From Blindness to Brain Surgery: Lessons from my Mom's Tumor
it’s time
The doctor said, “When it’s time to get the cataracts removed, you’ll know it.” And in July of 2022, she knew it. Her vision was compromised and she had her left cataract removed. She was terrified. Since my childhood, I’ve known my mom is paranoid of losing her eyesight. She would always tell me how she read Hellen Keller as a kid and thought, I’d rather die than be blind. “I never take it for granted, I thank God everyday I can see,” she told me over and over. And much to my ongoing frustration —the one and only doctor she was ever diligent about going to was in fact, the eye doctor.
Everyone sought to encourage her, my father in law saying, “Oh, it’ll be great. You’ll wake up the day after surgery and you’ll see crystal clear!”
Except, she didn’t.
A few weeks post-op, I had been researching and told her to ask about a POC (secondary cataract that can occur post surgery) and turns out, she had one. Problem solved! It was removed — but still no improvement with her vision. We all chalked it up to needing more time to heal and so she postponed having the right eye done.
Nine months later, going blind
Fast forward nine months to March of 2023, my mom sat me down and said, “I need to update you on my eyes.” Immediately, I felt that pit in my stomach where you know you’re about to hear horrible news. “My eyes never got any better, and now they’re actually quite bad. I have a white haze over both eyes, they’re blurry, I’ve lost peripheral vision completely on the left eye, and the right eye still has a cataract.”
My heart sank.
I had noticed my mom had been kind of strange. Distant. Sad. My husband saw her trip over something in plain sight after he had pointed it out to her, and we just thought it was the second cataract needing to be removed. “I didn’t want to tell you because you’ll just worry and I have no answers. I’ve seen three retina specialists who all say my retina is fine. It’s not the glaucoma or AMD causing it,” she added.
She has always been a silent sufferer. I was furious, of course, because had she told me earlier, I would have reached out to everyone I knew to get possible answers or avenues to pursue. Little did she know, two weeks later we would be hit by a tornado so stress was coming for us one way or another.
Turns out, my mom’s eye doctor had been telling her to come back every four months since surgery, only to say “everything looks fine” and I have no answers as to why you can’t see. After their last appointment, he walked up to her in the hall with a pitiful stare and just said, “I’m so sorry.”
Despite him having no clue what could be wrong, he sent her to three different retina specialists until finally, she was referred to a cornea specialist who told her she need to see Neuro-Opthalmology. Burnt out and discouraged, I could tell she wasn’t wanting to do this.
After digesting the information I said, “Mom, remember when our dog went blind? And it ended up being inflammation from an infection around her optic nerve? Well, we caught it before it did permanent damage… so maybe this is something that can be fixed and time is of the essence.”
I honestly had no clue what this could be, but I was just trying to push her to get that appointment. And for some reason, I just couldn’t stop thinking about my dog.
MOthers Day meltdown
I hosted everyone at my house for Mother’s Day, knowing my dad was getting hip surgery the following week. After everyone left, I was clearing dishes from the dining room and I fell to the floor. Watching my mom’s personality fade away, seeing her shuffle around and grab on to people for stability, holding a magnifying glass to her one eye just to read anything. Witnessing her worst fear becoming reality— it was devastating. I prayed for a long time, begging God that whatever was going on with her, there would be a solution. A way to regain eyesight? This seemed such a far-fetched request, knowing she had been losing vision for almost two years.
A blunt appointment
Her appt was two weeks after my dad’s surgery, and I went with. The Neuro-Opthalmologist did lots of tests that confirmed just how bad her sight had gotten. Almost no peripheral vision in left eye, and now some loss in the right. My mom still couldn’t explain the white haze, but described it like looking through cellophane on a foggy day. No depth perception. Colorblind. When she looked at her optic nerve, the doctor saw damage to both eyes.
“Well, with the extent of damage, I would assume possible brain tumor,” the doctor bluntly said, which I both appreciated and hated.
My eyes turned toward my mom, sitting in the exam chair with her short legs dangling, and it was as if all the blood had drained from her already hopeless body in an instant.
Brain tumor? We were thinking at the very worst: stroke.
