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thedawn5
@thedawn5

Posts: 5
Joined: Jan 11, 2018

Tectal pilocytic astrocytoma

Posted by @thedawn5, Tue, Jan 30 9:24am

We found out this past June 2017 that our son, 19 yrs. old, (because of double vision in his left eye peripheral when he looks right), has a non-enhancing lobulated lesion (measures 1.1 x 1.2 x 1.4 cm) involving the right inferior aspect of the tectal plate extending into the superior aspect of the fourth ventricle; relatively unchanged from both a September & December 2017 MRI’s. Doctor states that primary differential remains as stable low-grade glioma and centered in the right inferior colliculus of the tectal plate and surrounding the cerebral aqueduct redemonstrated; relatively unchanged in size and imaging characteristics in comparison to prior studies. Inferiorly it is extending into the superior aspect of the fourth ventricle. His next MRI is in May of this year. This is a wait and see prognosis.

REPLY

Hi Dawn,
I'd like to introduce you to a few other members, especially @helendee whose son also has pilocytic astrocytoma. Also meet @cleahy85 @rossam @markelia @steveninkc @lynda1992. You can learn more about them in this discussion:

– Has anyone been diagnosed with a pilocytic astrocytoma as an adult? http://mayocl.in/2lmRVVZ

The wait and see approach is tough, but not uncommon. Thank goodness the lesion was found so that it can be monitored. How are you both doing? Is your son able to continue with school and/or work?

Thank you, Colleen. I will reach out to the individuals you listed. It is just so scary (fear of the unknown), and frustrating to watch, wait and see. God’s blessings to everyone going through this – brain tumor patients and their families! Yes, my son is in his second year at University, about 2 1/2 hours away from home – scary for me. He does not complain, has a great attitude, plays hockey which he loves and played since he was 4 yrs old (with the blessing of his current doctor). I do notice that there are a few struggles with school, and wonder if the tumor and location of his tumor has anything to do with that, because it does affect his left eye and I see it freeze up or lock periodically, quickly though and then back and aligned. He has found ways to compensate in classrooms, minor head movement – the brain is amazing. He is trying though and we are so very proud of him! I keep hearing these words in my head: “let him live his life,” even though I would like to wrap him in bubble wrap, and make it all go away. Peace, Love and Strength to Everyone out there!

@thedawn5

Thank you, Colleen. I will reach out to the individuals you listed. It is just so scary (fear of the unknown), and frustrating to watch, wait and see. God’s blessings to everyone going through this – brain tumor patients and their families! Yes, my son is in his second year at University, about 2 1/2 hours away from home – scary for me. He does not complain, has a great attitude, plays hockey which he loves and played since he was 4 yrs old (with the blessing of his current doctor). I do notice that there are a few struggles with school, and wonder if the tumor and location of his tumor has anything to do with that, because it does affect his left eye and I see it freeze up or lock periodically, quickly though and then back and aligned. He has found ways to compensate in classrooms, minor head movement – the brain is amazing. He is trying though and we are so very proud of him! I keep hearing these words in my head: “let him live his life,” even though I would like to wrap him in bubble wrap, and make it all go away. Peace, Love and Strength to Everyone out there!

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Hi Dawn,
By @mentioning fellow Connect members, they will get a notification about this discussion and will hopefully join us here.
I’d like to also bring @lmp1 @parker80138 and @markelia into this discussion. They know firsthand what is like being the mother of a young adult diagnosed with brain tumor.

I totally understand what you mean about the tug of war between wanting to let him live his life and wrapping him in bubble wrap. No matter what age, we want to spare and care for our children.

Looking to talk with anyone who has, or knows someone has or had a Tectal (midbrain) Pilocytic Astrocytoma. My 19 year old son was diagnosed in June of 2016.

@thedawn5

Looking to talk with anyone who has, or knows someone has or had a Tectal (midbrain) Pilocytic Astrocytoma. My 19 year old son was diagnosed in June of 2016.

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Correction: He was diagnosed in June of 2017. (not 2016) MRI's in June, Sept, December and upcoming one in May 2018.

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