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

[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?

[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.

[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

[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  

[hydrochick]

Tectal gliomas fall into a subcategory of brainstem gliomas, which are tumors that occur in the region of the brain between the aqueduct of Sylvius and the fourth ventricle. Other brainstem gliomas include diffuse intrinsic pontine and cervicomedullary.

Tectal gliomas are often low-grade astrocytomas that enlarge the tectum and may obliterate the cerebral aqueduct causing hydrocephalus. In this case, patients typically present with neurologic symptoms resulting from increased intracranial pressure.
Less commonly, they may present with diplopia reflecting an internuclear ophthalmoplegia, indicating involvement of the medial longitudinal fasciculus. Paralysis of upward gaze and accommodation, light-near dissociation (loss of pupillary reflex to light with preservation of pupilloconstriction in response to convergence), eyelid retraction, and convergence-retraction nystagmus may also occur.

[Tumor07]

For us are situation is very different. Cam is only 3 so we are dealing with a life long cancer that is very rare. As I'm sure you know. But thus far I have not found a single person that was diagnosed as a child and lived into adoult hood. I have however found many teenagers and adoults how have this tumor and are doing great. Headache seem to be common among the group. But I am still searching for that person who can say they made it from childhood to adoulthood.

[davidestiberhernandez]

Hi, my name is david.. it was very hard for me to learn as a result i was 10 and still in first grade & i had terrible headaches when i was little(4-14 years old)... so when i reached 13 i got a terrible headache, thats when i was diagnosed with a tectal brainstem glioma..... i am now 31 years old and i get by but is very hard...... bsest of lucks to my little friend.....