Fighting back the tears, my mom just nodded and we were sent on our way with instructions for an MRI. All the way home, I was reassured her there’s just no way — it’s obviously a stroke. “We’ll do some rehab, I bet you can get your eyesight back,” I said, lying even to myself.
bad news
It took three weeks for my mom to get into an MRI. The day before my birthday, I got a call at 9am. “So, we got the results….and… your mom… has a brain tumor,” my dad said in his best trying-to-hold-it-together voice.
I responded wtih my best trying-to-hold-it-together pep talk, hung up, and cried in my car that was still idling in the driveway. I immediately went into research mode about Meningiomas compressing optic nerves. My mom is 76, I thought, there’s no way she can have her head cracked open.
But less than a month later, that’s exactly what happened.
After consulting with one of the best Neurosurgeons in the country, my mom had a full on, 10-hour craniotomy. Possible outcomes: immediate blindness, death, any number of other neurological complications…. or, if all went absolutely perfectly, she could eventually regain some eyesight.
Wait. Regain eyesight?
Although this seemed to be the worst possible scenario available, it was the only one involving… a solution. Exactly what I had prayed for. And what many of you prayed for as well. As I was unraveling this information on Instagram I had HUNDREDS of people asking for my parent’s address so they could send my mom well wishes and prayers. It was unbelievable. Before, during, and post op my mom was getting cards everyday from all over the country — and even world.
I’ll never forget that act of kindness and what it meant to us.
waiting game
I’m certain if they told you what to expect after brain surgery, no one would do it.
The night before surgery, we were all in my mom’s hotel room downtown Chicago. I washed her hair with the sanitizing soap, and she laid on the edge of the bed, while I dried her hair and her heart beat a thousand miles a minute. You can’t help but think this could be the last time I talk to my mom. You don’t want to act like that though because you want them to believe they’re absolutely making it.
But the truth is, it’s impossible not to have doubts when you’re sending a 76 year old into one of the most complicated surgeries that exists. To say my mom was scared out of her mind would be the understatement of the century. My mom hadn’t even had labs done for 35 years. She despises hospitals and doctors.
But the only thing she was more scared of: going blind. And without brain surgery, that was a certainty.
Over 10 hours, and my mom was finally out. The surgeon felt good about the way it went, but described her tumor as a 9 out of 10 in terms of difficulty. Sticky, fibrous and wrapped around all her blood vessels and nerves. He felt confident he got it all except a small piece in the nasal cavity that wasn’t worth the risk.
POST OP
You go immediately from relief that they survived the surgery to dread and worry that they will have complications or infection. That night, we did see her as she was still very groggy and in much pain — she was whispering very profound statements. “I just want to use my eyes for Jesus and help these kids (in their tutoring club).” “I kept praying for God to remove this storm… but then I realized he wanted to walk through it with me.” “I feel bad I wasn’t stronger… this really took me down mentally. Your dad has been through alot.” “I wonder if I’ll be able to see the Christmas lights this year.”
She had told me, a few months prior, that when my dad put up her favorite ultra blue Christmas lights that year, they looked gray. She tried hard to pull it together and host Christmas— and she did, but admitted it was very hard. “Every day I woke up and my world was a little bit dimmer and no one knew why. You can’t imagine the stress I’ve had the last two years.”
The next day was brutal.
I’ve never seen so many things hooked up to someone. A drain coming out of her skull. Compression on her legs. At least 10 wires and IVs. Blood pressure cuff going off every 5 minutes. Her entire head and neck wrapped with gauze. A catheter. A ventilator that stuck to her face like a magnet. And when that someone is claustrophobic, this is really not great. She was on the verge of a panic attack when I pulled back the hot, humid ventilator and rubbed her face down with a cold rag saying, “this is to give your eyes the best chance of recovery.”
After five days in the ICU, my mom was transferred to home with a list of medications. She had gone from irritated and strange (the post op detox is wild) to upbeat and optimistic.
aftercare disaster
They don’t tell you what to expect. Periodt.
When my parents called after being dischaged, my mom was talking a mile a minute. She was upbeat, positive, and ready to heal and take her life back. I remember breathing the biggest sigh of relief thinking I could finally sleep at night without anticipating an emergency call.
