Benign Vestibular Schwannoma

Posted by janoh @janoh, Aug 13, 2019

My 39 year old daughter suffered a brain hemorrhage in January. She had a Craniotomy and is in a semi-conscious state. She has a feeding tube and trach. When they did the MRI they found she also has a benign Vestibular Schwannoma which is pressing on her brain stem. At that time, they said the brain bleed was their priority but she should be seen by a neurosurgeon. Last week we saw the neurosurgeon and he said the surgery to remove this would be very, very risky. She could have another bleed, be paralyzed or even die. If we don’t, the tumor could grow (which it has already) and press on her brainstem and cause the same problems.
We are waiting to see her neurologist to discuss her neurological state. Than going to seek a second opinion. Also, we need to find out if there are other options besides surgery.
Any one with suggestions? We have a very hard decision to make…my daughter is a young mother of two babies and a fiancé and we are her advocates, as she cannot speak. Thank You.

@janoh Bless you for advocating for her. I'm sure nothing is easy and the decisions are difficult to make. I don't have any experience with Cancer treatment, but in the documentary about Mayo Clinic, they had a segment about treating a toddler with brain cancer using Proton beam therapy to target the cancer without surgery. You may want to contact Mayo and ask about it. https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/conditions-treated/orc-20454355

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@janoh, this must be so heart-wrenching as a mother. Should you wish to seek a second opinion at Mayo Clinic, I'd like to tell you about the 48-hour access program for brain tumors. Experts at the Mayo Clinic can help navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access program.

Is consultation with Mayo Clinic a possibility for your daughter? Can she be moved?

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Thank You!
We are seeking other opinions at this time. My daughter is semi-conscious and difficult to transport. Insurance is another problem. She has Caresource.

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