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

[tyanna42]

my son is fixing to be 3 and he has tectal glioma but his tumor is on his brain stem they also said they cant touch it but he is doing great i had a good doctor who worked on him and my son just start learning how to walk but he needs help on his speech im from corpus christi TX the dr who worked on him his name is dr burke i recomend him hes a great dr..even if your not from the tx area i would look into it and find someone who knows what there doing...its been a hard couple of years but we are doing ok just greatful the tumor isnt cancerous

[jimenaynachito]

hi!! my name is jimena. and firts of all.. my spnglish is not that good! sorry for that but i am able to read and understand perfectly. well i saw  your comment and  Q´s looking for answers for your litlle one, and well i am one of those  persons that are running with you, i have a 4 yr old son who has been diagnosed with tectal a ( a very big one and in the very worst place) and hydroce.. the doctors say  that the tumor can´t be touched, it is too risky and it is not doing enough pressure to make the third ventricolomy..(sorry i don´t know how to write it).. he got  like 4 MRI´s done since september.. and they say that we just have to watch if he present symptoms, let me tell you that this tumor has been discovered acccidentally... however, i asked the doctor a thousands times if the life of my son was at risk, and they say¨No¨.. with a shunt will be fine,... the tecnology  y taking big steps, ans as you, my life has changed, i can´t laugh like before thinking in my child, but i am putting everything in God´s hands and of course i trust in the doctors... i would like to know  if you found out something else that could helps us both to  live with this better or at least if something gives you hope, for now i just  can tell you that the doctor at children´s hospital told me that theres nothing to worried about we gonna keep our babies with us ... please  write me back. or anybody else to see if i am right or not.

[az74]

I was diagnosed with my tectal glioma in April of 2007.  Believe me a day I will never forget.  My symptoms included numbness, weakness in my left limbs and hands, left eye vision issues, severe headaches and my body felt like it was carrying around an extra 100 pounds!  We went to the DR and they did and MRI and it was determined I had a tectal glioma.  We were given the same answers of - "Slow growing, inoperable, not treatable, need to watch, can't touch due to location and the chance of causing blindness, etc..."

I have been pretty stable up until about 6 months ago and my symptoms started to increased.  My depth perception is completely off, I get dizzy very easily, I wake up in the morning with severe headaches that also cause bloody noses, the weakness,numbness and tingling in the limbs is worse.  We went back to the neurologist and he had us follow up with our neurosurgeon.  I must say we are at one of the best hospitals, Barrow's, but getting frustrated at the lack of answers.  They do believe the symptoms are a result of the tumor and just yesterday they did an MR Spect do graph the tumor and see if they could get a better make up of the tumor and see maybe how it might best respond to treatment.  We are anxious to see what the results of this might be.  

It has been a long 5 years and I have learned to just cope and know this is life and put on the "happy" face but I am not sure how much longer I can deal with the symptoms like this.  

I am a mother to 2 kids who have been in the dark about this for 5 years and I am not sure how much longer we can go without letting them in on what is going on.

On another note, just this morning I was given the name of a doctor at Stanford University who might be up on this type of tumor.  If I get any information I will let you know.

[jesica7881]

i am 31 yrs old and i was just diagnosed with a tectal glioma. i have been having headaches, vertigo, numbness and tingling in my hands and feet, fatigue and night sweats.  i went for an mri to look for lesions for ms, but instead they found a grade II tectal glioma.  i have only been to one neurosurgeon who brushed it off as nothing to worry about and tried to tell me my sxs had nothing to do with the tumor.  my neurologist on the other hand thinks that it is most definentely and important thing that needs to be monitored and that my sxs have everything to do with the tumor.  it is right now about the size of a dime and has not caused hydrocephalus although i have terrible headaches almost everyday:(  no one really seems to know much about this kind of tumor and how it is caused or how to treat it. i am a mother of 3 beautiful children and a wife to the best husband ever.  i am so scared having this tumor and not having clear answers to my millions of questions.  my next mri is scheduled for this december and i am researching other neurosurgeons to get some other opinions and answers on how to treat this tumor.

[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?

[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.