8 year old just diagnosed with CM and Syringomyelia/Scoliosi

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

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8 year old just diagnosed with CM and Syringomyelia/Scoliosi

Postby kj's angels » Wed Aug 15, 2007 7:45 pm

Hi,
I'm brand new to this and not sure how it works. I'm desperately looking for some responses to my situation. My 8 year old daughter has had scoliosis for most of her life. We went for a check up and found that the degree has gone from 15 to 26. Through an MRI they discovered a syrinx and proceeded with another MRI to find she has chiari malformation type 1. I'm just learning about this in the last 24 hrs and I would love some input from others in similiar situations. We live in the DC area and will be seeing a pediatric orthopedic specialist tom. and then be referred to a pediatric neuro-surgeon. I could use some guidance!
Thanks-kj's angels
kj's angels
 

Postby haylb » Thu Aug 16, 2007 6:46 am

Hi

I live in the uk so hospital procedures are a bit different to the US, but my daughter who will be 8 next month has scoliosis (curve approx 60 degrees), she has been braced a year.
She also has CM and a syrinx, she had decompression surgery in may and we go for a follow up MRI scan next week to see if the surgery has been a success and if the syrinx has shrunk.
I can't really answer any questions relating to hospital procedures etc but anything else you need to know -just ask -I'll be pleased to help

Hayley
haylb
 

Postby emarismom » Thu Aug 16, 2007 3:57 pm

kj's angels,

Sorry to hear about the diagnosis, I was in the same position 3 years ago
when my daugther was five. She is now 8. She had a 28 degree scoliosis curve, CM, and SM. She was decompressed in Nov. 2004. Her scoliosis did improve some after the decompression and the SM has gotten alot smaller (but it is still there). Her curve went down to the 20-25 degree range over the last three years. I had her put into a Spinecor Brace this past June in hopes of improving the curve before her next growth spurt. I'm not a big fan of the "watch and wait" attitude. As far as the CM/SM go, she had very few symptoms prior to except the scoliosis. Occasionally her legs get very weak which I believe is related to the SM. I do believe that the decompression surgery SAVED my daughter's quality of life. Her syrinxes were so extensive that nuerological damage was just a matter of time.

Did the orth recommend bracing? If so, what kind?

I'm not familiar with any doctors in DC, but if you have any questions,
feel free to ask. Its very difficult to come to terms with all of the issues
you will now be facing.
emarismom
 
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Postby kj's angels » Thu Aug 16, 2007 6:15 pm

Thanks so much for responding. The ortho recommended a night brace, but doesn't want to start this until the neurosurgeon gives his opinion on the cm and syrinx. She has one syrinx in the thorasic spine and he didn't indicate the size. Did your ortho recommend the decompression surgery?
Katherine
kj's angels
 

Postby emarismom » Fri Aug 17, 2007 6:26 am

Katherine,

My ortho wouldn't do anything with Emily until we saw the nuerosurgeon. He was the one who prescribed the MRI and as soon as he got the results he called me to tell me to see a nuerosurgeon. I had gotten copies of the MRI films, so the next day I did take them to him so he could review them with me. But as far as any type of medical care, he wanted to wait
as the CM/SM must be dealt with prior to the scoli. We live in Miami and have a group of five NS's less than two miles away. I saw two of them the next day and 1 the following week. They all told me the decompression was necessary. She was decompressed within the following month. After that we stayed waitng and watching the scoli and
to see if the SM would reduce. Thankfully it did.

There are many NS who do not operate until they feel that the SM is causing "enough" symptoms. There is not a clear point at which "it is the right time to operate". You may get many opinions and each doctor will be a litttle different.(That wasn't my situation, but I have seen it many times on the boards). After you see a few NS's, then you will need to
decide what you feel is best for your daughter given her current symptoms and the likelihood of those symptoms getting worse. I will tell you that scoliosis related to CM/SM does tend to progress rapidly. Also neurological damage caused by SM cannot be undone. So if your daughters symptoms are getting worse, than surgery may be recommended.

I see two ortho's regularly (just a little obsessive). Neither wanted to brace until we got to the 25 degree point. In order for me to get her in the Spinecor, I had to handle things myself and pay for it too. Needless to say, making that decision was not easy. But her curve is better in the brace, as is her posture. Even if eventually her scoli progresses to spinal fusion, I know I have tried everything to prevent it.

Good luck and my thoughts and prayers are with you.

Michelle
emarismom
 
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Postby PandR'sMom » Fri Aug 17, 2007 10:40 am

Hi, Katherine. I'm sorry to read about your dd's diagnosis.

My 10yo dd was diagnosed with scoliosis almost 2 months before her 9th bday. She had gone from perfectly straight at 8yo to a 20 deg curve in less than 10 months. Her pediatrician took an x-ray and referred her to a pediatric orthopedic surgeon. He, in turn, took one look at her and sent her for an MRI. When the MRI results were finally looked at by his nurse (long story short ~ they were on her desk but she "hadn't had a chance to look at them yet") we were referred directly to Dr. Frim. We saw him in August and scheduled decompression surgery for October 24th. She had the surgery and was out trick-or-treating exactly one week later.

My husband and I decided to give her some time to heal from surgery and to see how her syrinxes looked (she was at C4, C6, and C7-T10 pre-op) before going back to the ortho. At her 3mo post-op check, Dr. Frim said it was probably time to head back to the ortho and see what was going on with the scoliosis. Her syrinx at C4 was gone, C6 was greatly reduced, and C7-T10 had thinned markedly. We saw the ortho in late February. While her curve hadn't really progressed (20 deg to 23 deg, but there is a 3 deg "margin of error" where they won't call it progression, and the x-rays were taken/read by different people), the decision was made to put her in a night brace. She has been in the brace since late March. We saw the ortho last month and her curve is now 22 deg (again, we have to take into account the "margin of error"). When we saw Dr. Frim the week before the ortho, her syrinx at C6 was completely gone and C7-T10 was down to a short thin thread. With the syrinx gone there is a greater chance of halting progression and possibly even getting some correction of the curve.

Since you are in DC, I would imagine you'll want to check out TCI for your dd. I don't know much about them as we are lucky enough to live in the Chicago suburbs and all our doctors are affiliated with the University of Chicago where Dr. Frim is. Then again, after having met and dealt with Dr. Frim over the past year, I would travel around the world to take my children to him.

Good luck to you and your daughter.

Kim ~~ mom to Patrick and Rebecca
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