As most of you know, Melanie had an MRI last week to rule out Chiari. We got the results yesterday and it came back positive for Chiari Malformation. What this means. . .part of Melanie's cerebellum (the small part of the brain in the back of the head responsible for balance and coordination) is protruding below the skull. This not only can cause problems with cerebellar function, but also a vast array of other possible symptoms because of the restricted cerebral spinal fluid flow in and out of the brain (the opening is blocked by the cerebellum). If you had asked me three months ago if I was expecting this diagnosis I would have said yes - which was right after my mom was diagnosed and I recognized some of the similarities. But in this journey, the doctors had convinced me that we wouldn't find anything. I was even met with resistance to getting her checked out. I'm so glad I was pushy and insisted on testing her. But even I had decided she wouldn't have it.
So, the next step is to visit with a neurosurgeon. There is no reason to do surgery unless her issues becoming severe and debilitating. Over time the space can deteriorate or different conditions can arise. At that time surgery might be necessary. It is my understanding that she would just need to be followed by a neurosurgeon with routine checkups and MRIs.
Also, Kylie is now going to have an MRI. That is in the process of being scheduled.
Melanie's neurologist found it unusual that my MRI that was done a couple of months ago came back negative. I guess it is rare for it to skip a generation and go from a grandmother to her grandchildren. She would like to look at my films when we come back to her in February for Melanie's 3 month follow up. I checked into it yesterday and the same radiologist that read Melanie's films also read mine. You wouldn't think he could have missed it. I don't have the balance issues that Melanie does, but I do have issues swallowing where food gets stuck in my esophagus and I also have a constant pain/pressure in my right ear that radiates from my neck. Both are possible symptoms of Chiari according to some research that I have done.
In this process I have emailed Julie Clark who was the featured mother on Extreme Makeover Home Edition. She and her three daughters all have Chiari and she has started a support group in Montana. I heard back from her yesterday and she gave me a very useful web site. Check it out if you 'd like to understand more:
The Chiari Institute
There is 16 hours of educational video on this web site that she encouraged me to watch and take notes. I haven't done it yet, but I'm sure I will!
Finally, here is a real life story about a family with Chiari that I found useful. If you don't read anything else, at least read this story. I see a little bit of us in all of them. (Melanie has suffered from extreme leg cramps in the past. . .Kylie can't stand to walk more than 10 feet without a stroller).
Life - StatesmanJournal.com