View Full Version : growing rods

Benji's mom
05-26-2004, 10:42 PM
My four-almost-five year old had growing rods put in March 23. Three weeks ago, they were lengthened. One week from Friday, he is scheduled to have them lengthened again. I am cocncerned that he is not ready for this next surgery as he hasn't bounced back from the last one yet. Also, doesn't the spine need to adjust to the last lenthening before adjussting the rods again? He is in the same body cast he was put in a week before the first surgery. Any feedback would be appreciated. What are any suggestions for helping with the itching?

05-27-2004, 01:10 PM

Wow, the lengthenings are being done very close together - did they tell you WHY they are lengthening so often? Is this still part of the initial implant phase? Maybe to get the rods in a correct position? I've never heard of that. I'm very curious to know why they are lengthening so often. Please let us know what the doc says about the frequent lengthenings.

If he's had rod placement, why does he need the cast still? I understand that they probably fused the rods at the top and the bottom of the spine (attachment sites) but does he really need a cast still? Many kids who have had growing rods placed are not even in braces, let alone casts. Maybe Benji has unique problems that require a cast? Does he have neuromuscular problems? Is his curve still severe (more than say 80 degrees)?

Hmm... The itching is a big problem because you can't STICK anything inside the cast to make it better. No powder to keep it dry, no objects to scratch with. Good luck! I'd also be asking the doc about the itching.

Braydon has two adjustable rods, but they are not the traditional growing rods. His are located on his back, keeping the chest expanded and another keeping his spine stable. He has lengthening every 6 months. Surgery any sooner would aggrivate the skin healing, I would think. Please let me know what the doc says about the frequent lengthenings. I hope there is a valid explanation. Good luck!

Benji's mom
05-29-2004, 08:38 PM
Carmell, The reason Benji's still in a cast is for protection most ofall.He's a very active and healthy five year old otherwise. His curvature was at 90 degrees before a casting done one week before the implant surgery. I don't know what it is now. I guess I likewise am not sure why the lengthening surgeries are so close together. We were told at the beginning that they would be four months apart. I guess that's why I'm looking into this - to see if this is typical or at best, not out of the ordinary. I don't seem to be getting real clear answers - probably my fault - I'm so weary with everything that I'm not always clear and my mind gets foggy. They do plan to put him in a TLSO brace 6 weeks after the next surgery. Thanks for getting back with me. Benj's Mom

L's Mother
12-19-2006, 04:10 AM
Hello! My son is 21 months old and he has a severe congenital kyphoscoliosis. The kyphotic curve is 50 degrees or more. The scoliotic curve is about 26 degrees. We live in Miami, FL. We have seen five specialists in the area and the opinions are very different.
Three doctors want to wait until the child shows some light neurological deficit. (Right now he is performing at his age level). They state that any deficit can be reversible if it is treated right away. They also keep insisting that they can correct the curve at the moment the spinal cord is freed/decompressed. The reason to wait is to allow the vertebrae get bigger and harder and, at the same time, gain time to allow the torso get a littler bit larger and longer. The problem with this approach is that, when these doctors consider it is time, they would to fuse 6 vertebrae, which would cause the child to have a torso up to 3 inches shorter than a normal person. I think this would be very noticeable since the 3 inches would not be lost proportionally, only from the torso. The other problem is that the cervical and lumbar sections of the spine are getting all curved in the meantime.
The other two doctors agreed that the child needs surgery now. We had a surgery scheduled for September 25, 2006 but luckily it was cancelled. The orthopedic surgeon who was going to perform the surgery had told us he would remove a disc in order to decompress, straighten, and then fuse four vertebrae. He did not want a Neurosurgeon in the room, though :confused: . Anyway, four days before the surgery, he changed his mind and said that he would not remove any disc or vertebra. Instead he was going to fuse as it was and just stop the curve from getting worse. The second surgeon would not perform the surgery without a neurosurgeon and the hospital he belongs to is purely orthopedic.
We traveled to Cincinnati a week ago and met Dr. Durrani. He offered to decompress the spinal cord and later correct over time using growth rods. So far, this kind of rods has been used to correct scoliosis (at least, this is what I have been told). Is anyone out there who knows of a small child who has been dealing with kyphosis and extendable rods? Has anyone heard about Dr. Durrani at the Cincinnati Childrenís Hospital?
Please, contact me at congenitalkyphosis@yahoo.com if you want to speak more freely and/or want more information about my sonís case. I created this website for this matter. Thank you beforehand for your answers.
Lís mother.