Ependymoma/subependymoma of the 4th ventricle

@spacemoth , how are you doing now. Are you still holding off on the surgery? My only symptom right now is a dull ear ache. A few people have said they noticed something different with my right eye which is on the same side as the ear ache but I have not had issues with that eye as of yet. If anyone has any advise in the form of a question they had or wished they had asked their Dr because it really gave them some insight as to this problem, I would be interested. Thank you

Hello @jcorcoran , I'm sorry to hear your diagnosis. A tumor in the brain is always a shock that transforms life forever (for ourself and for our familly) As you, my adult children take it very hardly and I feel responsible in spite of myself to make them live this sad experience at a young age. I myself have a slightly different brain tumor, located in the 3rd ventricle (a little to the right side) and sinking towards the brainstem. Inoperable (without causing cognitive damage).

I would like to answer you because I am touched by your questions, hoping that it will help. My own experience proves to me that one is right to take care of one's medical file. You do well to think about the questions to ask doctors. This will allow you to better control the situation and make the right decisions for yourself. The difficulty with brain tumors is that they are often atypical, unique, different from those of others, even with the same diagnostics. Ask your doctor if he has ever treated a tumor like yours. In any case, ask to have the opinion of a second neurologist, even if you have the best. This is a perfectly justified and intelligent question that he should encourage.

For my part, as my tumor is atypical, I met many oncologists. In general, everyone is specialized in his field and will propose it to you. The surgeon will want to cut the tumor, the oncologist will suggest chemotherapy, and the radiation oncologist will want to radiate your brain. This is the standard protocol, the standard, the smallest multiple common, the easiest way. The question is: is this the best way for you? Are there other more appropriate treatments for your specific case?

Personally, I keep in mind that brain cancer is still incurable. Medicine did not find the solution. The only thing doctors do is prolong life. We must therefore ensure the state in which it extends us. Do not hesitate to ask him about the side effects of the treatments.

For example, in my case (which is a little different from yours), I asked many questions (recommended by a doctor I trust) to the radiation oncologist. Rays burn brain cells upstream and downstream of the tumor. You must ask the radiation oncologist what will be the path of the rays and ask what brain structure will be affected. For example, in my case, the rays, after having burned the tumor, necessarily passed through one of the hippocampus. The hippocampus is responsible for the memory. I asked if the damage could be permanent? The answer was yes! I refused this treatment (today, as my chemotherapy, the only treatment I receive, is destroying my tumor, I am happy with this decision and proud of me).

There is a lot of research. Ask questions about other possible treatments that are less invasive and safer. If your doctor does not care about it: change your doctor! Hoping we live long enough to see our grandchildren grow up and to see the day when we will have the medical technology that heals.

I wish you to live very very old.

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.

Thank you very much for your input. I am a firm believer that knowledge is power so I am trying to prepare myself for my 1st visit to discuss my options. I am glad your treatment is going well and you continue to get better. Take care

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.

@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.

I have an appointment with Dr Lachance (neurologist) and Dr Meyer (neurosurgeon). Dr Meyer actually did brain surgery on my wife (now ex) 4 years ago. She had a cyst in the left side of her brain a little bigger than a tennis ball. They were amazed she was functioning normally for so long and was just starting to have motor skills issues with her rt leg. I did a lot of research and asked for Dr Meyer specifically for her. She went to the U of M first and they gave us 3 options, none of which sounded good at all. Dr Meyer told us something totally different and was extremely confident that she would be cured and in the end she was. I happened to get him just by the luck of the drawer unless unbeknownst to me they gave me him because of the prior association. I have done a lot of reading and I hope my doctors recommend waiting. My only issue is an earache which has been bearable and I am not sure I want to risk worse problems than I already have. Did you read the post by beckyziegler @beckyziegler. She had 4th ventricle surgery 10 months ago and you may want to read her post. I wish you (and everyone else who share this challenge) all the best.

@jcorcoran, thinking of you today. I'm sure you're exhausted after your first appointment day. Just wanted to let you know that you were on my mind.

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

Hi... I’m a just turned sixty female from New Zealand and suffered what you did. Stage two tumour in the forth ventricular. Surgery has left some fairly major side effect s. I have complex sixth nerve palsy, nastagmus visual ossilation. My eye sight is a major problem and I’ve had two subsequent eye operation s to help alignment. They now look better but there is no or little function al improvement. I also have balance problems and it’s taken me a year to walk. However, I’m falling sideways and holding onto furniture. I was lead to believe things would improve here but they have not. My life has turned up side down. I cannot drive or earn a living anymore. My eyes and body tires easily.