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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.

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Colleen Young, Connect Director | @colleenyoung | Apr 5, 2024
In reply to @emmadan2020 "Hi Everyone, By luck I have come across this question/answers section. I have been looking for..." + (show)
Profile picture for emmadan2020 @emmadan2020

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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@emmadan2020, it sounds like you have unanswered questions that may benefit from getting a second opinion. Have you considered getting a second opinion?

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cirodam | @cirodam | May 10, 2025

Hi, I'm from Italy, 37 male.
On october 2024 I have been diagnosed with a subependymoma under the 4th ventricle, between the bulb and cerebellum, measuring 15 mm x 10. I had been experiencing for about 6 months mental confusion, short-term memory problems, difficulty speaking, understanding, and finding words, buzzing and ringing sounds, and pain behind the neck. After 3 months, the findings remained the same, but the symptoms worsened, and I started suffering from mental and physical fatigue, forcing me to sleep every 3-4 hours by taking naps. Surgery was highly discouraged (2 different opinions) and there is no other applicable therapy. In September (next follow-up with MRI), I will seek a third opinion, hoping that the symptoms stabilize, allowing me to live an acceptable life.

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cirodam | @cirodam | Jun 27 8:00am

Good morning,
I'm updating my condition so it can help someone. In the meantime, I've undergone other tests, in addition to the MRI, where the findings remained stable.

For the sake of completeness, the finding occurred because I had two vagal seizures, one in May 2023 and the other in March 2024, after which my condition worsened each time without recovery.

In February of this year, I took a TILT test, which was positive for vasovagal syndrome. Therefore, I was referred to the LONG COVID clinic in Rome, because apparently my entire clinical condition is directly linked to my positive COVID test, which occurred in 2022 shortly after receiving the first dose of the Moderna vaccine. In addition, I also developed fibromyalgia syndrome, which was diagnosed recently.

I would like to point out that the finding rests on structures corresponding to the location of the nuclei of two key cranial nerves: the hypoglossal nucleus (controls the tongue) and the dorsal vagus nucleus (involved in autonomic control of the heart, blood pressure, respiration, and the digestive system).

However, without MRI scans prior to the vagal seizures, it is not possible to determine whether the subependymoma was formed following the COVID infection (studies have shown inflammation affecting the encephalon and brainstem) or was already present beforehand. However, the randomness of its location, combined with the dysautonomias associated with that exact location, is, in my opinion, impossible.

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