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mjcory
@mjcory

Posts: 2
Joined: Dec 03, 2018

Ependymoma/subependymoma of the 4th ventricle

Posted by @mjcory, Sun, Dec 2 6:42pm

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.

Liked by mrector

REPLY

@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?

@JustinMcClanahan

@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?

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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!

@mjcory

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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Allo, yours words touched me profoundly. You are very courageous to live this situation. (Sorry for my bad english, I'm french canadian. I hope I will find the good words to share). I'm 53 year old female with a recent IRM which reveal a brain tumeur. It's an atypical tumor near the third ventricle which is, like you very central. All my neuros doctors (I had seen several), don't what to take it off by chirurgical because it can cause cognitive damage. First I stress because my doctor waited to see how it grows. Like you, I would really like it out. Finally, it appears to be a slow growing and I understand that my doctor wants to take this time to find the good treatment for me. Each tumor is unique and there's some danger to follow quickly the "standard protocol" (extract the tumor/temodal-chemo/radiotherapy). Maybe they will offer something special for you. Waiting is difficult but maybe it's better then loosing parts of what make's you who you are, you, mother of your so young daughter (I have 2 twenties years old-daughters). Finally, I have only the chemotherapy for this moment and we'll see what happen (it is an intra arterial chemo with carboplatin – which is not standard). Slow growing tumor is good. I had a biopsy but it did not reveal anything for sure except that is unusual. I hang on this atypical diagnostic like a rift, an opening for hope . Do you know the Leonard Cohen's song: "there is a crack, a crack on everything: that's where the light gets in". Keep hope, g@@ood luck, best wishes.

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