Sydney's story

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Sydney's story

Postby angiesydney » Fri Feb 25, 2011 11:32 am

Hello everyone. My name is Angie and I have ACM1 (dx in Feb 2004) with a 5mm herniation. But I am here to talk about my daughter, Sydney who is 8 1/2 yrs old. She was dx in Feb 2006 with ACM 1 with an 8 mm herniation. Her symptoms, which caused us to look for the ACM were very bad headaches. Her pediatrician felt that because of my history and her being only 4 years old complaining of headaches that it was good enough reason to do an MRI. So that's when we found the ACM1. Since then she's complained of headaches often and leg pain. We tried to tell our selves that the leg pain was due to "growing pains". But more recently, over the last few months, she has been complaining of severe back pain and for 4 days this past week suffered with MAJOR leg pain in both legs. She said it started from and was mainly in the back of her knee down her calf but when she would try to walk up steps it was her whole leg. She would be ok until she tried to get up and walk. Anytime she tried she would just cry! So on Wednesday AM I called the orthopedic doc we were referred to by her pediactrician. They wanted to see her ASAP. We went,they did xrays and found spina bifida occulta he said, but didn't believe that had anything to do with anything. He said "spina bifida is often found with ACM2". I replied with, "but she has ACM1". He just said, "oh". But he says that he suspects a syrinx, so he has ordered MRI's of her whole back. So next Friday March 4 she will have several hours of MRI's looking at her cervical, thoracic and lumbar spine. We already have a follow up appt scheduled with the ortho for the following Tuesday. And I've also scheduled a first visit with a NS (who her ped referred us to see anyway for the acm to maybe help with finding a good neurologist and to have on hand if/when it is ever necessary) for the following Wednesday. So needless to say, I am scared to death of what they will find. I have no idea of what to expect (other than being talked into her having decompression) if she does in fact have a syrinx. Can anyone give any kind of input? :?:
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Re: Sydney's story

Postby razzle » Fri Feb 25, 2011 12:18 pm

make sure your Neurosurgeon is a chiari expert . where do you live? you dont want a Orthopedic surgeon . R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Sydney's story

Postby youngwife » Fri Feb 25, 2011 1:10 pm

Angie,

Hey! Welcome to ASAP. I am sorry that you've had to come here, but glad to get to "meet" you! I hate to hear of another child dealing with this condition. My daughter is 16, and she has Chiari, Syringomyelia (Syrinx), Tethered Cord, and an undiagnosed connective tissue disorder. To date, she has had a decompression surgery and a tethered cord release.

My best advice would be to do as much research on your own. You're the best advocate for Sydney, and she's really going to need you to know as much as you can about her conditions. I know it's scary and mind-numbingly overwhelming to try to take a crash course in Neurology and Neurosurgery, but you will need to be familiar with terminologies so that you can make informed decisions.

The thing is, there are MANY varying opinions and approaches to these conditions. And, unfortunately, you can't always believe what a doctor tells you. There are some very excellent Chiari/SM doctors, and then there are some that know very little, yet think they are experts. So be careful and be wise!

I have really benefited from The Chiari Institute's website. It has a lot of wonderful patient educational videos. Also, www.chiarione.org is very helpful, too.

There are tons of great resources here on the web, as well as books that have been written by Chiari patients. I would encourage you to do as much as you can to learn about the conditions, if you are not already informed.

It sounds like you have a good pediatrician that will support you, and that is very helpful.

I don't know if anything I have written is helpful, but I am sorry that you're sweet Sydney is suffering. As I type, my daughter is hurting and has nothing at all to help her pain. This is such a difficult condition to live with.

Blessings to you,

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Sydney's story

Postby angiesydney » Fri Feb 25, 2011 2:04 pm

Thank you both for your posts. I really appreciate the opinion and kind words.

Razzle, (I recognize your name from other forums over the past few years.. I used to use the name brainab). :mrgreen: But anyway, the only reason we saw an orthopedic doc was because her ped suggested it. But I am glad we did, if nothing else, just because he saw us so quickly and we already have the MRI ordered. I'm just so sorry that I let the back pain go so long before calling the doctor. But we do have an appointment with a neurosurgeon the Wednesday following the MRI's. As to whether or not she is a Chiari "expert" I'm not sure of. I mean I asked the question "Does she work with many Chiari patients?" And the receptionist answered "Oh, yes!". Please, if there is something else that I should be asking I am all ears. I'll take all the pointers that I can get!! We live in the Pittsburgh PA area and the NS we are seeing is Dr Stephanie Greene. And don't worry, I will not be making any hasty decisions regarding decompression. I am not totally sold on the idea. When I was dx they told me I had to have decompression right away. I was referred to Dr Ghassan Bejjani, who just so happens to be the best and world known. We scheduled the surgery and THEN I began my research. Once I read about symptoms and others that have gone through the decompression, I decided that it wasn't worth the risk. BEST decision I could've made for myself. I've been able to manage my symptoms pretty well. I may have like 4-6 bad weeks a year, total. That I can live with. For now. But my little girl, that's a different story. I can't stand the thought of what MIGHT be and what she'll have to go through. I'm having trouble thinking of anything else. She is my only child and she is my world. I just don't understand why she has to have these things wrong with her. She has ACM, she also has a heart condition. And now she might have syringomyelia. I'm sure you all have asked yourself the same questions. I'm sorry, I'm ranting. Just feeling overwhelmed.
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