Ependymoma/subependymoma of the 4th ventricle

@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?

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!

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.

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

@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?

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

@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...

Hang in there. It will get better.

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.

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.