Ependymoma/subependymoma of the 4th ventricle

Yep.. me a few months after surgery’s

I also had significant left sided facial drop for months after surgery and my left eye was inwardly inverted now looking at my nose... surgery aligned the eyes and the drop has mostly gone.

Hi @annemaree and welcome to Connect. That must be so demoralizing to have such major side effects after the removal of the tumor.

I wanted to introduce you to fellow Connect member @beckyziegler as she also had fourth ventricle surgery and may be able to share her post-surgery experience.

Back to you @annemaree what do your doctor's say at this point, now a year removed from surgery, about these side effects? Are they continuing to treat them in hopes you can get them to a point where they can be livable?

Hi.. I’m replying to a email sent from mayo about my side effects following resection of a tumour on fourth brain ventricle. I’m still navigating this site. After the resection the left side of my face drooped and left eye was turned in ward. I had significant double vision. And I had no balance. These effects came on slowly. There were other smaller effects as well like ringing ears and numb mouth and lack of development of saliva. I had two operation to correct my eyes but had to wait ten plus months before they would operate. Cosmetically the eyes are better but functionally not so. My balance is somewhat better but far from ok. I stu,mble fall and walk with a wide gape. It’s now well over a year since the operation.

The oncologist and neurosurgeon seem to come from different entities. The neurosurgeon says little and kind of intimidates me. He hasn’t really commented on the side effects but at last visit said it’s probably as good as it’s going to yet. The onthomoligist can’t operate again or do more. The operating surgeon has always been the optimist saying you’ll be right in two to three years.

I only see there people for six monthly checks now so not really any follow up. My own doctor does little.

My life has been terrible since. I am single, no kids, have been very active and independent . I worked long hours and often at night in acute mental health.
Th. I cannot drive or work anymore and can’t handle travel. I’m now living on a benefit of 280 nz dollars a week. I own my own home. I have a few friends but that’s the only support I get. Forget family.

Initially I read about these tumours online but the prognosis terrified me. No one has ever told me I’ve on,y so long to live but of course I worry it will grow. Back. Funny my mother used to say when I was a kid that I’d never get cancer as there is none in the family !!

Back to my eyes. I understand it’s complex, damage to the sixth nerve that is complex. Plus nastagmus. Everything keeps on moving and flickering . I can’t get a still image except sometimes at night when I drink wine. ! I also have double vision. So this along with balance is terribly hard. I have tried so hard re my eyes. I wore a patch for a long time but so uncomfortable. I hated it. I tried nuclofen and Gabapentin which did not help. This was after the second eye operation. Then i covered one lens of my glasses with tape. In the last two months I’ve been trying prism glasses but I can’t cope and they make the visual ossioation worse. So next I’m going back to using one eye with contacts but one contact blocked out but made to look like my own iris.

I could go on and on about all this and already have but if anyone wants to contact me pleAse do. I’m afraid I’m not offering any pearls of wisdom. And I’m not going to reread to check this mail as it’s too darn hard.. ,,!,,,

Anne Maree

Ditto... my doctor spent two years Messing about but eventually sent me also to a ENT specialist because of my vertigo. He wrong,y diagnosed migraine associated dysequlibrum. Gave me medications. It’s was on,y after I felt so terrible at work that I rang his surgery to say that none of the medication was helping. He then reffered me for a MRI and the tumour was found.

HI! Thanks annemaree for the post. It is very hard to find anyone with the same issues. I am over 10 months out. I am close to the same with issues. I struggle with balance and eyesight. I was told not to wear the patch if possible, because your brain will make connections it didn't have, to compensate. I was told that you needed at least 18 months to feel better, so don't give up yet. If your surgeon thinks it will improve, then he has seen it. It is so rare, that I have learned that the doctors in my immediate area( pretty small). Have no clue, except what they read, and I can do that too. It isn't their fault but it is hard on one's emotions. We are taught to listen to the Doctor and I have had some bad experiences with that. I have not even gone to the neurological ophthalmologist yet because they have waited to see what happens. It is so hard, I can relate. I also cannot drive. I work because I have help and done it for years, but stress levels are so high. I pray you to see the improvements in your healing, One thing I read was that it is hard to see, but things are going on under the surface we can't see and it seems we are sitting and still when we are not.

Yes... I did and Ive sent in posts.. where are things at now for you .

Hi... I’m having trouble getting around the site. Yes, I had a tumour resection over one year ago... it was a sitting up procedure . The surgeon said, hey you don’t have cancer but I was referred to the cancer society here in New Zealand. The medics do think there may be some residue tumour but cannot be certain. I had symptoms for a long time before hand which over the years became worse. Initially I was wrongly diagnosed by an ENT specialist but later a scan picked up the tumour. It was about row diameters. I had been troubled beforehand with generally feeling always unwell, nausea and dry retching vertigo taste changes and later in spots in front of my eyes. It’s been horrific as now pretty disabled and trying to cope

Hello, Things are about the same. I am waiting for my year appt in about 6 weeks. I have been working since the end of Thanksgiving. I still have balance issues and vision problems. I am not where I was, and improvement is so slow. I rely on my classroom aide for a lot. I am believing for recovery and look forward to it.

@annemaree you might find these tips helpful for getting around the site:
- Getting Started on Connect https://connect.mayoclinic.org/get-started-on-connect/

If you have specific questions about how things work or setting your preferences, etc., feel free to send me a message through the contact form: https://connect.mayoclinic.org/contact-a-community-moderator/