questions about 5 year old who had decompression recently

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

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questions about 5 year old who had decompression recently

Postby EHF » Fri Feb 19, 2010 11:23 pm

Hi - a friend told me about this website. Its wonderful - I wish I would have found it sooner!

A little history...

My son has always been "crabby" after activity but we didn't know why until this past year when he started consistently complaining of headaches. Additionally, last Spring he started having increased choking/gagging episodes with aspiration diagnosed by xray. He also had shoulder and neck pain that seemed to come and go. As time went on, the headaches seemed to get worse. We saw a neurologist last September. He initially said migraines and, although he offered an MRI, I didn't think it was necessary. My son started migraine meds that seemed to help a bit but definitely didn't make the headaches go away. Sometimes they were so severe that he would arch his back in a way that was not natural (that almost prompted me to take him to the ER on more than one occassion). The neuro asked me to keep track of headache triggers and during our follow up appointment I told him they were definitely associated with activity. In the meantime, he also began to have intermittent hand weakness. With that, he ordered an MRI. After the MRI, my son had a choking/gagging episode which then caused the severe back arching. Since we were in recovery at the hospital, it was witnessed by several RN's and docs, all of whom found it to be somewhat significant.

The MRI showed a chiari malformation. Our neuro said the images showed the area was quite crowded and it was his opinion it needed to be corrected. He referred us to a neurosurgeon. Based on the MRI and his symptoms (gagging, aspiration, shoulder/neck pain, back arching, hand weakness and headaches), he recommended surgery. Within two weeks, my son had his decompression surgery. They removed part of the foramen magnum, opened the dura and discovered some adhesions - the cerebellar tonsils had formed adhesions to the dura which the NS removed. He removed at least part of C-1 (I'm actually unclear about this part of the operation) and the surgery and initial post-op was uneventful. He had trouble walking at first but we were discharged from the hospital after 5 days. He has done very well and his post-op pain continues to improve.

However, I have a couple of questions. He is complaining of dizziness, especially after he walks up stairs or is sitting upright for long periods of time - is this normal? He also seems to have have hearing "issues." He's only 5 so its difficult to know exactly what he means but it sounds like his hearing is diminished at times (generally at the same times he has dizziness). Also, even a little activity is still provoking headaches/neck pain. Sometimes he says it feels like his incision site is about to "pop open." Are these normal post op issues?

I'd appreciate any insight. Thanks in advance!
EHF
 
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Re: questions about 5 year old who had decompression recently

Postby wondermatx » Sun Feb 21, 2010 11:18 am

yes, but i would just give him neurosurg. a heads up...aftr my decompression, i had ringing in my ears, dizziness, spasms, that would just make u cry, but it does get better...but I would let his NS know, and make sure, that they do a follow up mri 1 yr later.
wondermatx
 
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Re: questions about 5 year old who had decompression recently

Postby wondermatx » Sun Feb 21, 2010 11:24 am

kiddos heal a little differently, but what u will find is that when all have different recovery rates, some all of us all of our symptoms are relieved, some of us have new ones, and some at least, for myself, mom, son and daughter all had decompressions are symptoms are lessened and we have a better quality of life....welcome to this site...
wondermatx
 
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Re: questions about 5 year old who had decompression recently

Postby EHF » Mon Feb 22, 2010 4:55 pm

Thanks everyone!

He's doing better pain wise the last couple of days but then today keeps complaining that he can't hear and said his eyes "weren't working" intermittently. I tried to ask him to elaborate (nearly impossible with a 5 year old boy) and it sounds like either double vision or very blurry vision. I'm just not sure if this is normal or not. I've called the neurosurgeon's office. I hate to worry about all of these little things but, at the same time, I'm not sure if its normal or not (and I HATE the guessing game!).

Anyway, thanks for all of the advice. I'm so glad I found this site!
EHF
 
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Joined: Fri Feb 19, 2010 9:44 pm

Re: questions about 5 year old who had decompression recently

Postby nature » Sat Feb 27, 2010 12:28 pm

HI,

My daughter was just decompressed last week. She is 13. She had several episodes of dizziness, headaches and vomitting after the surgery. My NS said the with the flow of fluid trying to return to normal, this can cause all kinds of symptoms. The first couple of days she was up, I even noticed her leaning to the side when walking. She is doing much better the past couple of days and is wanting to do everything again. I m still trying to make her relax but it is very hard.
nature
 
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Re: questions about 5 year old who had decompression recently

Postby lcolangelo » Sat Feb 27, 2010 3:43 pm

My 3 year old was decompressedon Feb. 9-- He is still complaining of headaches-- especially after laughing, shouting, crying or talking loud-- he will grab his head and cry. Last night he grabbed the back of his head and said--"ow my head is shocking me. " I'm thinking it's just still healing-- but I have the same questions you do!! Hope your little one is doing better!
Lisa
lcolangelo
 
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Re: questions about 5 year old who had decompression recently

Postby EHF » Sun Feb 28, 2010 12:44 pm

Thanks everyone. I think my DS is slowly but surely improving. He has some double vision with exertion and sometimes headache too but it seems like its getting better (hard to tell, though, with vague descriptions from a 5 year old!).

He's just about a month out from surgery now so I'm giving everything another week or so before I get worried.

All in all, though, he's been okay. Thanks for the replies. Its good to know I'm not alone!
EHF
 
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