Anyone with Tectal Glioma?

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

[Tumor07]

I too am looking for other people with tectal gliomas. I am the mother of a 3 1/2 year old who has a tectal glioma.  He also has secondary hydrocephalus. His tumor is untouchable due to location so his doctors have taken the watch and wait position. They have given him a  10 - 20 year prognosis. They have also told me that once he hits pueberty is when this kind of tumor genrally starts to grow in full force. Once this happens its not good. They have told me that is when they will try to help him but at this time in medical history theres not much they can do and there has not been much sucsess. I am hoping that sonce time is on our side that technology will come along and allow my son to live a longer life. Since he was diagnosed in june of 07 he has had three surgeries. All of wich are related to the hydocephalus. I hope that you or someone out there will have more information on what to expect or what can be done.

~Barbara

[luke8671]

I am 22 years old.  I found out I had hydrocephalus when I was 12 years old and a little later I found out that I had a tectal glioma, which was causing the hydrocephalus.  I have had brain surgery twice, once for the insertion of a shunt, and the second time for the removal of a shunt and had an endoscopic third ventriculostomy, making a path for my cerebral fluid to drain.  Now I get MRI's every few years and I am still alive!  It's hard to determine if I was born with a very mild case of hydrocephalus and just didn't know about it until I started getting the terrible headaches in 6th grade but I know Children's Hospital in Boston is probably the best hospital in research for hydrocephalus.  I am actually doing research on my own to determine ways to shrink my tectal glioma.
I know all cases of hydrocephalus are different but I know there must be a way to cure hydrocephalus and tectal gliomas.  
Look up IP-6, its a vitamin that at a large doses has shown to help treat people with hydrocephalus and tectal gliomas.
Good luck!
Luke

[BTwalker]

I am 28, I was diagnosed with a tectal glioma and hydrocephalus at the same time, a month before my 24th birthday. I too don't know when, or how this tumor came to be. One minute the nurses were calling me an 'over stressed college student', in need of an anti-depressant, next minute they were looking for the closes neonatal neurosurgeon because they were the only docs familiar with this type of condtion. I had a spinal tap in the ER up at school and was rushed in for an emergency 3rd ventriculostomy. I have no shunts though, yay for me, my Dr. said it was a new way of going about things, but by giving me a shunt would soildify another surgery, so he opted not to do it. He's the brain surgeon. I do not remember any discussions of doing anything, I was in so much pain and therefore pretty well sedated. In that time my parents were made to be my health care proxy.
It's now been a little over 4 years, I'm working full-time at my chosen career path(which took a bit longer than I had originally set out for). But, getting a brain tumor is one of those things you plan for. I'm now in the 'watch it' stage, which is kinda like a yearly mammogram a little early in life.  
Knowing I have a tumor helps me to apprieciate life more. I traveled after graduating, I didn't run out and get the first job I could. I didn't have the money either.
I don't know if this helps, but I think it's good to know a few people out there sharing some of your symptoms, concerns, fears etc.

Please Share again,
Shannon
New York

[LoriOh]

I was so happy to find your posts!  My husband Chad was diagnosed with a tectal glioma in January 2009, he is 36 years old.  His presenting symptoms were double vision & headaches but he was also suffering from major panic-depression.  Because of location they cannot do a biopsy or operate so he underwent radiation therapy & chemotherapy in an attempt to shrink the tumor.  Since a biopsy cannot be done they can only use MRI to give tumor grade & they feel confident it is a low-grade (I, II) astrocytoma that has been growing for many, many years. We have been told that a low-grade glioma responds to treatment very slowly & so far it has not started to shrink but is stable.  He begins another round of chemotherapy 5 days per month for next 6 months. It is oral chemo called Temodar. His next MRI is in 3 months.  It has been very difficult finding any information on adults that have a tectal tumor so it is nice to find your posts.  Life changed over night for us but we are finding hope in our doctors & in people like you have seem to be getting along just fine!  I think the initial shock is wearing off.  How often do you have MRI?  Any info on this tumor that you can give me would be greatly appreciated!

[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.

[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.

[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  

[MyEmma23]

Hi all!
Luke, I would love to hear more about any/all research you've been doing.  

Last year I had started a group through Yahoo:  http://*********************/group/tectalglioma/

Anyone afflicted with, or has a loved one with a tectal glioma are welcome to join.  I keep membership restricted to this as I have found a great benefit so members can compare "apples to apples", tumor-wise.  As you know, tectal gliomas tend to have a different prognosis than other brainstem tumors and I have found members feel like they have a place where everyone can relate a little better.

Through this group there is also an area for Files and Links where members are welcome to share any research or information.  As this tumor is somewhat rare, many of us find this information invaluable as we come to understand this tumor a little more.

Lori, I hope Chad is doing well as he battles this tumor (and you too as you support him through this).  I do have several adults in the yahoo group who are living with this tumor and you might find some good information in comparing notes.  I believe there is one other member who has an adult child also taking treatment for the tumor.

In comparing notes with others, I have found MRI schedules vary from one doctor/patient to the next.  When my daughter was dx'd, we were told we would only have to come annually for MRI's and after 5 years of clear scans, we would likely move to MRI's every two years, etc.  I've met some who have had scans every 3 months after being diagnosed and then after a period of time, moved to an annual schedule.  

You will also find that prognosis varies from one opinion to the next.  Some are told that there's likely nothing to worry about as these tend to not grow/enhance while others are told that once their child reaches adolescence, tumor will likely grow and since surgery is not an option, likely looking at chemo...this is one of the main reasons why I wanted to start a support group as comparing notes can really help!

My best to all of you and your families, Amy

[crwstar]

Hi Amy - so glad to hear you've got your group up and running!! Wishing you continued success with your research and ability to connect with and support others.

All the best.

[LoriOh]

Thank you for your post!  I want to become a part of your Yahoo group but could not find how to get there.

Chad is getting better but it has been a rocky road.  He is trying to come off of Decadron now & it is very difficult!  Chemo & radiation were not terrible for him but this steroid has been just horrible!  It has been a necessary evil.

I will keep your daughter in my prayers.  What were her presenting symptoms?  

[MyEmma23]

Hi Lori,
Glad you found the group in Yahoo -didn't realize MedHelp would edit out some of the address.  

I'm happy to hear that Chad is doing better despite his battle with this tumor.  

When Emma was 6 weeks old, she had her first appointment with her pediatrician (my prenatal care was with midwives and after the baby is born, they monitor mom & baby for the first 6 weeks, so I arranged to have Emma meet her doctor when she was 6 weeks old just so he could giver her a "once-over"....never would I have guessed how upside-down that day would become.  He measured her head which was off the growth chart (size-wise for her age), I think she was in the 98th percentile and immediately sent us for an ultra sound and CT scan.  Within 2 hours of first meeting her doctor we had the scans, were back at his office with the confirmation that she had hydrocephalus.  The following week she had a VP shunt.  We had a follow-up MRI prior to her second birthday just to see how everything was in her little noggin and there, they saw the tumor.  The tumor wasn't found on her first MRI's just before her shunt surgery because she had so much fluid in there.  

A lot of people with tectal gliomas also have hydrocephalus.  Some of the people that I've met who were diagnosed in adulthood don't seem to have hydrocephalus as a problem however suffer terribly from headaches/migraines.

[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?