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.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

pma2022 | @pma2022 | Nov 23, 2022

In reply to @lioness31277 "Hi All, Had partial resection of Subependamoma of 4th ventricle (not full because part was wrapped..." + (show)

@lioness31277

Hi All,

Had partial resection of Subependamoma of 4th ventricle (not full because part was wrapped around brain stem, not see on MRI) with laminectomy in 2015. Had worsening symptoms of chronic nausea, falling, missing for car door handle and missing, loosing balance. Docs were not sure symptoms were from tumor. Things were getting worse over two years so wanted it out. My surgeon told me it would be 6-8 week recovery. Went in to see him at 6 weeks and he asked why was I using a walker. I told him without out I would fall because I felt like I was just going to fall forward all the time. My head felt so heavy. I could not see my phone, TV, or anything clearly. I needed dark, quiet room as it felt like severe concussion. I developed this weird thing where I would all of a sudden take in a huge breath that sounded like someone scared me. It use to scare my husband and son. It lessened over the past 7 years, but still happens spontaneously. I call it my Terets. I know everyone is different, but I do beleive after much research and discussions with my neurosurgeon that some of my side effects of this surgery are more common than not. I wish doctors would be honest as there are enough people with this surgery to see the common thread in all of us. The truth is, chronic symptoms of diziness, and eye issues will most likely be permanent. The severity of those symptoms do lessen some over 3-4 years, but never fully go away. I also have memory and processing issues. I just turned 50, but had to deal with the surgery and all its symptoms in my forties. I have word finding issues and it takes me awhile to figure out how to do things where as before the surgery, my memory was amazing and I could multitask really well . Now single task is challenging and slow. I fall 2-3 times a year sometimes hurting myself. Trying to navigate in the dark or balance with my eyes closed causes extreme unbalance. I can read foe a 1/2 hour now before the words become blurry and the nausea starts. My memory is that of a beginning dementia patient. When I am tired those symptoms all get worse. My husband and son are always telling me I just asked that question.

If you were to ask me if I would do the surgery again if the tumor grew back, the answer is no way. I do not even see the sense of my yearly MRI’s as no matter what, not doing it again. On recent MRI of head and spine a small benign looking tumor was found in my neck. This was supposed to be the last MRI before they allowed me to go to every 2 years between MRIs. The spinal MRI was just to confirm no Subependamomas were on spine. Nasty 3 hour MRI have to repeat again yearly now with new finding.

My opinion to anyone that is dealing with a finding of possible Subependamoma in 4th ventricle is this. Only have surgery if symptoms or changes occur. If I didn’t start having migraines, episodes of falling, and severe nausea occur, I would not have had the surgery knowing what I know now about the permanent changes I cope with post -op. It turned out they did not see the hydrocephalus on MRI, but during surgery brain fluid was blocked. My surgeon told me he would listen to symptoms more when determining resection of subependamoma vs. MRI in patients to come. I know just like me, you want to get it out as knowing its there is very bothersome especially after they tell you there is a chance it is not benign or a different type of tumor. I say if not having symptoms just get yearly MRIs to see if tumor changes or grows. If symptomatic, hydrocephalus could be an issue and then you have to have it removed as you can die if your brain fluid gets blocked. Please just know, recovery is long! Be prepared for the long road ahead. Also if it were not for acupuncture, I would still be using my walking sticks to balance. I now only have to go every 2-3 months to acupuncture to get my balance stable. It was 2-3 times per week and then declining over the years to get my balance to best it is going to be. I also say if you have to have this surgery, you must be patient, brave, appreciative, and do your best to keep a good positive attitude, as the other option is to not ge here with your loved ones. Once again, if not having bad symptoms, I DO NOT recommend you do this surgery. Your body will tell you and give you annoying signs if hydrocephalus is starting or if the tumor is something else. Most likely it will change shape and grow if malignant. Your choice, your risk to take when trying to decide to have or not have the surgery. Just hope this post gives some more facts about what you will have to deal with. I wish I had this information before ny surgery.

I am willing to answer any questions anyone has. Good luck!

Jump to this post

@lioness31277
Thank you (and everyone else on this thread) for sharing your experience.
I have also just been diagnosed with Ependymoma in 4th ventricle (Female aged 42).
Im based in the UK and waiting for results of MRI with contrast for further information before I can be presented with treatment options. I've been told surgery is most likely, but given what you have shared above I certainly need to ensure I have collected as much information as possible so I can make a in informed decision.

