Special Feature: ‘I Knew It Was A Gamble’: 3News' Monica Robins Opens Up About Unexpected Outcome Of Rare Brain Surgery

By Frank Macek

After becoming just the second person to undergo a groundbreaking implant operation at the Cleveland Clinic, 3News Senior Health Correspondent Monica Robins is now discovering a new sense of purpose in her healing journey. This innovative procedure—designed to restore critical function and vastly improve quality of life—marked a monumental step for both Monica and the medical community. Her story is one of courage, resilience, and the remarkable impact of cutting-edge medicine. 

As Monica shares her experiences, she underscores the blend of hope and determination that carried her through recovery, and she reflects on the profound gratitude she feels toward the surgical team, her loved ones, and the supportive caregivers at Cleveland Clinic. In opening up about the highs and lows of her rehabilitation, Monica shines a powerful light on the emotional and physical complexities of recovery—and on the transformative promise of medical innovation. 

Her journey reminds us all why pushing the boundaries of what's possible in healthcare matters. The following is her journey in her own words we wanted to share with you.

By Monica Robins
Republished from wkyc.com

On April 9, I went into surgery expecting to receive a polymer implant that would replace bone around my left eye socket that previous surgeries had to remove.

I would be the second post-operative patient to receive this implant. The goal of it was to reduce all the side effects that I encountered over the last six years since my July 2, 2019 diagnosis.

It's a research project being done at Cleveland Clinic and I'm fortunate enough that I live here and qualified as a candidate. After my second surgery, radiation was likely the next option for me if the tumor continued to grow. I never thought another surgery would be in my future.  But I also never thought a surgery like this would ever be a reality that could potentially save my eye.

My previous surgeries removed so much bone around my eye socket, my brain is literally pushing my eye out of my head.  It's causing a host of painful, annoying and uncomfortable side effects that I just expected to live with for the rest of my life.  

To find out an implant might be able to not only replace the bone, but may also alleviate those side effects was simply incredible. I knew this was a research project, but I also knew what my future held, so having the chance the try it was a gamble I was willing to take. 

Originally my surgery was scheduled for February 26. I signed off at work on the 20th and earlier that week I developed a cold. It didn't seem out of the ordinary, but I hoped I would be well enough that it wouldn't impact my surgery. It didn't because ironically my surgery would be postponed.  

I'll come back to that cold in just a bit. 

I came back to work for the month of March and left again just before my surgery on April 9. As usual, two weeks before surgery I had to stop taking all of my medications and supplements. What was very strange was in the weeks leading up to surgery, I started gaining a very unusual amount of water weight.  

This could have been from several causes: hormonal changes, particularly fluctuations in estrogen and progesterone that can lead to fluid retention; stress and anxiety, which elevate cortisol levels and increase salt and water retention; or early signs of kidney or liver impairment. The stress, anxiety, and hormonal changes could have easily played a role, or it might have been an immune system-related cause.

One doctor thought that cold I had was actually COVID-19 and maybe I had a cytokine storm. A cytokine storm causes the immune system to go into overdrive and leads to a state of systemic hyperinflammation that can cause damage to various organs including kidneys and liver. My blood work before surgery did show slight impairment of kidney and liver function, but nothing significant enough to prevent surgery. 

However, water retention can also be a symptom of a cytokine storm.

Regardless, that water impacted the future of my surgery. When my Cleveland Clinic neurosurgeon, Pablo Recinos, MD, opened up my skull to begin placing the polymer implant, he realized quickly that it wouldn't be possible.  

My brain was full of water - likely hydrocephalus, which isn't unusual for brain tumor patients like myself. The scar tissue from previous surgeries was so intense that the implant wouldn't fit. 

Dr. Recinos and the surgical team had to figure out a plan B and instead put titanium mesh over my eye, hoping that would prevent my brain from pushing my eye out. During my last surgery, in which they went in through my eye with the TONES procedure, they weren't able to protect my eye with the titanium mesh. The fact that they went in this time during a craniotomy at least gave them this ability.  

