Long-term outcomes

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

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Long-term outcomes

Postby Jwbimpa » Fri Apr 04, 2008 1:39 pm

This is my first post. We recently learned my 16-year-old daughter has syringomyelia extending through cervical and lumbar regions. No Chiari. She had lumbar MRI last night and we are still awaiting results to see if she has a tethered spinal cord. I have jumped into action and made 2 neurosurgeon appts: one in NYC and one in Phila. In the meantime I am consumed by this (as I am sure you all have been with your own situations)! When I received the ASAP information packet ansd saw the woman in the wheelchair I was devastated. The information that seems to be lacking in the medical literature is the long-term outcomes in children who CM/SM. Can anyone share their experiences? Also any experience with neurosurgeons in Phila (St. Chris or CHOP)? I have contacted the Chiari Institute but their somewhat long wait and out-of-network costs are a concern.

Any information anyone can provide would be so appreciated!
Jwbimpa
 
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Postby angie7 » Fri Apr 04, 2008 8:12 pm

First thing is to take a breath. Many never need to use a wheelchair with this disease, but some do. I do not have a child with this condition, only myself but from what I can gather, the earlier you are dx and showing symptoms, the more of a reality a wheelchair becomes. I'm sorry, I know you didnt want to hear that but....this may not be the case for your dd. No one knows with this disease. No one knows any long term answers. The only thing we can do is focus on today and not worry about tomorrow.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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hi and welcome

Postby Sara » Sat Apr 05, 2008 4:13 pm

Welcome to ASAP. Unless your daughter is presenting with very acute symptoms, remember that SM is a very slow disease process and the most important thing you can do is take your time and don't make any rush decisions. If at all possible, I would encourage you to attend the ASAP conference in the DC area this July. You will learn a lot and be able to hear a wide range of neurosurgeons who have varying opinions all in one place.

Also, be sure to check out ASAP's resources including the tapes (which are all on sale for only 5.00) DVD's and conference notebooks. http://www.asap.org/shopping.html There are several titles pertaining to children.

As I mentioned, SM is a very slow disorder in most cases. We have made great strides in treatment in the past 8 years. Patients do better after surgery than ever, especially if the right surgery is done.
Sara
Hope and Holly's Mom
Sara
Site Admin
 
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It will all be okay!

Postby giglykatie » Sun Apr 06, 2008 7:32 pm

I was diagnosed with a C5-C6 syrinx, no Chiari malformation about a year ago following a fall in gymnastics at the age of 22. I apparently have had it my entire life. I had weakness, numbness and all that jazz after my fall. My only current symptom is the pain I have because of it. It is generally manageable but sometimes I do have to take time out and try to relax to decrease my pain.
Syringomyelia, though it can be severe, is on the cutting edge of medicine as more and more physicians recognize the symptoms and treatments.
For your child's sake, be optimistic and remember just how special they are to you...regardless of their condition.
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Postby angie7 » Mon Apr 07, 2008 12:38 pm

giglykatie--

Have you been evaluated by a SM specialist? The "I apparently have had it my entire life" sounds like a pretty standard answer from a local doctor that is not familiar with how SM works. About 1% of syrinxes are idiopathic, meaning no known cause. Chances are, there is a reason why your syrinx is there and your current doctor is not qualified or knowledgeable in this area to find the correct answer.

I too was told that my syrinx was something I was born with. Told to my face from the "#1 NS in my town" that I did not have CM and they couldnt help me until I was unable to walk. Thank goodness I didnt listen b/c I might not be here typing this right now. I sought out a specialist (Dr Oro) who dx me with CM, turns out I had no csf flow to my brain, I could have died or had a stroke at any time. I was 24 years old.

If you havent sought out a specialist, I highly encourage you to do so.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
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Location: Florida


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