I believe most of you are based in the USA. What types of treatment were you offered (as alternatives to surgery or monitoring growth)?
I do have symptoms which are increasing and the first MRI (3 weeks ago) showed signs of hydrocephalus, so I suspect waiting won't be an option. But I will know more once the results from the second MRI are presented.

I welcome any information / guidance. Ime very grateful you have shared the paper titled; The surgical treatment of tumors of the fourth ventricle: a
single-institution experience (by the Department of Neurosurgery, The University of Texas MD Anderson Cancer Center, Houston, Texas)

Are you aware of / can you share any further papers which summarise patient outcomes from various treatments delivered for Ependymoma in the 4th ventricle?

I hope you are all improving, it sounds so tough, but you are incredibly brave for sharing and I can't express how much I appreciate it.

Colleen Young, Connect Director | @colleenyoung | Nov 25, 2022

In reply to @pma2022 "@lioness31277 Thank you (and everyone else on this thread) for sharing your experience. I have also..." + (show)

Welcome, @pma2022. You're wise to do your research to have an informed discussion with your care team. While we wait for @lioness31277, I'm also tagging @jcorcoran @annrmarie and @beckyziegler on this discussion to bring in more experiences and voices to help address your questions.

In the meantime, here's some info from Mayo Clinic:
- Ependymoma https://www.mayoclinic.org/diseases-conditions/ependymoma/cdc-20350144

This page from the National Cancer Institute (US) also includes active clinical trials
Ependymoma Diagnosis and Treatment https://www.cancer.gov/rare-brain-spine-tumor/tumors/ependymoma

When do you meet with your doctors again to discuss your options, PMA?

pma2022 | @pma2022 | Nov 25, 2022

In reply to @colleenyoung "Welcome, @pma2022. You're wise to do your research to have an informed discussion with your care..." + (show)

Thanks for sharing that information. I will read it all carefully.

lioness31277 | @lioness31277 | Nov 28, 2022

In reply to @pma2022 "@lioness31277 Thank you (and everyone else on this thread) for sharing your experience. I have also..." + (show)

Hi pma2022,

I was not offered any other options other than waiting or surgery. If hydrocephalus shows on your MRI, then I am sure surgery will be offered to you. Unfortunately where the tumor is can block off your brain fluid. This is life threatening so unfortunately you have to decide am I willing to risk my life or deal with what happens after surgery. I obviously chose deal with what happens after surgery. I do not know your working situation, but if you decide to have surgery you may not be able to work for awhile and so you might want to plan for that. I know this really sucks, but I still feel I made the right decision because I appreciate being alive and I have some permanent issues I deal with every day. We all have something. I took the time to tell my brain tumor experience so that people like you are not shocked after surgery when recovery is slow and you think something is wrong because your surgeon did not prepare you for post surgery complications that you will have to deal with. I know this is hard and I was 2 years older than you when I had my surgery. I understand what it feels like to be facing this. You will get through this, but keeping a positive attitude is half the battle.

mp259 | @mp259 | Feb 8, 2023

I am one year post op for an ependymoma in the fourth ventricle. I was told from the beginning that it would be a 12 month recovery. I am doing very well. However, I still have what I call "brain pain." Its hard to describe to anyone who has never experienced it. I wouldn't really classify it as pain. Its not a head ache. It could possibly be described as some pressure or tightness in the head. It is typically worse as the day goes on. It is normally located in the top or sides of the head but the surgery was in the back of the head. Does anyone know what I am talking about? Does anyone have any suggestions or remedies? I apologize if this is not the place to post this. I just came across this web site. Thank you.

Amanda Roe | @amandajro | Feb 11, 2023

In reply to @mp259 "I am one year post op for an ependymoma in the fourth ventricle. I was told..." + (show)

Hello @mp259 and welcome to Mayo Clinic Connect. So often what we are experiencing during our health journey cannot be truly understood by those around us as they aren't going through the same thing. So glad to have you join so you can find others who can relate.

I found a discussion with members who are sharing about ependymoma and wanted to bring you in so you could connect with members who may understand. You can find your post here:
- Ependymoma/subependymoma of the 4th ventricle: https://connect.mayoclinic.org/discussion/ependymomasubependymoma-of-the-4th-ventricle/

Members such as @lioness31277 @pma2022 @jcorcoran @annrmarie and @beckyziegler may be able to come in and share if they can relate.

