Juliannes Journey

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Hi, my name is Julianne. I am 11 years old. I was diagnosed with Arnold Chiari Malformation (ACM for short) and syringomyelia. ACM is a rare brain disorder in which your brain slumps down into your spinal cord. Syringomeylia is basically just a fluid filled pocket in your spinal cord. I also have scolisis. Scolisis is when your spine has a curve in it. This is my story all about my journey. I have had back pain, headaches, pins & needles in my feet and hands, and some dizziness ever since I could remember. And since I have had it ever since I could remember, I always thought that those pains/ feelings were normal and that everyone had them. But then one day, my pain all of the sudden got really bad.I was six years old. I can remember I was at the grocery store with my mom and I kept complaining, MY FOOT MY FOOT THERE IS NEEDLES IN THEM. My mom was kinda like "ok?" because I had never told her because like I said, I was used to it. So, my mom took me to my primary doctor.I told her all of my pains and where they were. She looked at my back and said, we need an x-ray of her back, I see a little curve. So, I got the x-ray and the doctor says, "you need to go to an orthopedic doctor Julianne has scoliosis..it is only 6 degrees but she at this age shouldn't have any pain in her back or any scoliosis." So, my mom took me to an orthopedic and he looks at the x-rays and I think I got an MRI, I'm not sure, but anyways he looks at the films and says " Julianne has Arnold Chiari Malformation and scoliosis, go to Boston right away!" At this point we are kinda like "WHAT, Chiarai what?
We went to Massachusetts General Hospital in Boston. I saw a neurosurgeon. He got a good look at my MRI's and said " well, Julianne needs a decompression surgery pretty soon. She not only has Chiari but also a syrinx in her spinal cord." At this point I am crying because I am scared, and of course my parents are trying to be brave for me. But, what was a little crazy was I could remember just being scared of getting the IV, but at this point with all that has happened and surgeries and stuff, there is a lot more to worry about than a little IV!! But anyways, six weeks later ( May 28th 2004) I was on the operating table getting the decompression.

It helped my brain but not my pain.

After my decompression surgery, I went to see an ortho at Mass General for my scoliosis. He looked at my previous x-rays and then took new ones. My scoliosis degrees was now 25 compared to the last x-ray which was 6. Now, that went up in only a matter of about 4 months or so. So, I got fitted for a Boston brace. Which I hated so badly! I had to wear it 18 hrs a day/night. The worst part was, the name calling at school.."brace girl, surgery girl, plastic back" the list goes on and on. It was horrible. It was so painful and you could see the outline of the brace through my shirt, so of course kids pointed at me laughing. It was a nightmare! So, I wore that for about 7 months. Then I went to follow up with my doctor and I asked what I could do about the Boston brace because of everyone at school. He helped me out. He got me fitted for a Providence brace which I only had to wear at night time. It was much more painful than the Boston brace but at least I didn't have to wear it to school! I started the Providence brace in October 2006. I had a follow up sometime at the beginning of 2007 and my scoliosis had gone up to 48 degrees as oppose to 25!! The ortho was talking about possibly getting rods but then I went to my neurosurgeon for an appointment and he and my ortho decided on the tethered cord surgery. I had tethered cord surgery on June 18th 2007. My doctor said that the tethered cord surgery should help the scoli. So, I had that done.

Well, it didn't help my pain. And we don't know if it helped my scoliosis yet because we haven't gone to a new ortho yet. I have not worn my Providence brace since my tethered cord because of my back pain. We have switched our care over to Childrens for some other reasons. My mom is going to make an appointment to check out the scoliosis. I recently had a chest x-ray and the radiologist said that the scoliosis looked pretty bad.
I have learned (and continue to learn) that dealing with medical issues is very hard. Trying to be brave day after day after day. Going to a doctors office praying so hard that they can figure out what's wrong and fix me, but I know that its probably not going to happen.
I continue to have pain 24/7 and no doctor really knows whats going on. But, my mom always reminds me that I have to stay strong and fight for my right to be pain free.
As my mom always says, since its not my day for a miracle, its somebody elses.





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Bethani said...
Jun. 14, 2010 at 10:48 pm
I'm sorry. :( I have scolosis too. I know how you feel about feeling pain and it just seeming normal. 
 
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