View Full Version : 101 days and a miracle happened

09-23-2016, 08:53 PM
June 14, 2016 my life changed forever and I knew it would. I remember brightly chatting with the intake nurse and warning another nurse my veins totally disappear when I am nervous. I was preparing for the largest, most invasive and potentially dangerous surgery a normally healthy person could endure. My spine was going to exposed, drilled into, cranked straight. Muscles and nerves cut. I was petrified of so many "what ifs", I knew no one could guarantee me it would be all fine. I actually looked forward to waking up afterwards and just focusing on recovering. We all prayed before I was wheeled into the ER.

My veins proved to be an issue and I had a huge catheter in my neck when I woke up, a central line necessary. I was very disoriented the first night in the ICU, thinking the nurse had told me to stop pushing the PCU button and I was crying out for help. That got resolved easily. The part that initially was not really noticed was that I couldn't open both of my eyes at the same time. I could open one, but had to keep the other squinted shut. I can't even remember what day it was that my surgeon came to visit and called for a neurologist and opthamologist. A brain MRI was suggested. I begged no, I was in such extreme pain at that point, I couldn't imagine doing anything. I had this same weird vision problem with two prior surgeries in the last 2 years, but it always went away after a few hours. The doctors had no idea what was wrong.

Everything was 15 times harder with my vision problem. The eye I could see out of was blurry at times. It was very hard to move around anyway and I couldn't navigate around without feeling unstable. The days and weeks to follow were the hardest days of my life. I could not even get out of the house to see a neuro-opthamologist until 6 weeks post-op. I was told my case had never been seen or heard of. I had no diagnosis because I didn't have all of the symptoms of anything. The closest diagnosis was a cranial nerve 3 injury. I had a permanent lazy eye that looked outward and double vision. I cried so much the first 2 months, fearing a potential eye surgery that might not work or would leave it worse.

I can not possibly describe how completely awful it is to have something wrong with your vision. Every waking moment I struggled to understand what I was seeing. Reading burned, I couldn't tell how far down steps went, and I was always bumping into things. I didn't feel like seeing friends or even leaving the safety of my house. My eye looked totally freakish and I either had a patch on or wore my bangs over my bad eye. At one point I realized I would never take a picture of myself again. At 11 weeks, I started driving. It is legal to drive with one eye but hard as hell. I would grip the steering wheel and basically not change lanes unless absolutely necessary. I felt like I would never feel like myself again.

101 days pass. Yesterday. I am putting on mascara at 6:30 in the morning, an arduous task with double vision. Focusing on the mirror, looking down, up, I look up in the mirror with my head down and I felt this weird sensation of my pupil moving. POP. It moved into place. I froze, hardly believing I had two eyes looking at me in mirror, not one looking off to the side. That moment in your life where everything changes was that moment. My double vision instantly left and besides some eye fatigue at the end of the day, I am healed!!! A miracle! The doctor had said his best guess was that my vision would recover within 6 months, but he wasn't sure because I was the first case of the kind. I ironically see him again Monday (scheduled a month ago) and I have a million questions.

I have felt tremendous support from this site. My back recovery was just so much more complicated thinking my vision was permanently ruined. I absolute can not believe this happened. The body is so complex and healing is possible in ways we can not imagine. I feel like my normal self again and I wanted to share my good news with you all!!

Now I am a "smiley face" instead of a ;/


09-23-2016, 09:33 PM
WOOHOO! So glad to hear this! Congratulations.

09-23-2016, 09:54 PM

I knew this post was coming.... (smiley face)



09-23-2016, 10:03 PM
I'm so happy for you, Jana! Congratulations! There are days when we feel like yelling "life is so good!"


09-23-2016, 10:09 PM
Wonderful ! Thank God!

09-23-2016, 10:52 PM
Hi there.

I am very happy for you!

I just wanted to mention that there are syndromes that include both scoliosis and lens dislocation. Marfans is one of them. Homocystinurea is another.

This is the third time you had an issue after surgery. I don't think the lens dislocations associated with Marfans present that way but you may want to rule out Marfans because of the issue of aortic dissection. It is completely avoidable yet is the reason people with Marfans sometimes don't live a normal life span. That's why I feel compelled to mention it even though it is unlikely you have it.

And while a majority of Marfans patients have lens dislocations as far as I know, I have no idea if the majority of lens dislocations are associated with Marfans. Probably not.

Once again, I am so happy for your spontaneous lens relocation!

green m&m
09-25-2016, 10:43 PM
!!! That's awesome!

I'm so happy for you *happy dance*

10-04-2016, 12:07 PM

Such wonderful news!!! I am so happy for you and glad that your vision is back to normal. The body is a miraculous thing, isn't it?