Has your doctor provided any recommendations?

jasonb37 | @jasonb37 | Mar 17, 2023

Hi, I (40m) was recently diagnosed with either ependymoma or subependymoma on the floor of the fourth ventricle. It is small ( 6mm ) so we are waiting for 3 months for my first Neurosurgeon appointment and next MRI. Just looking for anyone else that might have been through this. I have been having confusion, memory problems,and some gait issues but they don't think it's related cause the tumor isn't pushing on anything. Can a tumor like this cause these types of symptoms even if it's small? I'm so confused....

siragusas | @siragusas | Mar 17, 2023

I just came across this site. Well, I was researching my recent diagnosis of a subpendymoma. In my 4th ventricle. I’m still learning the terminology so forgive me.
I went to my cabin on January 7, 2023. It has really been snowing a lot and to get to my cabin. We have to drive our Argo. It doesn’t have very good suspension so when we got there, my neck was killing me from the drive I discovered that my face was feeling tingly and numb, but not really now I mean I could feel my face, but to the touch my face tingled I guess. I figured I might have whiplash. I went to my primary care physician about two weeks later. I developed vertigo and was having a hard time walking. My gate was off. My stride was bad and I couldn’t walk normally at all I mean it was weird couple days later out of the blue I just threw up it was awful. I haven’t thrown up in years. I did not put two and two together. I went to see my primary care physician. He recommended physical therapy. He didn’t check for an x-ray or do anything else. Right before my physical therapy appointment I decided on my own I was going to take myself to the emergency room because they have everything there at the hospital so if they find something wrong, I can get it all taken care of that one fell swoop, so mediately lied, took my blood pressure And my blood pressure was 216/164 I realized I had forgotten to take my high blood pressure medicine since October. I had no idea so they started focusing more on my high blood pressure then why I actually went in there after all is said and done I started to get a treatment for why I went in. I told the ER Doctor Who was very nice and cared for a change about my symptoms my vertigo, my neck pain, my face tingling there’s a few little symptoms. I can’t remember however, they referred me to the downstairs x-ray, and he decided because I was scaring him with my symptoms to do an MRI of my neck end of my brain, when the MRI came back, there was a Neurosurgeons nurse that was trying to explain to me that I had a brain tumor or what we call a subependymoma. She explained that it was blocking the area where the spinal fluid is supposed to flow down. However, she explained it was not malignant and it was non-emergent and slow growing. Now I had been at the ER for 10 hours they actually transferred me from one hospital to another hospital, which had the ability to perform that MRI after I receive my diagnosis I wanted to go home. The nurse said I should stay that the doctor might perform surgery while I was in during this visit but it was a weekend and however long it’s gonna take to get a doctor neurosurgeon to see me is kind of a joke, so I said, can you just give me his number and I’ll make an appointment so I proceeded to make an appointment and I got in four days later the neurosurgeon explained the subependymoma to me. He also referred me to a neurologist eye doctor to be evaluated for papilledema. I have not had that appointment yet. It is in April.
I have not had vertigo, and I have not thrown up in a month pretty much since that one time I wonder if when I got whiplash that interfered with the brain tumor I don’t know. Maybe it made some of the symptoms come out finally I don’t know.

Now here is some fun information and as I’ve been researching, I’ve run across a lot of weird coincidences. I’m a 55-year-old woman well just about 55. I was diagnosed with Hodgkin’s lymphoma when I was 18. I went through chemotherapy for 11 months and then was on remission. The chemotherapy caused my eyes to go bad as well as needing a lot of cavities. I had Lasik surgery which the 2020 vision I had after that is gone now I’m back to needing contacts, but my eyesight has remained the same for three or four years, I have not had any headaches and I have not been dizzy for about a month. For the past six years, I started developing bronchitis quite often. I get a cold it turned to bronchitis. My doctor would give me antibiotics. I would take three rounds for it to go away, and with it in a month, I had bronchitis again and this was going on for a year and a half until my doctor finally sent me to an immunologist, the immunologist ran blood tests and found that I was deficient in immunoglobulin. I was at 430 when I should’ve been at least 750 to 1600 and he started me on a treatment of immunoglobin replacement therapy. I take 100 of Hizentra. Two times per month subcutaneously or I need a knee replacement I’m a smoker so I really don’t think that’s going to happen because they won’t perform surgery on me till I quit smoking which is not gonna happen. About 10 years ago I got an MRI of my back I have low disc degeneration a slight case of scoliosis and so I have to see a pain doctor every month. I’m on 10 mg of oxycodone four times a day. I’ve recently developed loss of control of my bladder. When my diagnosis came through from the radiologist of my MRI on my back, it scared the radiologist enough to tell me that I needed to go to an oncologist. I saw my MRI and I saw a black spots all over my body. it looks like when I had Hodgkin’s disease it had mastestized throughout my body. The oncologist looked at it and said it’s not new cancer. Apparently it was my old cancer that was showing up on the MRI and boy it was everywhere. I also have lipomas fatty tissue that builds up and he’s like shrimp under my skin I had quite a few removed, in my research of this brain tumor, I noticed some common links between lymph nodes, immune disorders, and a few other things I’ve suffered through. I think I would be the perfect candidate to research on. I should write a book. I’ve had two knee surgeries, elbow surgery in an ectopic pregnancy. I’m just kind of a walking miracle waiting to die.

