Surgery for my dd - Advise???

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Surgery for my dd - Advise???

Postby JenandLuli » Mon Sep 21, 2009 3:21 pm

Hey All!
Well, after all the uro tests and another MRI the Dr at Childrens is recommending surgery for my 3 year old dd. The uro tests showed that she has a large capacity bladder (dr said it's been stretched from her holding it) and that she has loss of sensation to go when full. But she does still have the function to go.
MRI showed no change since her last MRI - She still has 2 syrinx with no known cause. 1st is C3-T1 and 5mm dia. 2nd is T6-Conus and 7mm dia. and the center of spinal cord is minimally dialated through out.

The NS wants to drain the lower syrinx in the hopes of stopping the progression of bladder dysfunction, pain and tingling feet. He will not put in a shunt.

Of course, I am nervous and hope that now is the right time. The dr says the benefits out weigh risks, etc.

Any words of advice???
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Surgery for my dd - Advise???

Postby Sara » Wed Sep 23, 2009 6:58 am

did you get a second opinion? When in doubt, I think a second opinion is always in order. Especially with idiopathic sm. someone else might pick up a cause that was missed by the first doctor.
Sara
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Re: Surgery for my dd - Advise???

Postby JenandLuli » Wed Sep 23, 2009 11:07 am

This dr is actually our 3rd opinion. Dd's 1st 2 drs said that the syrinx would resolve. We went outside our HMO to get this opinion when the syrinx grew and she was having more pain, tingling and bladder issues. our dd's reg NS agrees with the childrens dr recomendation and has transfered care outside our ins to him.
We have kaiser and it's really difficult to get anything done.
I am hoping to hear from people and parents who have had surgey so I would know more about what to expect, etc. first hand.
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Posts: 100
Joined: Thu Sep 06, 2007 10:58 pm

Re: Surgery for my dd - Advise???

Postby Janice » Wed Sep 23, 2009 3:51 pm

Hi Jen,

Unfortunately, the problem seems to be that the procedure this NS is recommending is something new. No one seems to have heard of this device that will be used to hold the syrinx open. I can only suggest that you write to a few of the main CM/SM experts for advice on this particular device/procedure. To date, the only surgeries spoken of by experts, referenced in studies and articles, is laminectomy with, or without, shunting.

With this being an unheard of, and new, device you'll need to go with your heart and pray for the very best outcome for Luli. I wish there was more information to provide, or offer, you but this device is totally new.

Have you searched under the device that will be used? Maybe check w/the manufacturer to see what type of problems (If any) have been reported. I would think that the manufacturer could also let you know if this device is recommended for use w/syringes.

Take care and keep us posted. You're all in my thoughts and prayers. (((((Hugs)))))
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Surgery for my dd - Advise???

Postby JenandLuli » Wed Sep 23, 2009 5:11 pm

Thanks so much Janice! I will email other NS's and see if i can get a response. I will also research more about the gelfilm.
All great advice! THANKS!!
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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JenandLuli
 
Posts: 100
Joined: Thu Sep 06, 2007 10:58 pm

Re: Surgery for my dd - Advise???

Postby JenandLuli » Sat Sep 26, 2009 1:10 am

Well, I've done some more research. I found out about gelfilm here:
http://www.pfizer.com/files/products/uspi_gelfilm.pdf
Looks like it is for neurosurgery.

I then googled it with myelotomy. I found articles that had an abstract in the google preview but it cost $ to read the whole thing. This is what I found:

Unexpected Myxopapillary Ependymoma within a Filum Terminale ...
Jul 9, 2007 ... A myelotomy was made at approximately the S1 level, then a small piece of GelfilmĀ® was bent into a U-shape and inserted so that its inherent ...

http://content.karger.com/ProdukteDB/pr ... tNr=224273

In the same pediatric neurosurgery journal there is an article that Menezes discusses "gelfilm" ... but again, I can't read it without a subscription.

Anyway - I am posting this as a follow-up. Maybe someone eles will want this info or has more to share.
:-)
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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JenandLuli
 
Posts: 100
Joined: Thu Sep 06, 2007 10:58 pm

Re: Surgery for my dd - Advise???

Postby Janice » Sat Sep 26, 2009 11:34 am

Interesting Jen. I think you should contact Dr. Menezes. I'm sure he'd be willing to discuss this w/you since you're considering it for your daughter. He probably has a website w/an email address so you could get a fairly quick response.

Take care and great research!!
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Joined: Wed May 30, 2007 6:44 pm
Location: Escondido, California


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