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!

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