Ependymoma/subependymoma of the 4th ventricle

I wanted to cut and paste you part of my neurosurgeons report that I hot today but it was a PDF.... he quoted a recent USA study where around 78 percent of patients with a removed or de bulked 4th ventricle tumour suffered significant neurological damage too... the eyes and balsnce...

Ill look for that study. Was it permanent?

Hey I want to say....hey, I'm getting better..you woll too ss the brain compensates...but it needs patiemce

I'll try get around to looking st the study's publisher...which is a footnote on his report

Fergeson,Levine, suki and there are others, the surgical treatment of tumors of the fourth ventricle. Journal , a single-institution experience.journsl of neurosurgery
, 2018 Feb 1

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I'm so glad that you and @beckyziegler have connected here. Becky, here is a link to the study that AnnMarie refers to:

The surgical treatment of tumors of the fourth ventricle: a single-institution experience by Ferguson et al., published in the Journal of Neurosurgery. 2018 https://thejns.org/view/journals/j-neurosurg/128/2/article-p339.xml

Thanks!

@annrmarie and @beckyziegler. First off I want to say my heart and prayers go out to both of you and I want to thank you for sharing. I can only imagine what you are going thru and I hope if my only option in the future is surgery, I deal with it with same strength you have. I had my appointment and both my Neurologist and Neurosurgeon said I should wait 3 months and do anther MRI to check growth. With that being said, my Neurosurgeon also said if it was totally freaking me out and I wanted it out of my head, he would take it out. He said risk of complications was 5-10%. I left there somewhat numb as to what I should do. I have great insurance now which was how I got to be seen at the Mayo but no one know what the future holds. I was hoping to retire in a few more years but I don't know if I should/can with this in my head. I was so worried what MRI in 3 months would show and wished the 3 months would just be done. It then occurred to me that I had several older MRIs of my upper neck from a spinal fusion plate surgery. The plate is at adams apple level and the tumor is pretty low in the brain. I wondered if the MRI had overshoot and possibly showed the tumor. I grabbed the disk I had from 2014 and although I am not a brain surgeon, I thought it showed. I then got a hold of my MRIs from 2005 and 2009 and I thought they also showed them so I sent them to the Mayo. Both the Neurologist and Neurosurgeon complimented me for thinking of this as they both agree the tumor was visible on all MRIs. They also could not believe it was missed in 05 as it was pretty clear. I am actually very glad they missed it as it gave me 14 years that I did not have to worry about it. They said since the 05 MRI was for my neck, the image of the tumor was not as good as they would have liked but it allowed them to estimate it has grown maybe 25% in 14 years. They now want me to come back in 9 months to get a better image and verify their growth estimate. This is obviously a very big relief for me. I still am not sure what the future holds but for now, it looks a little brighter. Your strength is my inspiration and I am very thankful you have shared your stories. I will continue to monitor this sight and hope you keep posting your progress. I will also keep both of you in my heart and prayers.

I thank you so much for your prayers. It is good to see someone advocate for themselves because I know they can only do what they think with the information they have. I have to agree with them, I'd wait. My surgeon said what I had was slow growing and there is no telling how long it was there. I will continue to pray for you as well. Thanks again.

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!