Living with Chiari

Well, I got back from the neurologist today with answers, but also with more questions. I have an Arnold-Chiari Malformation in my brain. It means that the tonsils of my cerebellum descend out of the hole at the bottom of my skull and into the cavity where my spinal cord resides. Thus crowding the spinal cord and creating pressure with leads to: headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea and some other more serve things that I won’t mention here since I don’t have them.

***UPDATE***
Here is a picture of my MRI. The Yellow line is where a normal brain doesn’t descend below. The blue line marks how far mine actually is below. In measuring a few times (since we are EXACTLY sure where the line goes), we get anywhere from 17mm to 20mm descent. That is quite a lot even in Chiari terms. The doctor even told us that he called us in because this is the biggest one he’s seen in a long time.

Jess MRI

I have had this malformation my whole life. And knowing what I know now, I can look back and see the symptoms have always been there but I had no idea some of the things I dealt with weren’t normal. That is just how it always was for me, and there was no way to know otherwise.

While it is not life threatening in the least, it does pose a few problems for me. I will have to continue to deal with the symptoms for the rest of my life. Or we could have surgery to widen the hole at the base of my skull (among other things). The surgery doesn’t always work, and since migraines run in the family I still might get them, but maybe to a lesser extent.

We have been referred to a neurosurgeon, and are awaiting his call to schedule that appointment. At this point in time, I am scheduled for two more MRIs on Tuesday to check my spine for complicates that can occur from the Chiari.

Those are the results from my MRI today. We’ve got a lot of decisions to make, and would greatly appreciate all positive thoughts and prayers on our behalf.

12 thoughts on “Living with Chiari”

  1. I am definitely sending positive thoughts and prayers your way. Surgery (especially on your brain) sounds so scary but I hope you get good news from the neurologist and that they can fix (or at least help) get rid of your symptoms!

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  2. We are praying for you. I hope that you guys are able to find the best solution! At least you have a few answers now, even though it poses more questions and decisions!

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  3. hello Ms. Jessica! I am so sorry to be reading about all this, I am sending many prayers & thoughts your way hun! I hope they find an answer that gives you the relief you need!

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  4. Wow, pretty shocking news. At least you know its not life threatening and you have (hopefully) a start for finding a solution. I’ll keep you in my prayers.

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  5. Good luck Jessica! I’m glad you at least know what it is so that it can be worked on!! We hope things get better and will keep you in our prayers.

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  6. Oh my! Good luck with all that you have to deal with. So scary! I know what you mean where you just feel like all your symptoms are “normal” for you, I hope that everything will work out and you can feel better. We’ll be thinking about and praying for you and keep us updated.

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  7. Oh my! I’m sure you have run the gamut of emotions on this news. Hopefully knowing something helps a little, but it wasn’t the ‘take two aspirin and call me in the morning’ news I was hoping for you to get. Sending hugs and good thoughts to you.

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  8. *HUGS* Oh Jessica – I’m so sorry. That is quite a lot of descent. No wonder! And you’ve had those symptoms all your life? That’s crazy. I hope the other tests come back with good news. Did they say what type you have? Is it 1, the adult onset or since you had it all your life… is it one of the other ones?

    We are keeping you in our prayers! Hang in there you two.

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  9. That’s so scary. We have some good friends in our ward, and he has the same problem, which surprised me when I read your post because I thought it was kind of a rare thing. I hope you find a good doctor who can help you, and we will definitely keep you in our prayers!

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  10. I am the friend of Stevie she posted about. My husband has Chiari
    and had decompression surgery about 8 years ago. It was the best decision we could have made. If you are interested in chatting
    about our experience plese feel free to email me. We have never met anyone else who has this, and that can feel very lonely and frustrating sometimes, for both you and your husband. You can do
    this. It is overwhelming now, but things will get better.

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