18 yr old with brain tumor in right thalamus

Posted by Markelia @markelia, Sep 9, 2016

Hi! My daughter is a Sophomore in College and was experiencing increasing severe migraines. Late June an MRI showed that she had a tumor in her right thalamus that was blocking one of her ventricles and caused a build up of cerebral fluid in her brain (hydrocephalus). 3 of her 4 ventricles were enlarged (4 times the normal size for her age). In July she had Endoscopic Third Ventriculostomy to relieve the pressure. A catheter was inserted in her brain to create an alternate port for the fluid to circulate. This has helped significantly to relieve her of the migraines. Now she has a headache about once a week and they aren't more than a 3 on a scale of 1-10 in severity. A follow-up MRI showed that the pressure was being reduced and her ventricles were shrinking some. Our local neurosurgeon shared that the next steps would be to biopsy the tumor although it seems benign since it is slow growing from MRI to MRI not much has changed. The next step would then be to remove the tumor. I got a 2nd opinion from a neurosurgeon at Duke and he agreed that we should biopsy the tumor first but said he would not remove it given that it is in the most inner part and center of her brain.

My daughter wants to complete the semester at school so both agreed we could wait until her Winter break and we want to honor that but not at the expense of her getting worse.

Last week, my daughter shared that she has been experiencing numbness. Her entire face has been going numb about 3 times a day and lasts for 30-60 sec each occurrence. She also has been experiencing where her right hand or foot goes numb. These are all new symptoms for her. Last Sat she came home and we repeated the MRI to see if the tumor moved or grew and it has not. The local neurosurgeon has asked us to continue to monitor the numbness and if it worsens or if she develops other symptoms, to call back in as we may need to accelerate the biopsy and the removal.

We are concerned and wondering if we should move forward more quickly with the biopsy and if anyone has had a tumor removed from the right thalamus?

We also are considering a 3rd opinion since both neurosurgeons has such different ideas about how we would ultimately handle the tumor all while not yet knowing the type of tumor via the biopsy.

We could use some advice.

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Markelia | @markelia | Sep 9, 2016

We live in Charlotte, NC and the second opinion was from Dr. Friedman at Duke's Brain Tumor Center.

Markelia | @markelia | Sep 9, 2016

Also-her optic nerves are swollen-the neurosurgeon says it is due to the inflammation from the fluid build up. We are hoping it we subside!

Colleen Young, Connect Director | @colleenyoung | Sep 9, 2016

Hi @markelia. I'm so glad that you found Mayo Clinic Connect. Let me connect you with members who might be able provide some insight based on their experience with brain tumors and hydrocephalus. Please meet @safetyshield @cynaburst @audrapopp and @parker80138.

If you'd like to get a third opinion from experts at the Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours Be sure to mention the Brain Tumor 48-access program. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan.

Cynaburst, Alumna Mentor | @cynaburst | Sep 10, 2016

Wow. How scary for you both. I agree that if her symptoms are increasing perhaps it is time for another opinion. Mayo is certainly a great place to go but there are others as well. Unfortunately medicine is an inexact art so you have to go with your gut and the doc you like best and have the most faith in.

Colleen Young, Connect Director | @colleenyoung | Sep 15, 2016

@markelia How are you and your daughter doing? Did you decide to move forward with the biopsy?
Thinking about you and your family.

Markelia | @markelia | Oct 24, 2016

Keliyah began experiencing numbness so we did move forward with the biopsy. She had it 2 weeks ago today. The head frame was the most difficult part of her biopsy as it was painful having the screws hold the frame to her head. It was actually quite traumatic. We are still waiting on some markers but we have learned that she has a Diffused Astrocytoma Grade 2, primary. Does anyone have any experience with this? Again, its in her right thalamus, so we wont be removing it and a treatment plan will be communicated once they get the final markers within the next week or so. When I read about diffused astrocytomas I am very concerned.

Scott, Volunteer Mentor | @IndianaScott | Oct 25, 2016

Hello @markelia. I am sorry to read about your daughter's new challenges. I know the stereotactic biopsy was also a challenging event for my wife. While in a different location, my wife's brain tumor was highly diffused. Location also precluded resection beyond her initial emergency surgery. Her neuro-oncologist was wonderful and was consistently working on creative interventions, pharmacological combinations, and support structures for her.

I send you peace and strength!

Colleen Young, Connect Director | @colleenyoung | Oct 27, 2016

@markelia I'm sure you've already searched for information on the internet, but here's a brief overview of Astrocytomas from the American Brain Tumor Association http://bit.ly/2eUn1Bq, which explains the different types.

I'm bringing in fellow Connect members @rossam @parker80138 @trivon @121861 @egee202 @kansastumor who have been talking about astrocytomas in this discussion about Anaplastic Astrocytoma http://mayocl.in/2e0InOQ I hope they will share their experiences with you.

Markelia | @markelia | Oct 27, 2016

In reply to @colleenyoung "@markelia I'm sure you've already searched for information on the internet, but here's a brief overview..." + (show)

Thanks Colleen. I actually contacted the ABTA earlier this week and connected with them live today and received some good information. Thanks for moderating these discussion groups!