Not doing better

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

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Not doing better

Postby josuesmom » Mon Apr 26, 2010 4:41 pm

My 11 year old son had Decompression surgery with duraplasty on March 15th
its been well over a month but, he still has those horrible headaches
they seem to be exactly the same or worse than before he had surgery.
they become worse when he lays down, and he is also having balance problems
and bouts of confusion.
Don't know what to do, I hate watching my son be in pain all the time
and I can tell that it's starting to take an emotional toll on him. :(

has anyone else on here dealt with this before no change in symptoms whatsoever?
josuesmom
 
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Re: Not doing better

Postby Catherine » Mon Apr 26, 2010 7:53 pm

Hi,

My 4 year old daughter, Catherine, had a terrible time recovering. She had decompression on Feb. 23 and finally started to recover the weekend after Easter. She had psychotic episodes, terrible headaches and vomiting. She ended up with ICP and had to be drained. We just saw the NS again on Thursday after 2 weeks. He told me that there has been no change in procedure for 10 years and he has not had any problem until the past few months. He has just had 3 patients that have had a horrible reaction the patch that is being used and he thinks that is what happened to Catherine. He said that the other NS he worked with also had a few cases that didn't respond well to the patch and they are now going to stop using this type of patch. I don't know if this is the problem in your case but I really would like to find out how many other people are experiencing these symptoms. Something is not right.

Catherine is doing better now, the headaches are gone, her balance is back. She still has a little nausea but she is doing much, much better. Hopefully your son will start to recover soon.

Crystal
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Re: Not doing better

Postby lttutrow » Mon Apr 26, 2010 8:08 pm

Just curious if you know the kind of patch used?? My children also have a foreign body graft, and the nsg. says she's never had any of her patients develop high icp or a reaction to the patch, but I know other nsgs. have. My children had their surgeries in 2008.
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Re: Not doing better

Postby Sara » Tue Apr 27, 2010 8:19 am

I would ask if your son could have raised intracranial pressure. It is typically worse when lying down. It often shows up after decompression surgery. Only way to diagnose it is to 1. look in the eyes for papilledema (must be done w/ dilated eye exam with an opthamologist, preferably neuro-opth. 2. direct measurement of ICP either with ICP monitoring in a hospital setting (more reliable but more invasive)or a spinal tap. Ask your doctor for more info.
Sara
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Re: Not doing better

Postby tnajk » Tue Apr 27, 2010 8:22 am

I would also encourage you to have your doctor check you child's intracranial pressure. A small percentage of people will develop Pseudotumor Cerebri after a Chiari Decompression. Let us know what happens!
Mom with 12 yr old son dx ACM1 & Pseudotumor Cerebri
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Re: Not doing better

Postby Catherine » Wed Apr 28, 2010 7:57 pm

lttutrow wrote:Just curious if you know the kind of patch used?? My children also have a foreign body graft, and the nsg. says she's never had any of her patients develop high icp or a reaction to the patch, but I know other nsgs. have. My children had their surgeries in 2008.


Catherine had the Bovine kind. I don't remember the name he gave it. I have a terrible memory so I'll have to have it written down.

If anyone else has had problems with their patches recently please let me know.

Thank you,

Crystal
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