anyone with shunt experience?

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

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anyone with shunt experience?

Postby AtlHoops » Wed Aug 22, 2007 1:55 pm

My now 8 year old daughter was diagnosed with CM / SM last October. In December she underwent decompression surgery and has healed wonderfully but we found out 3 months post op that it was unsucessful, the situation is unchanged. I have taken her to an orthopaedic surgeon and he showed me that her spine is beginning to curve. Our nuerosurgeon is now talking about placing a shunt in the syrinx to drain the fluid. Anyone aware if there are different shunts, locations for placement or if this is even a good idea?

We are in Atlanta and love Dr Boydston but I feel that I need another perspective.
AtlHoops
 

shunting

Postby brianfsmom » Wed Aug 22, 2007 7:51 pm

Hi

It sounds like you are living out what we all fear - the failed surgery. I always go into each MRI in a state, worried what I would do if I got that news. I know the first thing I would do would be to seek another opinion. Not that another decompression would be something I would want either, but if there was a problem with the decompression that could be easily corrected, I would find that preferable to a shunt, which I view as a last resort for syrinx...shunting for pseudotumor cerebri is a different story.

Good luck with your daughter. I know that was not the news you hoped for -- also sometimes a syrinx will take longer to shrink. Is she symptomatic? How is the flow around her brain as compared to before decompression?

I hope this is helpful in some way.
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Postby lovemyblessings » Wed Aug 22, 2007 11:20 pm

My son, Keegan, has Chiari and PTC. I do not know about shunts for syrinx, but in general I know that there are LP (from the back to the abdomen) shunt, VP shunts (head to abdomen) and VA shunts (from the brain to the area around the heart). That's all I can think of right now.
~Dawn~
Blessed Mommy to six amazing blessings here with us
John 10, Marah 8½, Keegan 7½, Luke 5½, Quintin 4½, and Ruth 3
Caleb Logan expected in August and
And three blessings waiting in Glory, including Selah Marie born @ 17 weeks 4/15/2009
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Postby emarismom » Thu Aug 23, 2007 6:02 am

At my daughters last MRI, three and a half years after decompression, her syrinx was still shrinking. The NS actually said that he hadn't expected it to shrink more this year. I think the tendency may be to have the most reduction of syrinx in the first months to year after decompression, but the syrinx can continue to shrink.

Personally, I would only let them put in a shunt as a last result and I would definetly try to get another opinion.

If the curve is starting to progress, have they recommended bracing. If so what type of brace? My daughter is 8 and is in a brace and is doing very well.
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shunt

Postby Sara » Fri Aug 24, 2007 6:29 am

I think your instincts to get a second opinion are right. You might try Dr Jerry Oakes.
W. Jerry Oakes MD

Children's Hospital of Alabama
1600 7th Ave. S. ACC 400
Birmingham AL 35233-1711
United States Phone: (205)939-6914
Fax: (205)939-9972
Sara
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shunts

Postby chiarimom » Fri Aug 24, 2007 10:16 am

I agree that if there is any question a second opinion is the way to go. You can check out the recommended dr's list for possibilities to choose from.

If it were my daughter I would look at every possiblity before placement of a shunt. This isn't to scare you but shunts do come with issues and a long term commitment.

If any of us can help you further please do not hesitate to ask. We all feel for you as we have had children go through these issues and none of them are easy issues to understand. I also find it more difficult to make a decision for my child -- vs. a decision for me.

Faith
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