Anyone with Tectal Glioma?

[MyEmma23]

I'm looking to meet others with (or have loved ones with) a tectal glioma.  My daughter,3, has this type of tumor.  As patients tend to be on the "watch and wait" with regular MRI's, I am interested to know what amount of tumor growth is acceptable until it becomes something that requires treatment.  I have learned from talking with a few others with this tumor that doctor recommendations can vary from one to the next regarding treatment so I am very interested to hear how others are doing.
~Amy

[LoriOh]

Hi.  I found this link & on it "JC2010" posted that she was diagnosed with brain stem glioma when she was 3, back in 1991.   I am actively searching for answers to both of our questions.     http://csn.cancer.org/node/153801  

[elizabethiswell]

Hello--
I just found these posts, and was surprised to see two posts about the condition I've had! I am 23. Two years ago I went to see a neurologist about an almost constant month-long headache. I had hydrocephalus due to a brain tumor in my third ventricle. I, too, had an endoscopic third ventriculostomy and shunt placement. A biopsy confirmed that the tumor was a tectal glioma. I am happy and well now!

But it's important that the tumor does not grow, so I am open to ideas about how to shrink it. I have explored nutrition/vitamin approaches, acupuncture, qigong and craniosacral therapy.

One question I have is whether this tumor could be related to hormones. Blood tests say my hormone levels are "normal" (which is a big range), but I have hirsutism that started around the same time as my symptoms. I am wondering if an elevated level of testosterone in women could be a factor....I would appreciate any insights!

All my support and best to you all,
Elizabeth

[MzC]

  My son was 12 years old when he the Dr.diagnosed his Tectal Gilomas it was April 07.He started urinating on his self ,scared of heights,and attetion span was short.I notice  that his sleeping pattern was changing bedtime was around 8p.m. every nite and was up at 5a.m with the birds. Durining the day he was tired took nap through the day. It was rough the first two years with school after finding out.The Dr. did a 3rd ventriculostomy incision no shuntthe next day after diagnosed.During that first week he did good but, the day he was being discharge he fell out on the elevator so they re-admit him for rehab.                                        Now he's 16 and they belive its changing they can't test it so we just waiting on side-affects to go further in doing treatment.Treatment is chemo an/or radiation.His strenght is good right now so they don't want to break it down.

[armon271]

My son was diagnosed with Tectal Gliomas when he was 6 years old. Due to location of his blockage, they did a third ventriclostomy instead of shunt and were able to do biposy to confirm the type of tumor that he has.  For the last 10 year, we monitored his tumor by having mulitple MRI done. His tumor stayed the same for the first 7 years.However, our last MRI, dated 7.21.11 has shown an increase in his tumor size. Needless to say, we are very worried and are supposed to see an oncologist within next two weeks to get more familiarized with our options. Eventhough we were told that this tumor is benign and slow growing, now doctors are telling us that it could grow and cause problems later. We are supposed to have another MRI in 3 months to monitor this tumor. The biggest change has been within the last 3 years. Physically, my son is the same. He's an "A" student and we don't see any changes in his behavior. However, I am very anxious to know that if he needs radiation and/or chemotherapy, what is the chance of this tumor continue growing? Also, is radiation/chemotherapy for rest of his life or just enough to reduce his tumor size for now?

[Keaki13]

I am 23 and was diagnosed with a tecal glioma when i was 9yrs old. After a baseball accident i started haveing head aches and vision problems. They dont know if i was born with it or a result of the head injury. I went in for my first MRI and thats when the diagnosed me with the tecal glioma and hydrocephalus. It was watch with MRI over the next 9 year. My senior year of highschool, i started having worse head and bad nausea and vomitting. Jan 07 i had my shunt placed to address the hydrocephalus. I have sleep problems for as long as i can remember and croninc pain since my junior year of highschool. and numeruss other medical issues. i just recentally had my annual MRI and it came back that my tumor has grown, i have seen a nerosurgyn who felt surgy is to risky due to the tumors location, so he is send me to a radiation onclogist to go over the options of radition and chemo theropy.

[GidgetLynn]

My was diagnosed at age 4 with a Tectal Glioma.. His symptoms were, bed wetting, headaches, passing out . I had spoken to his pedi on numerous occassions about all of these symptons and was told to stop giving him drinks after supper, make sure he takes a nap during the day blah blah blah. We almost lost him to hydrosephalus. He had a shunt put in immediately.The Neuro Surgeon had told us that theres a 50/50 chance his tumor would never grow and only time would tell. The first year he had 4 Mri's a year. and as he got older they have lessoned and now only once a year. He has had to have his shunt replaced once. Over the years his tumor HAS grown. He is 13 yearsold now and the tumor has grown 5ml's since he was 4. The Neuro thinks it's getting close to taking evassive action. We see his Oncologist this coming Friday to see what she thinks. How long do we wait to do something when we know it's growing? Do we have to almost lose him a second time?? Anyone have any advice on how long is too long to do something?