Syrnx progression

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

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Syrnx progression

Postby jennasmom » Wed May 30, 2007 1:17 pm

Hello out there,

My 8 year old daughter Jenna has been diagnosed w/Chiari and syrngomyelia. We are scheduled for decompression surgery on July 14. She has what has been described by 3 different doctors as a very large syrnx which is at the higher cervical level. My question is does anyone know how quickly the syrnx can progress, I am concerned that 7 weeks is too long to wait. She is currently symptom free (with the exception of her scoliosis). Does anyone out there know if the progression is likely to move slowly, quickly? I am terrified that she will wake up one day and not be able to move. Any info would be so appreciated.

Lisa
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Postby lalaswihart » Wed May 30, 2007 4:54 pm

Hi,
I have a 7yearold with CM1/Sm she was decompressed Nov 27.06 since then her SM has gone from 5mmin cerv to 9mm and 4mmin thro to 7mm, i don't know if that is common, this was three months after surgery, she now has more issues and we have an appt. in New York,

I would just watch her and limit activity to help with any pain. Good luck i am not sure if this helps but we will keep her in our prayers
Laurie :)
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progression

Postby Sara » Thu May 31, 2007 6:38 am

Hi and welcome.
I'm sorry you are having to deal with this dx. I know it can be tough. Syrinxes progress very, very slowly most of the time. There are rare reports of rapid progression of symptoms but these are unusual. We have adults diagnosed very late in life with very large syrinxes and it is believed these from in childhood.

I know of one girl who had a very large syrinx and minor symptoms and the family had not decided if surgery was needed yet. the girl was swimming and lost use of her arm and had immediate surgery. She did recover with no residual damage. So, especially with children, even if your worst fears are realized, it can still have a very happy ending.

It is an anxiety producing disorder. I remember well when my 2 year old was diagnosed. I was constantly worried about progression. Now after 10 years of dealing with it I hardly think about it. I think this is a normal phase that all people diagnosed with a progressive condition go through.

My advice is to focus on the positive: some syrinxes never progress, and some spontaneously resolve. Your daughter could be in those categories just as well. Also, remember that even if the worst does happen, the emergency room never closes, and if need be an emergency surgery can be performed. But the odds are far greater that won't be necessary at all.

Sara
Holly's mom
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