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Ependymoma/subependymoma of the 4th ventricle

Posted by mjcory @mjcory, Dec 2, 2018

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.

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annrmarie | @annrmarie | Mar 12, 2019
In reply to @beckyziegler "Hello, Things are about the same. I am waiting for my year appt in about 6..." + (show)
@beckyziegler

Hello, Things are about the same. I am waiting for my year appt in about 6 weeks. I have been working since the end of Thanksgiving. I still have balance issues and vision problems. I am not where I was, and improvement is so slow. I rely on my classroom aide for a lot. I am believing for recovery and look forward to it.

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Hi Becky...the site wont let me log in so I am having to reply directly from a email forwarded to me..I did try days ago but couldnt...I just want to say that in the last three days the visual olliskation has settled down a lot. This is after 15 months.you are younger so things are likely to improve. I still have the double vision but the eye muscles were cut so that will not go

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annrmarie | @annrmarie | Mar 12, 2019
In reply to @colleenyoung "@annemaree you might find these tips helpful for getting around the site: - Getting Started on..." + (show)
@colleenyoung

@annemaree you might find these tips helpful for getting around the site:
- Getting Started on Connect https://connect.mayoclinic.org/get-started-on-connect/

If you have specific questions about how things work or setting your preferences, etc., feel free to send me a message through the contact form: https://connect.mayoclinic.org/contact-a-community-moderator/

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No...the site rejects my user name and email address ...but it also acknowledges that these are correct .

I cant actually log in

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beckyziegler | @beckyziegler | Mar 12, 2019

Hi! Thanks for letting me know about the 15 months. I am trying to hang in there, some days easier than others. I would like to find anyone who has had this procedure done and how long it took them to reach each milestone. Being so far from my surgeon keeps me kind of cut off from others. When I go back in April that is one thing I plan on asking him. There are so many different kinds its hard to find an ependymoma in the fourth ventricle. I'm so glad you are doing better. I believe yours will also improve. Unfortunately one thing everyone agrees upon is that it is slow.

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1 reply
annrmarie | @annrmarie | Mar 12, 2019
In reply to @beckyziegler "Hi! Thanks for letting me know about the 15 months. I am trying to hang in..." + (show)
@beckyziegler

Hi! Thanks for letting me know about the 15 months. I am trying to hang in there, some days easier than others. I would like to find anyone who has had this procedure done and how long it took them to reach each milestone. Being so far from my surgeon keeps me kind of cut off from others. When I go back in April that is one thing I plan on asking him. There are so many different kinds its hard to find an ependymoma in the fourth ventricle. I'm so glad you are doing better. I believe yours will also improve. Unfortunately one thing everyone agrees upon is that it is slow.

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Hi...it is a rare tumour found mostly in children.i understand that only a few adults in nz have had this. To date you are the only one I've communicated with...what problems do you have with the eyes? Are they aligned ? And do you know what stage the tumour was. I'm guessing a benign stage ?

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beckyziegler | @beckyziegler | Mar 12, 2019

Yes, it was benign. It was almost a grade II and the radiologist said she would not consider doing radiology for now. My cerebellum is still causing balance problems. My eyes are tracking in some areas, however, my right eye constantly jumps and my left a little. I feel like they are trying to focus and due to my cerebellum, it is a constant moving view. It has to be rare, I see several kids and no adults, until you. I have been to ophiologist, however, have yet to see the neurological one. I have tried to find some information on recovery and its all really vague. I'm sure the rarity is part to blame.

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4 replies
annrmarie | @annrmarie | Mar 12, 2019

You are lucky really..my doctor failed to do anything for two years and I do worry about it coming back..yes I had the same problems but my worse I think..do you patch one eye although I think they told you not too..I did for months and months..what about prism glasses for you ?? I'm going back to using one eye as prisms didnt work..I know it's awful waiting but no 9ne really has the answers.. but in your case it will most likely come right..but it takes a long time..my surgeon said 2 to 3 years..maybe we could become medical gu8mie pigs or something..as we are so rare

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annrmarie | @annrmarie | Mar 12, 2019
In reply to @beckyziegler "Yes, it was benign. It was almost a grade II and the radiologist said she would..." + (show)
@beckyziegler

Yes, it was benign. It was almost a grade II and the radiologist said she would not consider doing radiology for now. My cerebellum is still causing balance problems. My eyes are tracking in some areas, however, my right eye constantly jumps and my left a little. I feel like they are trying to focus and due to my cerebellum, it is a constant moving view. It has to be rare, I see several kids and no adults, until you. I have been to ophiologist, however, have yet to see the neurological one. I have tried to find some information on recovery and its all really vague. I'm sure the rarity is part to blame.

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Yes I know all about jumping eyes but mine have improved

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annrmarie | @annrmarie | Mar 12, 2019
In reply to @beckyziegler "Yes, it was benign. It was almost a grade II and the radiologist said she would..." + (show)
@beckyziegler

Yes, it was benign. It was almost a grade II and the radiologist said she would not consider doing radiology for now. My cerebellum is still causing balance problems. My eyes are tracking in some areas, however, my right eye constantly jumps and my left a little. I feel like they are trying to focus and due to my cerebellum, it is a constant moving view. It has to be rare, I see several kids and no adults, until you. I have been to ophiologist, however, have yet to see the neurological one. I have tried to find some information on recovery and its all really vague. I'm sure the rarity is part to blame.

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Have you tried patching one eye to drive...? I have done that but it does take awhile to adjust...I found I could patch and adjust but then went to prisms and adjust to that...although they didnt work if that makes sense
..I know it's not good to change the lens often but the eyes to adjust in time...

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annrmarie | @annrmarie | Mar 12, 2019
In reply to @beckyziegler "Yes, it was benign. It was almost a grade II and the radiologist said she would..." + (show)
@beckyziegler

Yes, it was benign. It was almost a grade II and the radiologist said she would not consider doing radiology for now. My cerebellum is still causing balance problems. My eyes are tracking in some areas, however, my right eye constantly jumps and my left a little. I feel like they are trying to focus and due to my cerebellum, it is a constant moving view. It has to be rare, I see several kids and no adults, until you. I have been to ophiologist, however, have yet to see the neurological one. I have tried to find some information on recovery and its all really vague. I'm sure the rarity is part to blame.

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Me again !! I tried to find answers for months but gave up...I think it's about patience...as I said my eyes are not flickering as much now...go at your own pace..you are very very lucky it was found before cancer

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beckyziegler | @beckyziegler | Mar 13, 2019

I did eye patches for about one month. I cannot drive because of balance. I have never tried prism glasses. I think my balance is my main problem. I think I could wear an eye patch if If meant I could drive. Wow, 2 to 3 years is a long time.

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