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

[jtater86]

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

[luckyrussel]

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

[jckuntz24]

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

[murf07]

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!

[pdxsch]

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.

[xtine331]

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.  

[marsky13]

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.

[Cliffb75]

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