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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
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Avatar universal
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
Helpful - 1
723288 tn?1230778799
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
Helpful - 1
Avatar universal
My son (now 2) was born with hydrocephalus caused by a tumor in his third ventricle. At 14 days old he had surgery (endoscopic third ventriculostomy). He had weekly health visitor visits to begin with to measure his head and MRI scans every 3 months. As time has passed and due my son developing normally, all visits have decreased. His last MRI scan (October 16) has shown stable appearances of the tactal plate lesion as well as the ventriculostomy and ventricular size. I am hopeful for my sons future and feel greatful that others have shared thier experiences. This is the first time I have read personal experiences and feel less alone in knowing what might lay ahead.
Helpful - 0
2 Comments
Hi
Please let me know how is your son doing now.
My son 3.5years got the etv.we go For 3 months scan to monitor the glioma
Hi, is anyone on this thread about to chat?

Is this thread still live?

Thank you

Liz
Avatar universal
My husband, 43, was just diagnosed with tectal glioma yesterday.  We are shocked, the only symptom he has is headaches.  After a month of daily headaches, he went in for an MRI with contrast and they found a 1 cm. glioma on his brain stem.  Any and all information would be appreciated.  Another doctor is saying it might be a hamartoma??
Helpful - 0
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Hi there..I was diagnosed with tectal glioma last year (also at age 43). I'm sorry for your news and hope you are holding up ok. All these years later...How is your husband doing now?
Avatar universal
My 16 year old daughter has just been diagnosed with exactly the same, I'm very interested on how you have gone with this?
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Avatar universal
I too had hirsutism....and a textual plate glioma. Still struggling and just thru my 7th operation in 2 years. I would like to know how to shrink the glioma...the symptoms are sooo annoying.
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Avatar universal
Ive had my te tal plate glioma/hydro/etv since age 8.. what areodds of e en getting these? Im desperately trying to get as much info as possible...problems getting worse and my mother used to take care of it all...im 29
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Avatar universal
It started with a major stabbing pain in my head which was unbearable an abnormal pain way worse than a headache.  I made it with help to the GP and collapsed there supposedly died for 7 minutes. I was bought around and sent to hospital by ambulance.. At the hospital they werent sure to send me to heart or neuro my wife said neuro and luckily thats where i went because time was limited.. I had a obstructive hydrocephalus and was sent to urgent brain surgery and had a neuroendoscopic third ventriclostomy. I have been monitored with mri since which the tumour is in the aquaduct next to brain stem.  Still growing for five years finally ran out of room. I kept putting off radiation or chemo. 12 months ago my wife found information about Maitake Mushrooms.  I got them sent from America and have been using for the last 12 months my last mri has shown a shrinkage of the tumour that had run out of room in the cavity 20 percent shrinkage. Its nothing less than a miracle.. I am now being monitored for the next 12 months to see if this is a pattern of shrinkage. I am putting this online in case someone is looking for something and i am sure this is working for me.. I had gp test my blood when i started then 3 months after to ensure liver function was not affected and it wasnt.  The tablets are Maitake fraction D 4x strength they are special mushrooms that boosts immunity system and attacks tumours.. I hope this might help someone in need and the hospital will be writing up my case after results in one year are still good. Hoping this helps someone.  Russel Rankin
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1 Comments
Thank you for your article.  Our daughter, Jillian, has a Juvenile Pilocytic Astrocytoma on her brainstem, originally diagnosed in 2001, and now growing again, after remaining stable for 17 years. I would appreciate communicating directly with you. Please reply to ***@****. Thanks, Jim Kuntz
Avatar universal
Hello,
I am 48 years old.
I lived in total naivety of my condition until
I had a sinus cat scan about 8 years ago to diagnose recurrent "sinus" infections.  As I'm sure you all know, it was not sinus infection, but severe hydrocephalus.  When the doc called to tell me this, I said, "hydro what?"
I was born 3 months prematurely and have always had a much larger than  avg head.  I graduated in the top 7% of my h.s. Class and went on to graduate college with a computer science/math degree and work in optics at a prominent research lab.
All I have to say, is if the technology to detect hydrocephalus when I was born in the 1960s or even in the 1970s, I believe it would have been pigeon holed into special ed with no hope for advancing my education or career.
I have had memory issues for a long time and have relied heavily on notes.
About 6months ago I started having very severe headaches.  I had an ETV this January.  Won't realize all the benefits of surgery for another 4 months or so but I do believe,  I have a new lease on life!
Tectal glioma will be followed with regular scans.  My follow up care is now with an oncologist.
Smurf

Best wishes to all of you dealing with this disease!
Helpful - 0
1 Comments
Hi there..how are you doing with your tectal glioma after these years? I am early 40s, diagnosed a year ago..learning a great deal but mostly looking for others with the same path. Thanks for sharing your story and hope you are well.
Avatar universal
My son was diagnosed with a tectal glioma at age 5. And had a VP shunt placed at that age.  He is now 15.  He started with MRI's every 3 months and then gradually decreased the frequency until we were at annual scans.  At 11, he started have some small tumor growth and some internal changes with the tumor.  Still no treatment required, only back to every 3 month scans.  Then he needed a shunt revision. He had about one revision a year until last year when he had multiple revisions and a shunt infection.  He has recovered almost fully from those surgeries and the infection.  His tumor size is stable.  Frankly, his biggest issue has not been with the tumor per se, but rather with the shunt.  He is not a candidate for a third ventriculostomy, unfortunately.  
Helpful - 0
Avatar universal
Hi,
I have a daughter and she is 14 years old and has a tectal plate glioma, also an ETV was done due the hydrocephalus.  The tumor was discover July 2013.
We go back to Duke hospital every 6 months now. She has headaches every day and is taking Elavil daily  (that helps) the headaches are not so severe.
I hope your daughter is doing better now.
Helpful - 0
Avatar universal
Hi my wife has been diagnosed with a tectal glioma and she's 38. I have tried to join this group many times in the last few months and keep getting knocked back. We have had countless tests, neurosurgeons/neurologists and nobody can agree on what to do or what she has. She hasn't got hydrocephalus yet and only seems to have had vertigo as her main symptom. She had her hearing tested the other month and we got the results to say that they have picked up issues with her and that it is commonly from a lesion in the brain stem. We are desperate to talk to others with this same problem. Thanks..cliff
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Avatar universal
My son was diagnosed in May of 2014.  I too would like to join your group.
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Avatar universal
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
Helpful - 0
1 Comments
Hi there..How are you doing with your tectal glioma now? Hope you are well.
Avatar universal
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!
Helpful - 0
1 Comments
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?
Avatar universal
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.
Helpful - 0
Avatar universal
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.
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Avatar universal
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.
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4365642 tn?1353447532
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
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.
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Avatar universal
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?
Helpful - 0
1908294 tn?1321930152
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.
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