They also gave me a bit of polymer. The section of my skull that they remove to get into my head had one corner removed and replaced with polymer and reattached with titanium to keep it in place. So it may not be inside my head, but it is on the outside of my skull.  

Going into this research project, I knew there was a very good chance it might not work for me. But I didn't realize the problems I might have coming out of surgery.

Typically, it's normal to lose weight after surgery because it's difficult for me to eat solid food. But this time, the water weight only got worse, which was far more concerning. That's when I learned my blood work revealed my kidney and liver function was getting worse.

After surgery, I was given a lot of medication that I really wasn't used to, and I knew I couldn't take medication to fix my organ function issues. I had to address this with diet. Initially I thought a Keto diet would be a good place to start, until my doctors pointed out that my kidneys were already stressed, and Keto is making them work harder. So we switched to a clean eating program.

I stopped eating all inflammatory foods and eliminated red meat - no more four-legged animals. Now I eat only poultry, fish, beans and eggs along with lots of vegetables and lower carbohydrate grains. I stopped eating all refined sugar, processed foods and basically drink only water and green tea. It's called clean eating, or in simpler terms, a Mediterranean diet. That's what I've been living on since my surgery.

I'm certainly not perfect, but when I've "cheated" with food that isn't "clean" it wreaks havoc on my body and my body is still not well, so it's frightening and a good reason to stay on track. It also makes that water weight come rushing back, which is strange. 

My medical team also put me on Naltrexone,  an FDA-approved opioid antagonist used to treat alcohol use disorder and opioid dependence. Naltrexone blocks the effect of opioids and prevents opioid intoxication and physiologic dependence on opioid users.  Obviously, that's not why I'm taking it. 

During the pandemic, Cleveland Clinic researchers discovered small doses were beneficial in helping the symptoms of long COVID patients.  My brain surgeon and neurooncologist signed off allowing me to try this treatment and I'm the third brain tumor patient to receive it.  If I did have COVID and did have a cytokine storm, my results may fit into the research.   

I started at .05 milligrams and within the first week,  all the water weight was gone. I'm still on that medication, and while it's experimental, it's been working for me and for some long COVID patients.

Another complication emerged when I had my MRI and they discovered I had a large brain hemorrhage or brain bleed. That's not unusual for brain surgery patients, but I still have it. It's getting smaller, but it's an issue we have to watch.

The last thing that happened - also not unusual for brain surgery patients - is that I now have temporal hollowing. This is a large dent in my head, specifically a flattening or indentation in the temporal area just above my cheekbone and behind my eye. It occurred due to retraction or damage to the temporal muscle during surgery. This has to be reconstructed, so I need to go through more surgery by the end of the year. It will likely be repaired using dermal fat grafting.

I'm not out of the woods just yet. I have to manage my stress, which is why I changed my schedule and came back to a morning shift where I can get a lot of things done and the stress level is actually a lot easier. The problem is getting me out of the newsroom here at 3News - they have to literally kick me out because I'm working too many hours.

I apologize for keeping everyone in the dark on this journey. I honestly did not know how to explain it, and truthfully I still don't have a lot of answers for why things turned out the way they did.  

I don't consider my surgery a failure. Remember this was research, a learning experience and there's no doubt the surgical team learned from my case.  

Without "failure" or cases that don't turn out the way they're expected to, science and medicine would never advance. Besides, there's no guarantee that even if the implant got into my head, it would have answered all of my hopes and dreams. Maybe this was the way it was supposed to turn out for me. The universe had to give me an important lesson to learn, too. 

What I do know for certain is what helps to get me out of bed every day and that's each of you. Providing you with information that might make your life a little easier or help you care for someone you love is my mission. The fact that you care about me, said a prayer for me, took a moment to think of me or just wondered what happened, means the world to me and truly helped me get through the most difficult time so far.  

I'm grateful for you. 

I'm not perfect. I'll continue to be that work in progress, but I won't stop doing the best I can, as long as I can and I'll continue wishing you and yours, good health.