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Ependymoma/subependymoma of the 4th ventricle
Brain Tumor | Last Active: Apr 5, 2024 | Replies (61)Comment receiving replies
Hi, I am now almost 10 months post op for an ependymoma in the fourth ventricle. I am still struggling with my vision and balance. I did receive a call from my surgeon's nurse and she informed me that It had not been very long. She said that they usually tell people 18 months. I had no clue. I understand the reluctance to tell people this, however they need to know. I have had really bad depression because I felt like I wasn't progressing well. I am about three hours away from my surgeon and my local GP has no experience with this type of surgery. That makes it even harder. So, basically I have good days where I am patiently waiting, and days when I feel like I'm stuck inside of jail. I returned to work hoping it would help and that is a catch 22. I know others have it worse and I am blessed to not have needed radiation or chemo, I just wish I felt that way. I am 47 and I feel like 87. Sorry for the rant, I want to be positive for those who need it and I really do believe I will get better. I wasn't given any other option than surgery. I know if they would have told me what I was in for, I would have fought having surgery for as long as possible.
Replies to "Hi, I am now almost 10 months post op for an ependymoma in the fourth ventricle...."
Hi.. I’m a just 60 year old female. Residing in New Zealand. I had a forth ventricle tumour removed just over a year ago. I had symptoms for many years which worsened over time ... nausea, dry retching balance problems. The tumour was said to be a dreaded two. They think all the tumour was removed... the surgeon states this, however the hospital does think they may be some residue although not sure. I e had two further mri s since with no cig
Hange. As a result of the operation I’m live ng with some fairly major side effects that have continued for over a year and only marginally improved. I’ve complex sixth nerve palsy, nastagmus and constant visual ossilation. My eye sight is a mess. I also have significant balance problems and walk holding onto gunriture. I can’t legally drive nor can I rerun to work. It has not been fun. Annemaree
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Thank you very much for getting back to me. In the initial radiology report the radiologist stated imagining characteristics favor that it is a subependymoma in the 4th ventricle. That was from the radiologist at the imagining facility and not the Mayo but I assume he knows what he is talking about. He also offered that it may be an ependymoma or a choroid plexus papilloma. I am not sure how they figure out which one it is and each one probably would be dealt with differently. I can only go to my appointment with a positive attitude and hopefully some intelligent questions. I can not say how thankful I am for your reply. As I said, I have a dull earache (pain 3-4) about 60% of the time but nothing I can't handle. I hope one of the options they put out there is to wait until my symptoms actually progress to a level where I need to act. Ultimately I know it is my decision regardless of what they say but I would obviously feel better if they were on board. Lastly, please do not ever apologize for a rant, (fyi, that was not even close to a rant) in my opinion you have paid the price and earned the right to rant. If you ever feel the need to go into an all out, get after it rant, please feel free to send me a private message and I will be glad to listen. I truly hope for the best for you and would love to hear how you are progressing. I will post what is presented to me on Tuesday. And again, thank you for getting back to me and stay positive, you are bright star in my dark sky right now.