Adult w/ ependymoma

AnnieCatBlue

I was diagnosed at age 51 with a brain tumor in 2019 and had it removed in October of 2022. It never really gave me any major problems until about 12 months before surgery. I began having minor dizzy spells and double vision, only when I looked left. My surgeon removed all of it. I had 6 weeks of radiation. My issues now are double vision and pretty bad balance. I've done PT and OT for several months and both improved somewhat, then just kinda stopped. I still do the exercises but am not seeing any more improvement. My vision is what I'm mostly concerned about. Seeing two of everything is just worst thing ever. And I hate wearing a patch. My surgeon says it might never get better, my radiologist says it could take up to 2 years, my eye specialist says it's too severe for special lenses. Has anyone experienced anything like this, and if so, is there light at the end of the tunnel?

ES_123

Hi Annie, I don't ever post but just read. I was diagnosed with brain cancer at age 22, back in 2009. I'm now 35 I have balance issues and double vision as well. I am in a wheelchair because of that. As far as balance it might be as good as it will get, I get it that it's hard to take that news. But every cancer is different, so what do I know.

My double vision was annoying, but mine doesn't sound as severe as yours. Eye patch is very annoying, you lose all of your peripheral vision in that one eye. I was using a bandana for a few years, it helped alot. I would fold like you normally would but leave the end corner unfolded. With the small end corner of the partially covering part of one eye. It helped for me.

I attached a basic picture of what I am talking about.

b.jpeg

AnnieCatBlue

https://csn.cancer.org/discussion/comment/1705875#Comment_1705875

Thanks so much for the response! I was using a wheelchair right after surgery. I went to inpatient rehab for 2 weeks. I was sent home with a walker. Eventually I graduated to a cane. Now I can fairly well manage on my own, I just look like I'm walking drunk. Lol

The bandana is an idea I hadn't thought of. Way cooler than a patch and it beats winking all the time. With your double vision, are the images side by side or diagonal (or staggered is what the drs call it) of each other? Mine's diagonal which has thrown off my depth perception.

ES_123

Sounds like you're doing ok with your balance. I walk with a walker on my own too but am unable to hold anything while I do it, so I can't help out around the house. I guess I'm part time in a wheelchair and part time using a walker.

I also have diagonal double vision, but don't think my depth perception is off. Probably a good thing I can't drive anymore. LOL. I didn't like glasses so that was when I got the idea about the bandana. I did eventually get glasses though.

AnnieCatBlue

I'm doing kinda ok with my balance. At home I'm good. It's familiar so I do ok. It's other places I suck at. I can't maneuver through crowds well at all. Steps are difficult. I just got back from one of the kids basketball games. My daughter has to help me up and down the bleachers. Not to mention, instead of 10 kids running up and down the court, I see 20! Lol I literally wink my left eye the entire game so I can see the right amount of kids.

I can surgically fix my bad eye eventually if it doesn't correct itself, according to the eye specialist. My neurosurgeon said that's not an option until at least 18-24 months out. He wants me to be "patient with my recovery process." Easy for him to say. He only sees one of everything!