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Emily has been suffering from severe headaches. In April, Emily had MRIs performed that revealed some abnormalities in her brain that were restricting the flow of spinal fluid and had been the cause of the fluid pressure building up.
Phase 1 –
During April, Emily has spent all by a few days at Columbia Presbyterian Hospital. Emily has had three different brain surgeries to relieve the pressure to her brain (hydrocephalus). In addition, biopsies were taken during the first surgery.
For the most recent surgery, Dr McKhann and Dr Anderson were able to successfully preform an Endoscopic Third Ventriculostomy (ETV) to help the fluid drain.
Phase 2 –
Emily’s brain tumor is a Gliomatosis, a very rare primary brain tumor. She has most likely had it for years.
Due to it's rare location and composition, removal is not an option. It is a low-grade tumor and she has time to learn about different treatment options and make decisions without rushing.
Emily is currently focused on recovering from her surgeries in the last few weeks and has not made plans to see Drs yet but will do so over the next few weeks. Emily’s Dr’s have said they have never seen a tumor like hers, so we know that we have a unique path and journey ahead of us.