Had Surgery - No Relief - Need Opinions!!

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

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Had Surgery - No Relief - Need Opinions!!

Postby amp442 » Fri Apr 11, 2008 3:35 pm

Our daughter was diagnosed in October 2007 with the Chiari Type I Malformation with a syrinx. We thought things were going well - we finally had a diagnosis after 4 years, several doctors and a lot of lost sleep (for everyone). Some of her symptoms are very classic for a Chiari Type I Malformation - however the neurosurgeon told us that he may not be able to help all the pain and numbness. Anyway our daughter has had pain since she was 2 and able to communicate - she has alot of problems including club foot and one foot was deformed, a heart murmur, problems with her eyes and a very weak immune system. We had the decompression surgery on November 9, 2007 and after a 10 day stay in the children's hospital and an infection in her incision we were hoping things were on the rebound. Our 6 - 8 weeks recovery time has come and gone and she is still having problems like she had before. We came home very frustrated today after seeing a new neurologist that had no answers for us - we just have to wait on the MRI to see if the spinal fluid flows correctly and if the syrnix is reducing. Our daughter cannot attend school on a regular schedule, she cannot play sports or play at the playground, she is always very fatigued, has numbness in her legs and does this strange twitching thing with her arms and hands. We have days when she doesn't want to do anything, but on certain days she lies to us about how she feels to be able to play or go to school and then is in pain or extremely fatigued. She catches every bug or cold that comes around and usually ends up with an infection. We feel as if we cannot get any answers and to what is the next step if the syrnix is reducing or if it is not. Just wondering if anyone had a similar situation. We are even considering looking for a doctor that specializes in this type of problem. We are located in central North Carolina, but are willing to go anywhere to get the help our daughter needs.
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no relief

Postby Sara » Fri Apr 11, 2008 4:18 pm

I am so sorry to hear about your daughter and her situation. My own daughter is 13 and has had 15 brain and spinal surgeries and lives with daily pain. I know where you are coming from.

I have one suggestion- many times patients will develop raised intracranial hypertension after surgery. This can sometimes be diagnosed by having a dilated eye exam to look into eyes to determine if the optic nerves are dilated. If they are, this means there is an increase in CSF pressure. However, some people don't show this classic sign, and then diagnosis gets difficult. A spinal tap or direct CSF measure of pressure in a hospital setting is the only way to find out for sure if the pressure is high. I would ask your nsg about it, as a subset of patients with Chiari/SM will develop this complication and a post op infection may increase the risk.

This will be discussed at our annual conference in July (if you can come at all, I highly recommend it- best place to get info and hear a large number of the best doctors all in one place)
Here is an article that might help: http://www.ncbi.nlm.nih.gov/pubmed/1269 ... t=Abstract

Sara
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Postby PittyPatty » Sun Apr 13, 2008 4:17 pm

Very sorry to hear what you are going through with your daughter. I don't normally post in pediatrics (I'm the one with sm and tcs), but something in you post raised a question - the mention of club foot. This is often associated with TCS (tethered cord syndrome). Has this been ruled out for your daughter? If not, it could be causing some of her symptoms.

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Re: Had Surgery - No Relief - Need Opinions!!

Postby youngwife » Mon Apr 21, 2008 4:06 am

Hello!
I am very sorry that your daughter is having such struggles at such a very tender age. I wanted to pass on information about the Chiari expert that we saw in North Carolina. He is wonderful, and would help you; EXCEPT for the fact that the hospital he practices at no longer allows surgery on pediatric patients because they are not equipped with a ICU for peds. :(

So, he may be someone you would want to contact anyway for consult and advice. His name is Dr. Michael Rosner, and he is in the Hendersonville area. Go to www.mjrosner.com for more details on his contact info. Also, if you ask a question from here, he will respond to you personally.

HTH!
Rebecca
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Re: Had Surgery - No Relief - Need Opinions!!

Postby willsmom » Sun Apr 27, 2008 11:27 am

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Last edited by willsmom on Sun Apr 27, 2008 12:43 pm, edited 1 time in total.
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Re: Had Surgery - No Relief - Need Opinions!!

Postby angie7 » Sun Apr 27, 2008 12:30 pm

2 of the best ped doctors regarding CM/SM is Dr Frim in Chicago and Dr Menezes in Iowa. Both are renowned for their expertise in these conditions and if either of my daughters' had CM/SM, these 2 would be the only ones I would go to. Specialists in CM/SM are very important when dealing with these conditions. Each person is different and it isnt a "one size fits all". They are up to date on the latest research regarding CM/SM. Also not many NSG have even heard of CM/SM nor treated many patients, even at big hospitals or big cities. Experience is something that both of these doctors have. I would contant one, if not both of them. Here is there info

* Dr. David Frim
University of Chicago Children's Hospital
Pediatric Neurosurgery
5841 S. Maryland Avenue
Chicago, IL 60637
Office Phone: (773) 702-2475
Office Fax: (773) 702-5234



* Dr. Arnold Menezes
Neurosurgeon
University of Iowa
Hospitals and Clinics
Iowa City, Iowa 52242
Phone 319-356-1616
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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