Five days later, we had to call 911 because she was incoherent and delirious. After eight hours in the ER, we discovered dangerously low sodium levels, in combination with a UTI (which apparently in the elderly can cause delirium).
I’d later discover that both the drugs she was put on increase chances of low sodium and UTI — plus she had a catheter in the ICU — and no one told us to watch for any warning signs. They didn’t tell us anything, in fact, other than to alert them to any “drastic mental changes.” My dad was in communication with Northwestern all week, telling them she was slowly declining, couldn’t eliminate her bowels (which causes drugs to accumulate), increasingly irritated, no appetite, and not herself. They kept saying, it was just normal post surgery stuff. But finally, on the fifth day of that, my mom didn’t know who a friend of 25 years was and my dad called 911. Thank God he did. She was basically unconscious by the time they got there.
She spent another 5 days in critical care, until it was determined she could maintain proper sodium levels and her blood culture revealed she didn’t have widespread infection.
But, when she was finally on the upswing, she started looking up at the ceiling saying, “Do you guys see that? It looks like little orange squares of wallpaper with designs.” My first thought was oh boy, now she’s hallucinating. But my next thought was wait, she can’t see colors? Is something happening? And sure enough, the surgeon said that was her optic nerve coming back to life.
This ordeal was unnecessary and honestly set her back more than her surgery. She was really unwell, unstable, and so weak she couldn’t even bathe. Very unfortunate.
6 months post op
The hope and prayer was that after removing the tumor compressing the optic nerves, they could heal and return to their normal shape, which would result in vision improvement. With these types of tumors, the less vision loss, the great chance of recovery. My mom’s loss was extensive given she was disregarded by doctors for so long. We weren’t expecting much other than to stop the progression.
mom reading cards from internet strangers
After an MRI, a Neuro-Opthalmology follow up, and meeting with her surgeon, we learned the following:
my mom has made progress on her eye tests: she can see more color, her visual field has improved (but still much loss in left eye), and her acuity improved a bit. Her imaging showed all tumor was removed, and the minor spot in her nasal cavity isn’t growing. She can expect some improvement up to a year, although most happens in first three months. She can remove the other cataract in a few months, which will help alot.
post op, making her list of eye supplements to take
Tips and Takeaways
if you’re experiencing issues with your eyes that can’t be diagnosed, you ask for more and more specialists and if your doctor doesn’t cooperate, you fire them.
realize that brain tumor, especially Meningiomas, can be the cause of many mysterious issues from hearing and vision loss to hormone disfunction (if impacting the pituitary) and the sooner you rule that out, the less damage you’ll incur.
brain surgery is one of the most intense things one could experience and who you choose matters. Highly recommend Northwestern as they have some of the most skilled in the country. I don’t believe we would have had the same result with most other surgeons.
if anyone you know is headed for brain surgery, they need help. they need people at the hospital 24/7 to keep track of whats happening and they need help afterwards. And likely, not their spouse as they will already be so frazzled. They will be weak, still under affects of anesthesia, at risk of falling, and needing help with managing medications. My mom couldn’t remember what I told her 30 seconds afterward.
if you receive a catheter at the hospital, please have them test for UTI before leaving. If not, test at home daily for a few weeks so you can catch the infection immediately.
read every single that that accompanies your medications and ask the nurses before you leave what to watch out for. Surgery in an of itself can deplete sodium, and in combination with certain meds can have detrimental effects.
take the laxatives post op and daily for 1-2 weeks after discharge as its so important to detox the meds and anesthesia but the bowels will be stuck.
take electrolytes daily, the body will be depleted and this might also prevent the sodium drop.
call 911 immediately if something doesn’t seem right. By the time you get them to the car, they might fall or something worse. They could pass out on route to the hospital and you won’t know what to do.
don’t get frustrated. It can take up to a YEAR for someone to recover fully from brain surgery. They are still detoxing, their brain is rewiring, and they have experienced a major trauma. Like, major. For awhile, I was truly concerned my mom developed dementia in the weeks after. She was constantly emotional. It was wild. Have grace. Don’t panic.
lastly
Prayer works, thank you. We truly felt all the love and support — and believe that my mom’s journey from a successful, highly complicated brain surgery at 76 with recovery of eyesight— is nothing short of miraculous.
