My original neurosurgeon said it wasn’t an emergency but wanted me to have surgery to remove the mass within 2-3 weeks, or month tops, of my appointment with him (September 26th). We asked him for a Mayo referral. The neurosurgeon I initially spoke to at the Mayo said something similar. It wasn’t an emergency but he would like to see it out in a couple of months. I was having periodic neck pain, dizzy/lightheadedness and ice-pick type headaches. The sharp pain would last anywhere from 10 seconds to 5 minutes and would sometime happen when I was just sitting there, if I would cough or sneeze really hard or bend down to pick something up off the floor. Sometimes they would happen many times a day and sometimes it wouldn’t happen for a couple of weeks. None of my symptoms occur consistently so they don’t believe they are related to the mass. Everyone I’ve met with believes it’s slow growing. My Mayo team (mainly the neuro-oncologist) thought a period of monitoring may be wise because of the high-risk area it is in and potentially more damage than good could come of the surgery especially if it is the subependymoma. They ultimately said as long as I understood the risks that they would support resection as well. I think I would really like it out. I assume it is less involved with my brainstem at this point due to lack of symptoms but I’m not sure if that is correct. I need to ask that at my next appointment. After hearing the potential short-term & long-term side effects my husband and I both got scared off of the surgery that I thought I would be having in October this year. I have a 3.5 year old daughter so not being able to take care of her would devastate me! No real good decision here! Definitely no easy one!

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