syrinx increasing in size 22 month old

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

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Postby brianfsmom » Mon Feb 25, 2008 4:27 pm

Hi

Did he have a revision to the decompression? That does sound like a CSF leak (pseudomeningocele), my son had the same thing. His doctor didn't want to see him ASAP either, but in the end they did have to draw some of the fluid out with a tap. After this we wrapped it up with an ace bandage and thankfully it sealed on its own. His was large, the size of a baseball. It looked like someone clobbered the back of his head with a bat.

Often these will heal on their own, but just monitor him for signs of discomfort, such as increasing headaches, especially if he changes position, or fever, or, of course, redness or swelling or leakage around the incision.

Good luck! The neck stiffness will take a little time to heal. Poor baby. :(
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Postby Lipper5 » Mon Feb 25, 2008 6:23 pm

This is his first decompression. We have had his head wrapped in an ace bandage since the surgery. It is really hard to stay on at night because he moves and it comes off. I even went out and bought the adhesive one. Also tried to place a hat over the bandage. His is not sticking out of his head but you just tap it a little and you can feel all of the "gushie" fluid in there. He does seem to have more head pain in the morning. He still cant really look up yet. And when I remove the ace bandage he whines that it hurts and waits for me to wrap it again. We go again a week from tomorrow for the follow up. :(
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Postby brianfsmom » Tue Feb 26, 2008 1:19 pm

Hi

I think it's perfectly normal that he can't look up so soon. I think my son still feels a little tightness when he looks up, I remember that was the slowest tension to loosen up.

I remember the bandage falling off in the night!! :x I used to go in to check on him constantly! Our doctor had us put an abdominal gauze pad (it fit perfectly across the back of his head) and then secure that with the bandage. I didn't like the sticky one as much, I used a regular one with the clips. When it would fall off in the night, his bump would fill back up again, and then I would feel like I lost ground. I had to wrap it really tight, but he was good about it, because he (like all of us!) really wanted the thing to go away!!

Good luck with it. I remember those were trying times! Just keep a close watch.
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Postby angie7 » Tue Mar 04, 2008 9:00 pm

How did the apt go?
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby Lipper5 » Tue Mar 04, 2008 10:09 pm

The appointment was quick. Drove 1 1/2 hours got right in for 10 minutes and back on the road again. He said it all is healing nice. He said that the more he wears the ace wrap the quicker the fluid will go. But he said it will go even if he does not wear it but will take longer. Aiden seems to be walking better. But we cannot tell if that is because his neck is still stiff and he holds it very straight when he walks. The PT comes tomorrow for the first time since the surgery so we will see what she thinks. We will go back in a month to have one more follow up and the MRI that will tell us if this worked....Cross your fingers and toes because I dont want to ever do this again! Thanks for remembering and asking!!
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Postby angie7 » Wed Mar 05, 2008 8:49 am

That sounds good!! Hopefully in a few more weeks, you wont even tell that he just had surgery! Keep us posted!
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby KyliesSis » Thu Mar 06, 2008 9:42 pm

Hey there,

I hope that the MRI shows that the syrinx has decreased. Aiden sounds like a fighter, and I have faith he will get better soon. I'll say a little prayer. Good luck.

God Bless,
Ky's sis.
Proud Sister of 6 year old Kylie
SM C3-C4 and T10-T11
Tethered Cord Syndrome
Spina Bifida
Scoliosis
Kyphosis
User avatar
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Aiden again

Postby Lipper5 » Sun Mar 16, 2008 11:01 pm

Well, Aiden is off for his follow up MRI on April 8. I was just wondering if after decompression surgery it seems normal for him to say oughie alot. He will hold his head in the back or hold the front of his head. I assume it is a headache but it does not last long. He could be just moving along and then stop hold his head and say oughie. Then he continues on his merry way.....any help or input? His Surgery was Feb 20.
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Re: syrinx increase in size 22 month old..update

Postby Lipper5 » Mon Apr 21, 2008 9:12 pm

Well, Aiden went for his visit April 8 and the area of the brain that was "crowded" appears less crowded. He feels the decompression worked for that. As for the syrinx it has not gotten any bigger..thank God! And he thinks he sees a slight decrease. We go back for the 6 month post op Aug 5. We will keep you all posted that have replied. Thanks for all your prayers. :D
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Re: syrinx increasing in size 22 month old

Postby docrx » Mon Apr 28, 2008 9:53 am

wrong post sorry
Every Day is a Blessing from God!
Mom to one beautiful baby girl

Syrinx C6-C7 5mm
OTC- surgery Sept 16
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Re: syrinx increasing in size 22 month old

Postby brianfsmom » Tue Apr 29, 2008 7:41 am

Hi Lipper5

Glad to hear that the area is less crowded. Sometimes it can take some time for a syrinx to shrink. Up to a year or longer. At our last MRI in August, so 2 1/2 years post op, there were still areas of the syrinx showing slight shrinkage - it's not much, his shrun the most inthe first six weeks, and then has just tweaked itself a bit here and there. Good luck!
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