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hcdinva
02-16-2007, 12:09 PM
Hello everyone! I am so glad I found this site and wish I had found it earlier. My son was born in June 2006 (5 weeks early) but no health concerns @ birth. He was however diagonsed with Scoliosis in Oct of 2006. The curve is approx 20 degrees and we finally had the MRI yesterday which was nerve racking in itself w/him having to be put asleep. We will not know the results until Tuesday but understanding what some other parents are experiencing really helps. I was never told what they may be looking for during the MRI and I was able to get some ideas from previous posts. The orthopedic pediatric dr. we are seeing is supposed to be the best in the Richmond, VA area and I hope everyone is right! If anyone has any information or suggestions that I should take with me for our appt on Tuesday I would greatly appreciate it. My son has not been braced yet b/c he wanted to wait for the MRI results. Logan is now 8months old :)
Thanks!!
Heather in VA

Carmell
02-20-2007, 04:57 PM
I hope your appointment went well today. Did they tell you anything new? Let us know what you found out. I believe getting second and third opinions are important, especially in such little ones.

hcdinva
02-21-2007, 11:52 AM
Well the MRI went well and we went to the Dr yesterday to get the results. Unfortunately they were not good. He has a tethered cord. We have now been referred to a Pediatric Neurologist. We live in Richmond, VA and I would love to hear from others that may have had something similar happen to them. We want to find the BEST and are willing to travel anywhere in the US to find this. I want a Dr that has preformed this surgery numerous times. So far I located a Dr @ Columbia University in NYC. Thanks for all your help!

Heather in VA
Logan 6/10/06

Carmell
02-21-2007, 02:25 PM
Hi Heather,

Thanks for the update. Sorry to hear the results show a tethered cord, however, it isn't the end of the world, I promise. Of all the surgeries Braydon has had, his tethered cord release was one of the smoothest recoveries. Did they say what is causing the tether? Does he have a fatty filum or lipoma or syrinx or what? Depending on what's causing it, you will know a little more about how it will be repaired/released. My Braydon had a fatty filum tether. This is the simplest, most straightforward procedure the neurosurgeons do.

I hope you will be seeing a neuroSURGEON, not a neurologist - big difference between the two.

There is a good yahoo list for parents (and some adult patients) of family members who have tethered cords. You can check out the link and see if you are interested... http://health.groups.yahoo.com/group/LMC-TCS/

You mentioned something about seeing the best surgeon for this procedure. There are quite a few excellent surgeons that I've heard of. However, none of them have been from Columbia University. Not saying they don't know what they are doing, just that that's not "the place" for tethered cord release surgery. There is a list of neurosurgeons that many families have recommended on another list I'm on. I'll be happy to get that for you, if you are interested. Braydon's neurosurgeon is Dr. Jack Walker in Salt Lake City (yes, we live out west). He has patients come from around the country to see him. They know their stuff here.

Take a deep breath. You are doing great. Let me know if you have any other questions that I may be able to help with.

Carmell
02-21-2007, 03:15 PM
Hi again,

Here is that "parent recommended" list of neurologists/neurosurgeons I was talking about... It is by no means an inclusive list. This is a list formed by parents who have children with multiple medical issues. These are the docs who have been recommended.

NEUROLOGY/NEUROSURGEONS

Alabama
Dr. Jerry Oakes - Birmingham (Children's Hospital of Alabama)

California
Dr. Peter Sun - Oakland (Children's Oakland)

Florida
Dr. John Ragheb - Miami, (Miami Children's Hospital)

Illinois
Dr. David Frim, Chicago (University of Chicago)

Dr. McLone, Chicago (Children's Memorial Hospital) (semi retired)

Kentucky
Dr. Thomas M. Moriarty, Louisville (Kosair's)

Minnesota
Dr. Mahmoud Nagib - Pediatric Surgical Associates, Minneapolis

North Carolina
Dr Herbert Fuchs - NC- (Duke Children's Hospital)

New York
Dr. Souidane NYC

Pennsylvania
Dr. Leslie Sutton - Philadelphia (CHOP)

Oregon
Dr. Nathan Selden - OHSU/Doernbechers Children's Hospital - Portland

Texas
Dr. David Donahue - Cook Children's Medical Center, Fort Worth

Dr. Dauser - Texas Children's Hospital, Houston

Utah
Dr. Marion (Jack) Walker, SLC, UT (Primary Children's)

Washington
Dr. Anthony Avellino - Seattle Children's Hospital

hcdinva
02-26-2007, 11:50 AM
Thanks so much for all the info and the list of Dr. We dont know what is causing it...The Orthopedic Dr said something a/b fatty tissue but nothing is apparent on the outside. I have also recently learned that Sweaty Feet are a sign of a tethered cord. Have you heard of this. Logan's normal Dr said it was nothing to worry a/b when I brought it up @ his 2mo appt but his little feet are always clamy and sweaty.
Thanks!!!
Heather