10 year old son surgery questions

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

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10 year old son surgery questions

Postby josuesmom » Tue Mar 02, 2010 10:34 am

Hi,
I am new to the board. My name is Esmeralda, my son Josue (10) was recently diagnosed with Chiari :cry: and is scheduled for surgery at Barrow Neurogical Institute on March 15th. My only concern is that they are not going open the dura, it seems that most of the other places where they do the surgery that we have read about open the dura and do the graph. The NS at Barrows told us that it's because of increased risk of csf leakage that they skip this step. any thoughts on graph vs non-graph?

Also, Am trying to get an appointment at The Chiari Institute in NY, but it seems like we are just getting the run around have sent them all the documents they have requested (overnight, very expensive) and the surgical coordinator seems very standoffish and vague. has anyone here had a similar experience with them?

Any responses would be greatly appreciated.

Thanks
Esmeralda Metzler
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Re: 10 year old son surgery questions

Postby lcolangelo » Tue Mar 02, 2010 2:07 pm

i haven't heard all great things about the chiari institute-- somtimes though-- they do not open the dura-- depending on the amount of the blockage--- some neurosurgeons will play it by ear-- do an ultra-sound after removing the bone to see if enough csf is restored- where are you located??? We're from near Buffalo ny but we see Dr. Menezes in Iowa-- people come from all over the world to see him-- and EVERYONE there is wonderful!! Good luck with your son-- I hope you can get some answers!
Lisa
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Re: 10 year old son surgery questions

Postby memom » Tue Mar 02, 2010 3:06 pm

Hi

My daughter had decompression surgery at Children's National in Washington D.C. Dr. Keating was her NS. He was able to use intra-operative ultra sound to look at spinal cord fluid flow during surgery. He got good flow without opening dura. It is risky to open the dura and we were happy he did not have to go that far. Our daughter still has some issues, but NS believes it is "neurogenic" pain - damage to nervous system from CM/SM. We love Dr. Keating, he is great with our daughter and has spent a lot of time helping me learn how to cope with all this. Also, we loved Children's National Hospital, they really go the extra mile to make you feel as comfortable as possible. We drive 10.5 hours to see him and it is worth every mile! Also, Dr. Keating is willing to review cases via e-mail. Good luck and let us know how things go.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: 10 year old son surgery questions

Postby lttutrow » Tue Mar 02, 2010 8:55 pm

The only negative that I've heard about in not opening the dura is that sometimes if symptoms come back, they end up needing to go back in and do need to open up the dura.
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Re: 10 year old son surgery questions

Postby josuesmom » Wed Mar 03, 2010 12:17 pm

Thanks for the responses, will definately look into Dr. Menesez

Last night the NS at Barrows called me to let me know what they found in his CSF study; she said that the CSF flow is normal but, because of this knowledge she had to warn us that the risk for reocurrence was greater???? not sure what that means, she did not explain what the syrinx is from, I thought that it had to do with restricted CSF flow. Does he still need surgery? he has a 15mm overgrowth and a syrinx, he has many symptoms, forgetfulness, loss of feeling in the fingers on left hand, leg buckling, forgetfulness.... it just seems like we are not getting any answers. It seems like they were banking on the fact that he had restricted CSF flow and now that it turns out that he doesnt they are out of answers so they are just warning us that he might need multiple surgeries. I wish someone would be able to give us more answers...

any suggestions?

Will be calling Dr. Menesez in Iowa today see if can get a second and maybe third opinion, We live and Arizona but are willing to travel to someone with more answers and experience
josuesmom
 
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Re: 10 year old son surgery questions

Postby lcolangelo » Wed Mar 03, 2010 8:28 pm

i would defineitly get another opinion. Not sure what they meant by having a greater chance of re-currance. I have 2 children with chiari--they both have needed multiple surgeries because of re-growth (my daughter is going back to
dr. Menezes on the 19th of April for another surger)-- but this is very rare. I'm glad you're looking for other opinions from drs with experiance with chiari--there is a post pretty recently about experts that people on this site have dealt with. Good luck--I hope you can get in with Dr. menezes--he is really good-- as is the entire hospital--he is actually the head of the medical advisory board for ASAP. Keep us posted!!!!]
LIsa
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