Post by smarcella on Oct 8, 2009 19:49:00 GMT -6
Hello everyone... I'm Jenna's mom - sorry I haven't been on in such a long time. She is doing well - 3.5 years in remission! I just have some questions about the sympathetic nerve and wanted to see if anyone else out there has had any problems with this as a result of their surgery? Jenna's was affected and it supposedly was the cause of her left eye ptosis/Horner Syndrome but more recently (over the past year now) she has had problems regulating her core temperature - her actual temp is fine but her torso is "on-fire" to the touch, she is always burning up and going to the school nurse complaining about how hot she is, her face is flushed, and ears are hot red. From touching her you'd think she has a 102+ fever, but is always normal around 98 degrees.
As we go for her next scoliosis check soon and were told in the past that she will prob be a candidate for the turtle brace, I can only imagine how hot she will be then - it will be unbearable for her. Her neurologist (Dr. Packer) said there is nothing that can be done about it.
Anyone out there have a similar problem??? Any solution or ideas? Thanks... Shelly Marcella
Jenna - Diagnosed at Age 18 months with Intramedullary Fibrillary Astrocytoma C3-T2; Debulking surgery Mar 2004; 1 yr chemo carboplatin/vincristine/temodar ending in May 2005 ; 6 wks proton beam radiation ending in July 2005. Left-hand hemiplegia; scoliosis; Tumor free since June 2006!
As we go for her next scoliosis check soon and were told in the past that she will prob be a candidate for the turtle brace, I can only imagine how hot she will be then - it will be unbearable for her. Her neurologist (Dr. Packer) said there is nothing that can be done about it.
Anyone out there have a similar problem??? Any solution or ideas? Thanks... Shelly Marcella
Jenna - Diagnosed at Age 18 months with Intramedullary Fibrillary Astrocytoma C3-T2; Debulking surgery Mar 2004; 1 yr chemo carboplatin/vincristine/temodar ending in May 2005 ; 6 wks proton beam radiation ending in July 2005. Left-hand hemiplegia; scoliosis; Tumor free since June 2006!
