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Sat, Feb 16 9:42am · Ependymoma/subependymoma of the 4th ventricle in Brain Tumor

@jcorcoran At the recommendations of the doctors at Mayo we are currently just monitoring my tumor! There was very little to no change from my first MRI. I’m not completely sure I’m 100% comfortable with that but my husband doesn’t agree with taking it out either when the doctors feel there is no harm in waiting. Because of lack of growth & how my tumor presents itself on MRI’s they are leaning more towards it being a subependymoma but they still really won’t know until it’s taken out which is the scary part! Hopefully they are correct in their assumption that it’s a sub and surgery is not immediately needed! Who are you seeing there? My team is Carabenciov (neurologist) and Parney (neurosurgeon). The first time I also saw LaChance (neuro-oncologist). I would like to meet with him again as he’s associated with the CERN foundation.

Dec 3, 2018 · Ependymoma/subependymoma of the 4th ventricle in Brain Tumor

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!

Dec 2, 2018 · Ependymoma/subependymoma of the 4th ventricle in Brain Tumor

Has anyone been diagnosed as having an ependymoma/subepenymoma in the 4th ventricle of your brain? I’m a 40 year old female and a recent MRI showed a mass approximately 1.5 cm in its largest spot. My doctors are unsure which type it is at this point and after the last appointment we decided to monitor for 2 months (3 months from initial MRI) to see what it does! Doctors also feel I’m asymptomatic even though there were “symptoms” that made my initial doctor order the MRI. I’m also scared of what could happen during surgery as it’s very near my brain stem but at the same time I’m scared to leave it in there since we don’t know exactly what type it is. Anyone else have this type of tumor? What were your symptoms? Did you have surgery and were there any deficits? Going in for my next MRI in Rochester on December 13th.