Posted By Chris on July 14, 1997 at 07:55:07:
In Reply to: Pediatric Oligodendroglima patient posted by Debbie on July 14, 1997 at 04:20:40:
: Our daughter is 7 years old, she was diagnosed with a grade 2/3 oligodendroglioma in the left peridle, moter strip, comprehension, and speech area. She started in Sept. of 94 with seizures. She had surgery in Jan. of 95 and was perfect. There were no deficets. Aug. of 96 she started to have simple partial mini seizures. We knew it was back. Feb. of 97 she had her second surgery. There is still a very small amount left in a very delicut area. Our Kaiser insurance wants us to do Radiation and Chemo. She didn't fair as well after this last sugery, we are afaid of more brain damage with the Radiation. I have been told that the Gamma knife has the same amount of radiation given in one treatment compared to 6 weeks of radiation. I also heared their isn't the brain damage compared to standard radiation. She will have an MRI in 2 weeks and I was told she might be a canidate of the Gamma knife. Can Chemo be given after a gamma knife treatment? Dr.Friedman of Duke would like to do a chemo treatment, a protacol they have been working on. Are there any children in the United States with this tumor and are there other children being treated now and who are they? .I am having a hard time finding doctors who have and are now treating pediatric patients with this tumor. Please contact me at ***@****. Debbie
You may want to call Dr. Benjamin Carson at John's Hopkins Hospital in Baltimore.
I'm not at all doubting your doctors abilities but as far as doing unusual
and difficult cases, Dr. Carson is World renound for it. He's also the
Neurosurgeon that was well known for separating the German Siamese Binder twins
that were joined at the back of the head and also the first to bring back
the lobectomy for severe seizers in children and making it work where others
have failed. These children walked away with only a limp and seizure free.
You may only want to call to find out what they have done for these children
with the same diagnosis your daughter has.
Either way, I hope all turns out well for your daughter. You seem like a really
stronge family and will make the best decisions for your daughter.