Help in Texas

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

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Help in Texas

Postby patty58 » Tue Mar 11, 2008 1:10 pm

I am new to this forum. My 10 year old granddaughter was diagnosed with syringomyelia at age 3. I am not satisfied with the neurologist she is seeing and wondered if any one could recomment someone in the Dallas/Ft. Worth area. She just had an MRI and now also has a bulging disc. Any help would be greatly appreciated.
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welcome

Postby Sara » Tue Mar 11, 2008 4:47 pm

I just wanted to say hello and welcome. Hopefully someone will post some names from Texas. But generally you can usually get pretty good results from a large children's hospital. Dr. Timothy George is at Austin TX http://www.dellchildrens.net/services_a ... tral_texas

Send for a free info packet if you haven't already. Also, check out the tapes and DVD's -they are very informative.
Sara
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thanks

Postby patty58 » Tue Mar 11, 2008 4:49 pm

Thanks, She is being seen by a dr. at Cooks Children's in Ft. Worth but I'm not really please with how much/little he knows about SM.
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tx

Postby Sara » Tue Mar 11, 2008 4:57 pm

Dr George is a pretty well known doctor and researcher in this field. I think you will find him very helpful.
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From Texas also

Postby jonesjam » Tue Mar 11, 2008 8:50 pm

We are seeing Dr. Honeycutt at Cook Children's tomorrow. I can let you know what we think after that appointment. He was highly recommended by some of the parents on this forum. Hang in there. This is our 5th neurosurgeon. It can be a long frustrating process. I thought I was alone until I read all the stories on this website. I think you just can't be afraid to keep looking until you find the doctor and team you are comfortable with.
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thanks

Postby patty58 » Tue Mar 11, 2008 10:12 pm

Thank you so much. I would appreciate any info you can give us. I am new to this forum so am just learning my way around.
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Dr. Honeycut

Postby jonesjam » Fri Mar 21, 2008 8:57 pm

Sorry to take so long to reply. We saw Dr. Honeycutt and a week later we were in surgery. My daughter had surgery on Wednesday. As to Dr. Honeycutt and his staff, he is awesome. I can't say enough good things about him. I don't know who you are aseeing but I strongly reccommend Dr. Honeycut. My daughter felt very compfrtable with him and his staff from the beginning. In addition, he has the best technology available at his dispoal at Cook Children's. I don't think you can find better.
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Postby patty58 » Sun Mar 23, 2008 1:53 pm

I'm glad the surgery went well. We are going to Dr. Donohue tomorrow. I understand he and Dr. Honeycut are in the same group.
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Re: Help in Texas

Postby JustinE » Tue Apr 29, 2008 5:13 am

Is san Antonio too far for you? My family Dr sent me to a neurosurgeon who in turn (maybe a second opinion?) send me to a pediatric neurologist who diagnosed me within days.....This was way back in 1971 when I was 11 yrs old. (you do the math). I am unable to recall his name as I am sleepy, but will call my mother later on as she will remember. I ended up with a team of Drs on my surgical team, but Dr Alan (Fred) Kingman was my main Dr. I grew up and never wanted to see any of them again....but had to have a little more contact when I developed scoliosis from the ACM and SM. I had a Harrington rod fused to my spine and "grew" 3 inches in a matter of hours and I even got my ears pierced too! Anyway, about 8 years ago, I started having more trouble and my PCP sent me to the orthopedic to be sure the rod was still stable....it was, so the Ortho Dr sent my to a neurosurgeon for the SM/ACM. Dr Kingman had passed away but his son grew up and became a nsg just like his dad. At that point in time, it seemed more of a "watch and wait". Now after a few more years, I recently had an MRI and will see Dr Tom Kingman on May 8th. I felt very blessed to have had these Drs in my life. I only recently found out that Dr Kingman's group were known as "the Hot Shot Neurosurgeons of San Antonio and So Texas". I really wanted to return to this pediatric NS, but he does not see patients older than 17 or so and because I was "an old lady" I went to another wonderful Dr in my hometown of New Braunfels. I hope this helps and sure didn't mean to ramble on & on in my very first post! Or maybe I need to get some sleep.....

I do hope things work out for you. It is different learning how to handle it as a young child and then find out all sorts of new things as an adult. That was a different time----No one explained things to me or my parents, so I learned alot when I turned 40 and learned my way around the internet!
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Re: Dr. Honeycut

Postby willsmom » Tue Apr 29, 2008 3:04 pm

jonesjam wrote:Sorry to take so long to reply. We saw Dr. Honeycutt and a week later we were in surgery. My daughter had surgery on Wednesday. As to Dr. Honeycutt and his staff, he is awesome. I can't say enough good things about him. I don't know who you are aseeing but I strongly reccommend Dr. Honeycut. My daughter felt very compfrtable with him and his staff from the beginning. In addition, he has the best technology available at his dispoal at Cook Children's. I don't think you can find better.


Hi Jonesjam, I just now saw your post re: Dr. Honeycutt. He is my son's NSG and we absolutely love him, his staff, the hospital, etc. Dr. Honeycutt did my son's decompression (bone only) last fall. Unfortunately the CSF flow did not normalize like we had hoped so he is doing duraplasty this Friday.

Did he say a prayer with you guys before you daughter's surgery? He placed his hand on my son's head and said the most awesome prayer. It was a moment I will never forget.

Let me know how your daughter is doing.
Yvette
This too shall pass.
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Re: Help in Texas

Postby jonesjam » Sun May 04, 2008 9:11 pm

Yvette -

Sorry. We have not logged on in a few days and we just now read your post. I am so sorry you have to go back in. We are hoping to avoid that. However, it seems Dr. Honeycutt's numbers for just bony decompression are dwindling. I hope your son is recovering quickly. I will be interested in knowing how round 2 goes for you. Why did they decide to go back in?

We love Dr. Honeycutt and his staff. David is great. And yes, he did pray with us. Just lilke you said. He asked if he could and then put his hand on Sam's head. As a mom, it is much easier to let go of them if you know a man of God is doing the surgery. It was peaceful.

Let me know how you are doing. I will be waiting....
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Re: Help in Texas

Postby willsmom » Tue May 06, 2008 9:40 am

Hey Jonesjam

I sent you a PM. Thanks for your concern.
Yvette
This too shall pass.
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Re: Help in Texas

Postby willsmom » Mon May 19, 2008 3:18 pm

Hey Jamie,

I sent you a PM in response to the latest news on Sam. Did you get it?

I'm worried about you so touch base when you can.

Take care.
Yvette
This too shall pass.
willsmom
 
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Re: Help in Texas

Postby jonesjam » Mon May 19, 2008 9:25 pm

I have tried to send you several PM's back and they won't leave my out box. I can't figure it out. I did send you an e-mail last week. Did you not get it? Here is my e-mail address: jonesjam@lampasas.k12.tx.us. How is Will?
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Re: Help in Texas

Postby willsmom » Tue May 20, 2008 10:37 am

Hi Jamie,

I sent you an email. Let me know if you got it.

Yvette
Yvette
This too shall pass.
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Location: Dallas, Texas


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