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Ependymoma/subependymoma of the 4th ventricle
Brain Tumor | Last Active: Apr 5 10:42am | Replies (61)Comment receiving replies
@mjcory, welcome to Connect. I can understand how this would be an overwhelming diagnosis. If you don't mind me asking and if you are comfortable sharing, is surgery something that has been suggested to you as a treatment option, or is that something that may be needed? What sort of symptoms were you experiencing that triggered the MRI?
Replies to "@mjcory, welcome to Connect. I can understand how this would be an overwhelming diagnosis. If you..."
Hi... I’m having trouble getting around the site. Yes, I had a tumour resection over one year ago... it was a sitting up procedure . The surgeon said, hey you don’t have cancer but I was referred to the cancer society here in New Zealand. The medics do think there may be some residue tumour but cannot be certain. I had symptoms for a long time before hand which over the years became worse. Initially I was wrongly diagnosed by an ENT specialist but later a scan picked up the tumour. It was about row diameters. I had been troubled beforehand with generally feeling always unwell, nausea and dry retching vertigo taste changes and later in spots in front of my eyes. It’s been horrific as now pretty disabled and trying to cope
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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!