anyone heard of optic nerve glioma?

Kristen - posted on 06/27/2012

My 3 yr old has nf1 as myself...she has a glioma to! So far no problems and has a mri every 3 months. I'm praying she don't lose what eyesight she has left!. God bless!!

Mary - posted on 11/14/2010

My daughter is 9 years old and has an optic nerve glioma. She was sick since she was born. She had her first brain surgery when she turned one. She does not have NF. The surgery left her blind. She went through many seizures also. I know how hard everything is to go through.She went through 15 months of chemo that months later didn't work. She started another 10 weeks of chemo that didn't work. Her tumor was growing. They gave her a couple months to live. The other option was radiation. Alot of hospitals wouldn't take her because of her tumor. We live in Chicago.The hospital we belong to in Park Ridge did her radiation.Intense 6 weeks everyday. She developed hydrocephalus months later and had several shunts put in. They stopped working.Her tumor was growing again.She had her second brain surgery.We have been stable now for the past years. She has alot of endocrin problems but medicine takes care of it.We have met other kids with brain tumors but optic nerve gliomas are hard to come by. My daughter has survived many things thrown her way. It wasn't easy but she is here. The hospital and her surgeon are the best!

Debbie - posted on 10/13/2010

My son also has a Astrocytoma Brain tumor but doesn't have the Optic glioma. We are in Wisconsin. I have to say there is not a lot of helpful information out there for Glioma Tumors but I would suggest that you get ahold of the Pediatric Brain Tumor foundation and they may have the information that your seeking. You can find them on Facebook or doing a search as well. If your not finding it check on ride4kids.org and you will locate them on there. Ride4Kids is for the Pediatric Brain Tumor foundation and they help raise funds for finding a cure for Brain Tumors. They are great about helping parents and getting you information that you need. I hope this helps you. Best wishes for your son, we will be keeping him in our prayers.

Karen - posted on 10/13/2010

Optic glioma are sometimes associated with Neurofibromatosis(NF). My 2 girls have NF and they see the opthamalogist every year to check for them. With NF tumors can grow on any of the nerves. Idk much about them except for what I read online. They're usually non cancerous, slow growing, and occurs in children. They just sound plain scary. I hope that your son's was caught early and can be treated easily. (((((((hugs))))))

Tricia - posted on 10/13/2010

Kathryn has a pilomyxoid astrocytoma.

Beth - posted on 10/13/2010

yes we live in ga and we have childrens healthcare of atlanta. his eyesight seems to very good as far as we know. he has had 2 eye exams and they both came out good. we dont know at this point if its a part of the cause of his seizures. we are waiting on the neurosergon to say how soon he needs to be seen based on his medical information to get an appointment.what kind of tumor does your daughter have?

Tricia - posted on 10/12/2010

I am a parent of an 11 year old girl who at 3 was diagnosed with a different brain tumor. We live in the Chicago area and have frequented Children's Memorial in Chicago for years. I'm assuming you have a children's hospital in your area. How is his eyesight? Are they attributing his seizures to the optic glioma? I'm here if you have any other questions....we've been in this 'new normal' for eight years.

Iridescent - posted on 10/08/2010

It's scary! I have no doubt. With his age and symptom history, are they sending you to a geneticist? It might provide you with some very needed answers. His diagnosis simply means a tumor on the optic nerve, not whether it's cancerous or benign (neither is excellent to have in the brain, where other areas of the body that means a lot for comfort), or how fast it's growing. They need to decide how this would best be treated first, and from there, the cause so you'd have some idea of whether it's going to come back in various other areas or not. A friend of mine on facebook has a son that had this, caused by Neurofibromatosis. He went through surgery and chemo. He is not a "normal" child; he has pretty severe ADHD, but it's not known if it's related. He has checkups (every 6 months or a year) and scans to check for new growths, and the rest of the family has also needed genetic screening and those that have it get full exams as well. If the cause is something else, the treatment could be entirely different.