a top notch board certified neurosurgeon. So I will count my blessings, I’m pretty lucky to be in a city large enough so I don’t have to travel to see the best of the best. So we will call it a win considering how rare Chiari Malformation is. 

So how did I prepare for my neurosurgy consult? 

I cried a lot, I mean a lot. I was very mad at the world, I took it out on my loved ones and they could tell a difference (and were also getting frustrated with me).. The thing is I never quite learned how to deal with life disturbances coming from a rare brain disease ๐Ÿค”๐Ÿค” , so I wasn’t really sure how to handle my emotions. But I knew that my consult was going to give me the peace of mind I needed in order to “regain” my sanity. But what I was able to do with the help of my boo and my momma dukes was: 

  • Make a list of symptoms 
  • Ask questions- I read that you should practically interrogate the surgeon (we didn’t have to because he’s the bomb.com)
  • Bring tissues
  • Don’t eat a heavy meal before going 
  • Discuss alternative options 
  • Bring a loved one or friend to take notes (you will not retain any information) 

You’re going to do what to my brain?!?!

โ˜๐Ÿผโ˜๐Ÿผโ˜๐Ÿผโ˜๐Ÿผโ˜๐Ÿผโ˜๐Ÿผโ˜๐Ÿผโ˜๐Ÿผโ˜๐Ÿผโ˜๐Ÿผโ˜๐Ÿผโ˜๐Ÿผโ˜๐Ÿผโ˜๐Ÿผโ˜๐ŸผThat’s what I was thinking when he was letting me know our plan of action! So here’s the deal. I need a laminectomy of C1 disc and he will be doing a decompression (shave/remove bone) from my skull so my giant brain can fit in there. He will also open the Dura flap and then patch it up with my own organic tissue. ๐Ÿคข๐Ÿคข๐Ÿคข sounds fun right?! They will be shaving like 2×4 inches of hair from the back of my head ๐Ÿ˜ฑ!

Kick me while I’m down…

So with all that rare brain disease news my surgeon wants me to see a rheumatologist and get tested for Ehlers-Danlos Syndrome… ok now WTF is that?! It’s another RARE DISEASE… Come on body, why you gotta do me like that. I’ve been sooooo damn good to you. I eat healthy I work out, I take very good care of myself so why?! Well only Master J knows and I’m sure it’s a part of his plan… ๐Ÿ™๐Ÿผ

 

After emotions:

I didn’t know what to think…. now all I can think about is how am I going to pay for it? How am I going to afford my bills? I’m a single mom with a single income coming in. So what am I going to do?! I don’t know but I’m not going to give up. I’m going to fight for help. I also have to consider my kids and close family and friends emotions. My daughter is about to be 12 and she’s so scared for me. I am not sure how to take that fear away from her. I’m not sure how to take that fear away from myself. 

This Thursday I go to my primary care doctor to talk to him about the EDS and what the next step is for that. I’m going to set up my surgery for end of September or early October. 

Even unicorn moms get scared. ๐Ÿ˜Ÿ

Sincerely,

One Scared Unicorn Mom 

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2 thoughts on “WTF! Chairi Malformation?

  1. Amanda – I had no idea you were facing all of this! You have such a wonderful spirit & a great passion for life. Will have you in my prayers.

    Liked by 1 person

    1. Thank you so much! I’ve held so much fear and anxiety that blogging about it helps! And I’m hoping to speed awareness! Thank you for keeping me in your prayers! This isn’t easy but I’m a fighter!

      Like

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