Amanda Roe | @amandajro | Mar 17, 2023

In reply to @jasonb37 "Hi, I (40m) was recently diagnosed with either ependymoma or subependymoma on the floor of the..." + (show)

Hello @jasonb37 and welcome to Mayo Clinic Connect. I am sorry to learn of your diagnosis but am glad you've joined to connect with others who will understand what you are going through.

You will notice I have moved your post into an existing discussion that you can find here:
- Ependymoma/subependymoma of the 4th ventricle: https://connect.mayoclinic.org/discussion/ependymomasubependymoma-of-the-4th-ventricle/

I did this so you can connect with members such as @lioness31277 @pma2022 @jcorcoran @annrmarie @beckyziegler and new member @siragusas who can share their experiences with you and hopefully give you some clarity.

In addition, here is some information that could be helpful as well:
- Ependymoma: https://www.mayoclinic.org/diseases-conditions/ependymoma/cdc-20350144

What is your treatment plan as of now?

emmadan2020 | @emmadan2020 | Apr 1 3:33am

Hi Everyone,
By luck I have come across this question/answers section. I have been looking for such a long time online and found nothing. I am a 32 year old female with a 4th ventricle brain tumor, I will give you all a little background on my situation. I had an MRI scan approx 1.5 years ago and was told (no significant findings) this was for a separate issue. Then about 6 months later I was having severe migraines ( I have always suffered migraines throughout my life) but these felt different I was violently vomiting & dripping of sweat begging my husband to call for an ambulance. I went to my GP asking for my migraine tablets and my wonderful GP said he wanted to send me for an MRI scan because this didn't sound like a normal migraine. Thank God he did because that's when they found my 4th ventricle brain tumor. They said the scan that was done 6 months prior the one that said no significant findings Atcually had the tumor there but it was so hard to see as it looked like a tiny little vein, anyhow now it's grown ( I can not remember the size) but its still very small.
I also have a left side pineal cyst measureing 15cm which they are not concerned about.
Im under a different hospital and was told in December 2024 that I have to go in for Major surgery they kept me and my husband in a room for over 1.5 hours detailing this surgery and recovery I prepared my children, layed awake every night frightened and worried sick I was told I was on the waiting list then 2 weeks later got a call from my brain surgeon, they mixed me up with another patient and it's not me that needs the surgery!!
Although I was relieved I was also very upset and angry for all the stress caused and lost so much faith in them.
They were scanning me every 3 months and my tumor has stayed stable in the past 2 scans meaning no change in size or shape ( my migraines have calmed down too) so now they want to scan me every 6 months. My next appointment to see my brain surgeon is 15th August 2024 so my scan usually happens a week or so before. I have been told I will defiantly need surgery and my tumor will defiantly grow again it's just a case or watching and waiting. It's like living on a ticking time bomb!
They don't know if this is a supendymoma, ependymoma or a choroid plexus lesion. Although because it's not growing fast they are more thinking a supendymoma but until a biopsy can be done they won't know for sure, and they can not do the surgery while the tumor is this size because it's in a dangerous location near my brain stem.
The reason I was searching online again today was because I was warned to look out for red flag symptoms ( morning severe headaches, vision problems, sickness, problems with balance etc. I was told this is because it could indicate a problem with fluid buildup and pressure, with me needing a stent put in. The past few days I haven't felt great (mild headaches) feeling like I have a hangover, 1 morning of bad sickness and a few days of my right side feeling (achey) like my right leg and right arm feels as though I've been punched. I know I can't be advised medically and I will go hospital if I get any worse but I was more wondering if people can advise if they've had these symptoms and how long did they last?
Also how long after diagnoses was surgery needed? Did anyone's stop and start growing? Any advice would be great please.
Emma

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