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

[Bing1130]

My son was diagnosed in May of 2014.  I too would like to join your group.

[peaceandlove622]

Hy maike,

am 32 years old with tectal glioma diagnosed 2 years back mistakenly. The best doctors and neurosurgeon I have seen they told me not to worry and it will regress with time. Please try to think positive, don't be negative.
Even this go worst, which should not, there is gamma knife which can treat the glioma. Google it. If you have any more info about how to treat this kind of glioma if grows please share it here.

Thanks, keep up, be positive. Don't panic yr daughter and keep yearly MRI

[pdxsch]

Hi there..How are you doing with your tectal glioma now? Hope you are well.

[Maike191]

My daughter was accidentally diagnosed with a tectal glioma that caused a hydrocephalus. The MRI was done end of october and in December she got. her ventrikulostomy. Everything went fine, but the diagnosis is very difficult for us to live with. My daughter is 14 years old and she didn't have any Symptoms besides a monthly headache for a few hours that was thought to be a migraine. The Doctors tell us not to worry and want only to watch her, First After three months, then, with nothing showing, after 6 months, then after 9 and finale every year for the next 10-15 years. Her prognosis is relatively good, because she is relatively old and the glioma is now 1,4cm x 0,9cm. They don't think it will cause problems, but nobody can guarantee a positive outcome... I am very interested in learning about other children and teenagers with tectal gliomas simply in order to be able to cope with all this. Thanks for any messages!

[lizvic]

Hi

My daughter was getting monthly headaches that lasted just a few hours.  The doctors thought hers were migraine too.  How is your daughter now?

[iramyr]

I am Russian (sorry for my grammar). My son is 4 years old. We were diagnosed with hydrocephalus due to tectal glioma stage I a month ago. He became very quiet, stopped playing, had problems with depth perception, he tripped over his feet and fell a LOT. Right before the surgery he couldn't hold a spoon. We underwent VP shunt surgery and he is doing good. Our lives changed over night. I panicked, blamed myself, cried, then I realized that it is what it is and I will just help him live to his fullest potential. I appreciate the time I spend with my son a lot more now. Our Doc is the best, we are blessed to have him. He gave me my little boy back. Prognoses are the same as above "in some tumor doesn't grow, my son may be the one" and a traditional "wait and see".Recently I did research online and realized that tumor does grow slowly but surely. At about age 13 to 16 kids are sent to oncologist to undergo chemo that might or might not help. It breaks my heart to realize that my little boy has a difficult journey that is still yet to come. We take it one day at a time and pray for the best.
I was wondering if anyone knows any herbs or vitamins or anything that might help with tumor. The only info I know is on  
http://www.hydroassoc.org/ http://www.ninds.nih.gov/disorders/hydrocephalus/hydrocephalus.htm
http://www.ninds.nih.gov/disorders/brainandspinaltumors/detail_brainandspinaltumors.htm#182943060
Good Luck to all of You out there and thank you for posting your comments it means a lot.

[NYBrad]

My son experienced headaches, tintinitis and fainting throughout his pre-teen and teen years. He was finally diagnosed with tectal glioma last summer and had surgery at Sloan Kettering. a shunt was put in. Almost immediately his symptoms disappeared. He is now 21 and feeling very healthy. Unfortunately other nodes were discovered, since he has MRIs three times a year in order to monitor his situation. We are going to meet with his oncologist and neurosurgeon in two days. The tumor that was operated on was determined to be level 1, meaning non-malignant. We are desperately hoping this second growth is also non-cancerous, though we are terrified by possible expansion.

[believe1son]

Son diagnosed at 5 is now 8. Has ETV and was symptom free for those three years.  Began developing symptoms and is going in for 2nd ETV.  Praying for more symptom free days ahead.