Tectal Glioma

[Tracy31]

I am a 31 year old female recently diagnosed with a tectal glioma.  I am told that the hydrocephalus is only mild right now and the growth appears to be slow.  I have only had 1 MRI and have not had any of my burning questions answered.  How long can I live with this?  What symptoms should I truly worry about?  How do I manage my headaches?  How do I keep from being depressed?  What made this appear?  What will likely accelerate it's growth?  How can I slow it's growth?

I am experiencing terrible neck pain which I had at my last visit, but it was dismissed by the Neurosurgeon I saw.  Now the neck pain has traveled into my ears (a popping sensation) and the sides of my head hurt all the time.  I'm miserable and I think I am making it worse by worring (stress pain).

Does anyone have any information from their doctors or research?

[natalia3463]

Hi Tracy, I know this post was from long ago but my husband was just diagnosed with tectal glioma and he is 43.  How are you doing today?????

[rumpled]

Hopefully someone who has done the therapy will respond - in the meantime, I hope your plan allows for second opinions? Perhaps you can check around for another option?

Also, make sure you find out what type of radiation they are planning on using. There are pros and cons to each type - some effect surrounding or pass through tissues more, some less, and there is a risk of side effects.

Also ask about when the radiation will start working.

[cpg999]

HI-
My daughter was diagnosed with a tectal Glioma in Novermber of 2011. She was 16 years old at the time. She had presented with severe hydrocephalus.  The neurosurgeon resectioned as much of the tumor as he could with an 11 hour surgery, and then a third ventriculostomy was performed.  She went through all of this so well with no side effects 6 month MRI's were performed with no changes until this past May, 2013. Her tumor grew about 1 to 1.5 mm and they are not recommending 6 weeks of radiation therapy.  Had anyone else experienced this and has anyone gone through radiation therapy.  My concern is that the radiation will not stop the growth of the tumor.  Does anyone have any experience with proton therapy?

[BTwalker]

Wow...I hear ya! I have the same tumor you have. I was diagnosed 11/04. At that time I was 23. Things will get better, these tumors in adults usually remain low-grade. That means you'll have an uncomfortable MRI in your life every few months. Not the worst thing that could happen. Find a nice neurologist that you like. Life will get better. I remember getting that popping in my ears, its strange that you mentioned that. I also have sleep issues still.
It's really good that they caught it before the hydrocephalus increased severely. I wonder if the CSF aqueduct is completely occlued, or if there is still some flow have it be minimal. Honestly, try not to worry too much it only makes those days more stressful. You might not get all the answers your looking for but your future is not as bleek as it may seem.

[rumpled]

Someone recently posted about this very same thing...
If you are not happy with your doctor, move on! Get copies of your MRI, your tests, and find another doctor. Get another opinion.

http://www.mypacs.net/cases/TECTAL-GLIOMA-114210.html

http://www.childrenshospital.org/az/Site1668/mainpageS1668P0.html

http://www.unipa.it/sparacia/professione/rad/p1/tectal.html

Of course you are worrying! That is very very natural. You just found out you have this... Find a support group in person or on line, or see a counselor to get you over the hump. You have had a shock - of course you are upset!  Knowledge can be the power to overcome as long as you don't use that to freak yourself out more but rather to know what is or is not likely, and what tests and treatments are out there.