Oh Please help us find an expert!!!

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

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Oh Please help us find an expert!!!

Postby BeThereMom » Tue Nov 10, 2009 9:05 pm

My 10 year old daughter was diagnosed with a fairly large syrinx in her mid back a month ago. The neurosurgeon is sending us to Duke to get a second opinion on surgery to drain it. We live in Asheville, NC. No one can tell me how we can find an expert on syringomyelia to take her to. She's in terrible pain and reduced to using a wheelchair now. I am a go-getter and am frustrated with no answers from doctors and nothing from searching the internet. She also has other symptoms that aren't "connected" to her diagnosis per doctor's opinion, such as her entire head hurting, chest tightness, upset stomach. Thank you in advance for any advice!
Cindy
Mom of 11yr. old daughter, Elaina
idiopathic syringomyelia, large syrinx at t5-t7
permanent shunt since 12-22-09
My girl is one tough cookie, people believe her smile through the pain.
BeThereMom
 
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Location: Asheville, NC

Re: Oh Please help us find an expert!!!

Postby mlb67 » Tue Nov 10, 2009 9:19 pm

my daughter is 10 with Chiari 1 malformation. Dr. George is incredible in Austin Tx.........
Monica~
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Re: Oh Please help us find an expert!!!

Postby SamuelsMom » Tue Nov 10, 2009 10:03 pm

You are in the right place to get answers and support. Dr. Frim in Chicago is considered an expert. Others will chime in with NS that are closer. The question I would have (maybe you know the answer) but what is the cause of her sm. I would try to figure that out first.
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Re: Oh Please help us find an expert!!!

Postby Janice » Wed Nov 11, 2009 12:02 am

Dr. Fuchs is the expert at Duke. Hopefully her appt is w/him or her. Before considering surgery of any kind, the cause for the syrinx should be found. Shunting is an extremely risky surgery. If there's an underlying condition, such as Chiari Malformation, decompression might be required which could very well collaspe the syrinx. If this were the case, shunting would be unneccesary. Decompression is risky, however it's less risk involved than shunting. IMO, more doctors are experienced at decompression surgery than shunting.

Dr. Fuchs is an expert and therefore should know the proper testing required in order to ensure there are no underlying conditions.

I have SM and experience the headaches and chest tightness as a result of it. It is possible that her symptoms are a result of the syrinx. Perhaps Dr. Fuchs can help you w/this. The only way to know for sure is through the outcome of surgery. Whatever symptoms are relieved, or better, were most likely from the syrinx, or any other underlying condition she might have.

Take care and I wish you the best w/Dr. Fuchs!
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)
Janice
 
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Re: Oh Please help us find an expert!!!

Postby memom » Thu Nov 12, 2009 8:22 am

Hi -

We have been seeing Dr. Keating in Washington DC at Children's National. Both Dr. Keating and Children's are great. Our daughter had decompression surgery in July for her syrinx which is caused by Chiari Malformation 1.5. She had similar symptoms. I agree with the other postings, you need to determine what is causing the syrinx. It is my understanding that a shunt is a last resort. They are very risky, too many things can go wrong. For your daughter's sake get a second and perhaps a third opinion. Be prepared to travel. Good luck and our thoughts and prayers are with her & your family. Keep us posted on her progress.

Memom
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
memom
 
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Re: Oh Please help us find an expert!!!

Postby BeThereMom » Thu Nov 12, 2009 9:56 pm

Thank you memom, Janice, SamuelsMom, and mlb67. The doctors say it is not Chiari or trauma initiated SM. They say its just SM that she was born with and just now has developed symptoms.
So I don't know how they would find out the cause. Still haven't heard from NS the referral appt day with Duke. I hope I replied correctly to you guys. Blessings.
Cindy
Mom of 11yr. old daughter, Elaina
idiopathic syringomyelia, large syrinx at t5-t7
permanent shunt since 12-22-09
My girl is one tough cookie, people believe her smile through the pain.
BeThereMom
 
Posts: 17
Joined: Thu Oct 08, 2009 7:51 pm
Location: Asheville, NC

Re: Oh Please help us find an expert!!!

Postby SamuelsMom » Thu Nov 12, 2009 10:16 pm

You responded correctly!!! Keep us posted and let us know what the expert says. I think there still some ruling out of causes to do before accepting idopathic.
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Re: Oh Please help us find an expert!!!

Postby chiarimom3 » Sun Nov 15, 2009 7:30 pm

Try Greenville, SC. http://www.seneurosurgical.com. My daughter was operated by Dr. Christopher Troup. It was a success!
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