Surgery Update

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

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Surgery Update

Postby lttutrow » Sat Jun 28, 2008 7:44 pm

All went well during the surgery!!!! He is already out of ICU and on the floor. He was awake for a short time finally this evening, he's responded to questions before this, but not really been awake. Dr. Smith said that his anatomy was unique in that area of his head. His C1 bone was so thick that this was adding to the problem and limiting the amount of room that was back there for fluid to get through, and required more work to remove. However, since it was so thick, the distance between C1 and C2 was farther. This allowed her to only have to remove the back of C1 to get to those "tonsils", and she was able to leave C2 intact!!!! This is a great news because this reduces the chances he'll have any cervical instability......have I said how awesome God is???

They gave us the baggie of hair they removed for the surgery, the kind you get when you take them for their first haircut. They only removed such a tiny bit of hair!! She also said that since she didn't have to go through C2, his scar will only show a little bit below his hairline. He has been so worried about that, and again, this is such an answer to Keegan's prayers.

Dr. Smith said that Keegan's syrinx was quite large, and that she was very glad that we were able to get this fixed now. She brought up the curiosity of the other NSG, who happens to be in the same hospital system, not doing a full spine MRI to check on this. When I said that he didn't think it to be necessary, she said that that is malpractice as there is no research to support that it isn't necessary. I'm working toward forgiveness on this one.....who knows how much smaller and less damage there might have been if he'd been checked for this last year when it was first found....

He will be doing physical therapy for his arms when he has recovered enough to participate. In 3 months, we will re-evaluate to see if the decompression has resolved his urinary symptoms. If it hasn't, then he will undergo further testing to see if a cause can be identified. It is possible, based on his symptoms, that he has an occult tethered cord, but we'll be hoping that the decompression alone does the trick.

Thank you all for keeping him in your thoughts/prayers!!
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Re: Surgery Update

Postby brianfsmom » Sat Jun 28, 2008 9:52 pm

Great news Lori! Keep it coming :D
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Joined: Thu Jul 26, 2007 2:31 pm

Re: Surgery Update

Postby pattip448 » Tue Jul 01, 2008 2:33 pm

Lori, That is wonderful news. Continued prayers that Keegan continues to improve!
Patti , (EDS), Mom of 16 yr old with TC and EDS 6.6mm cerebellar herniation, 15 yr old with EDS Hypermobile
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Joined: Thu May 17, 2007 9:45 am
Location: Calgary,Canada

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