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.

Liked by mrector

@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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@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!

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@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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Hello, I am 47 years old, a female and 8 months out from fourth ventricle surgery to remove an Ependymoma. I wasn't really given a choice. It was about 2cm cube. I had one incident of numb face and forgetfulness that lasted less than two minutes. I thought it was my sinuses. I had been struggling with vertigo for about a year. I am better, however not right. I have vertigo all the time. I see double and one eye jumps. I am grateful to be alive, however I did not have a clue what was going to happen. Cognitive level is the same, physical is a struggle. I wish I could be more helpful, I found this desperately searching for answers as to why recovery seems so slow. I find it is normal, which sucks. Sorry

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@marcyprof

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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@marcyprof and @beckyziegler I wish to welcome you both to Connect, and to connect you with @mjcory

Marcy, tu écris très bien. Bienvenue. How are you tolerating the chemotherapy? Side effects?

Becky, I'm so glad that your internet search helped you find this group talking about ependymoma. Will you need treatment beyond surgery?

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Hi,
No, I had physical , therapy for two months, and follow up MRIs but that is it. I go back in April for a year and I pray I feel like myself.
Thanks

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@colleenyoung

@marcyprof and @beckyziegler I wish to welcome you both to Connect, and to connect you with @mjcory

Marcy, tu écris très bien. Bienvenue. How are you tolerating the chemotherapy? Side effects?

Becky, I'm so glad that your internet search helped you find this group talking about ependymoma. Will you need treatment beyond surgery?

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@colleenyoung Allo, thank you to encourage me. I had my second intra-arterial chemiotherapy last wenesday, 3th of january. It was a special way to celebrate the new year! I felt very tired sunday as if the carboplatin-drug needs couple of days to destroy my cells. I don't know if the sides effects will grow at each treatment. This second time I had big nauseas for 24 hrs for the first time. Hopefully I had some drugs against that. I feel better now. Yesterday I force myself to do zumba and piyo exercises even I didn't feel healthy. I am convinced it will help me to survive longer and better. It was hard but I did it the best I could. It was snowing last night in Montreal. This morning there's a foot of white snow in my driveway. I'm going to shovel, it will be the sport of my day. Happy new year everybody! I wish you to find pleasure and peace in the small and simple everyday's gestures. Shoveling snow allows to get into a kind of meditation time. Hummmmm…

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Hang in there. It will get better.

Liked by marcyprof

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Hello. I am 41 and was diagnosed with a subependymoma in the 4th ventrical in 2016. I went to an ENT for vertigo, which I was getting about once a year to year and a half and I mostly had the dizziness at night or in the morning and it would last for about 2-3 days. It first came up in pregnancy with my first child. By the time my ENT appointment came, 6 months later and while not currently having symptoms, he ordered me an MRI and referred me to a Neurosurgeon. They told me 1cm X 1cm X 1cm. I had quarterly MRIs with not growth and no obstructions. I had some other strange neuro issues and it was decided between my team that it was all unconnected. Just this past week, my vertigo came up and I was able to get into my ENTs office with a same day appoint,ent and they ran all the same tests. It was concluded that the tests showed my eye movement and dizziness was connected to my brain stem. I forgot to mention that I just did a full year without growth as of Nov. I had really gotten comfortable with letting it sit and not growing and not having any connected side effects. Currently, the vertigo is on day 5, which is the longest I have ever had it. I did get a second opinion from a dizzy specialist and he ran further balance tests and he recommended me to a different neurosurgeon. At this point, I am really hoping this dizziness is not the new normal and I can go back to feeling normal. My original Neurosurgeon left his practice due to a personal medical issue, and I am currently in this in between phase, but while symptoms are flared up. I am in Pittsburgh, PA. Thank you for sharing your stories. It is really nice to know I am not alone.

Liked by mjcory

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Hello, I am a 55 year old male in MN who just had an MRI on 2/8/19 due to ear pain. I thought it was an ear infection but ears were clear. On 2/11/19 I was told I have a brain tumor, probable subependymoma. It is 2 cm X 1 cm which from what I have been able to research is large for a ­subependymoma. I am actually really calm about the entire deal. I just feel bad for my adult children who are taking it harder than me. I have my 1st appointment on 2/19/19 at the Mayo in Rochester. 5 years ago my now ex wife needed a brain surgery for a 3" cyst in her brain. I researched the Drs and requested their best who was the head of all Mayo surgeons. I did not ask for him for my case but that is who I was assigned. I am not sure if I am happy about that or not considering if they put their best on it, it is probably more serious than I know. mjcory, I am wondering what you ended up doing and how are you now.

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@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

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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.

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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.

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@marcyprof

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.

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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

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@beckyziegler

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.

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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.

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