I know this is a long post but before my surgery i would read and reread and reread so many of the same post surgical posts to bring me some sort of comfort and I wanted to add an in depth one for anyone else who might find it helpful. my double vision experience also seems to be a rarity.
i am 32 and was diagnosed on july 31st with 2.5cmx3.5cm AN on my left side with brainstem compression after tinnitus and significant hearing loss in my left ear lead to an mri. I am in Louisville, Ky. the following week was ANA awareness week and i gathered as much information as possible. I am now three weeks post op.
i was truly so scared before surgery and i am so thankful my tumor was FULLY removed by the wonderful team at UCSD. some days leading up i would feel guilty for making my family travel all the way out to san diego, spending the money, putting my dogs in kennels for 17 days, and things like that (not that anyone in my family made me feel this in any way - there are just so many emotions involved leading up to surgery and this is one i felt) but i am so grateful i had the opportunity to have this team at my disposal and know i made the absolute right decision. I wrote about my decision making in another post.
i also made a post about some of my pre surgery experience with local and ucsd surgeons in treatment options
I had my 8 hour translab surgery on thursday oct 26th at UCSD, and was moved out of icu mid day on friday. they called my husband at each new step throughout surgery to keep him updated. when i woke up from surgery i immediately felt like my body was turned sideways and that I was going to fall out of the bed, although everyone kept ensuring me i was sitting upright. this did not last long, but was jarring and uncomfortable. I was also experiencing double vision - the surgeons told us that they were able to remove the entire tumor, but that it was particularly sticky, and had attached to the 6th cranial nerve which is responsible for eye movement. i really feel that if these surgeons found it sticky, the surgeons back home (louisville, ky) would have been at a major loss. They gave me an eye patch to cover one eye at a time so I didnt have to suffer through the double vision 24/7. zero facial weakness though!!
The team checked on me all night in the icu and the next day I did not feel like breakfast, but by the time lunch came I did eat a little. After lunch, PT came in for my first walk and eye exercises. I was about to have my husband help me put on my socks but the PT team said "i was an independent woman before surgery and still am" and encouraged me to do tasks like that on my own. My balance was not off, but I got nauseous for the first time during the walk, and the PT held an alcohol pad under my nose for a quick second to help and it went away. We then did eye exercises meant for balance, but I was still experiencing double vision. My left iris seemed to be very weak, it could not perform all up and down and sideways movements and also sat in a different position than my right iris. i guess you can picture almost like a "lazy eye". Quickly after these exercises i got nauseous again and I threw up which is always unpleasant and im glad it was the only time. Was able to eat a small dinner that evening as well. I definitely had trouble sleeping in the hospital not only because of the steroids but the uncomfortability of being hooked up to machines and what not.
The double vision was checked in hospital by an ophthalmologist who could not find any particular damage, and the CT scans and MRI also showed no signs of damage. As different people of the surgical team would come in to check on me they would tell me the double vision should subside as swelling lessens but that they also do not see this happen often, so seemed a bit baffled. They told me to try and keep the eye patch off as often as possible if the double vision wasnt causing headaches, which it wasn't. They set me up with a second ophthalmologist appointment for the same day that all my other post surgery appointments would be.
On Saturday PT came by again and i had no nausea this time. Sunday morning came and I was told I would be released that day. I moved to the La Jolla Family house by uber and my husband helped me take my first shower. Sleep was rough out of the hospital as well as I would wake up unable to go back to sleep and completely starving; my appetite on the steroids was now ravenous. Sunday was also my last dose of oxycontin (they sent plenty home with me but I only ended up needing tylenol each day). On monday my husband and I went on a 2 mile walk around the area with and without eye patch on, and i took a shower on my own with my husband near by in case I needed help.
Tuesday we moved to an airbnb in mission beach while we waited for post op appts the following monday and the area was fantastic for walking. We would walk every day and get plenty of rest. I was feeling decent but the double vision would worry me from time to time as I wasn't seeing improvement. I had to dig deep to not get discouraged and remind myself it had not been that long at all and I needed to be patient. My husband would help me "stretch" my left eye by doing different exercises. When I looked in the mirror my left eye was still sitting in a completely different spot than normal and it was still struggling with full range of motion. Thursday, a week after surgery, I definitely felt fine enough to make myself breakfast and help my husband make dinner. I love cooking so this was a big win, and on Friday I made us dinner on my own.
Monday came and I started to notice my double vision was not apparent when looking down anymore, but was still there when looking up. Yay some improvement! I first saw the ophthalmologist that day who seemed a little surprised that my double vision was still affecting me as she thought the swelling would have gone down more by then. However, she said that she still felt it would continue to improve over time and did not want to get me set up with prism glasses because she felt the prescription would change too frequently. Recommended another month before seeing an eye dr back home for prisms. PT appointment went well - no need for follow up PT back home as my balance had not changed at all from before surgery. Stitches removed. After all my appointments, my husband and I hiked a "moderate/difficult" level trail - with plenty of help from him, great hiking shoes, and also stopping before a rope was needed to go any further. I felt so accomplished and couldn't believe I had brain surgery 11 days prior!
I have been home now for a little over a week and adjusting fine. I am still making sure to give myself plenty of rest when I need it and have not overdone it with any physical or social activities. A couple days after returning home my sister came to visit for about an hour and I was super worn out after - it was the first time since surgery that I had talked back and forth consistently with someone for that long.
3 weeks post surgery and I am still experiencing slight double vision for certain distances, maybe 10 feet out, or if i swivel my head quickly it takes a second to focus, but there has been huge huge improvement the past few days alone, even from yesterday to today, and I have a feeling by week 4 it will be almost or at 100% back to normal. The improvement has been a big relief! I am excited to hit week 4 and slowly get back into some of the activities I enjoyed before surgery, and once my double vision is gone I will be cleared to drive again.
I know every experience is different, and some will have better and some will have worse than mine but i want to thank everyone who has shared on here. I am also aware not everyone has the opportunity to go to experienced surgeons and i am beyond grateful i was able to.
