Blog

Posted on

October is AVM Awareness Month!

October is AVM Awareness Month & National Employment Disability Month. In the Organization I currently work for I am a member of the Multigenerational Network under Diversity, Equity, and Inclusion. I was blessed with an opportunity to write and publish an article to share my story for all employees nationwide on our internal page called T-Nation. It is only rare until it happens to you and we must do our part to spread knowledge. Read a copy below and I encourage you to help me advocate for this rare disease. Individually our voice may be ignored but, together we can be loud & make a difference.

“A champion is defined not by their wins but by how they can recover when they fall” -Serena Williams. 

My name is Mario van der Ree III, proud Market Outreach Specialist, parent, and member of the MGN in Ft. Lauderdale/West Palm Beach, Florida, and Serena’s quote really resonates with me. 

On March 10th, 2018, while cooking breakfast with my wife, I suffered from a hemorrhage stroke, caused by a ruptured AVM I had at birth.  God, along with the Memorial Healthcare system, saved my life and honored me with a second opportunity that I will never take for granted.

I am grateful to have survived and thankful for T-Mobile’s support throughout my 2018-2019 medical journey — and my entire 11-year career since 2009. 

What is an AVM?

A brain arteriovenous malformation (AVM) is a tangle of abnormal blood vessels connecting arteries and veins in the brain. The arteries are responsible for taking oxygen-rich blood from the heart to the brain. Veins carry the oxygen-depleted blood back to the lungs and heart. A brain AVM disrupts this vital process. An arteriovenous malformation can develop anywhere in your body but occurs most often in the brain or spine. Even so, brain AVMs are rare and affect less than 1 percent of the population.

Below is a brief overview, and a strong demonstration of why my passion for the T-Mobile brand will never die.

On March 10th, 2018, my last words to the paramedics before losing consciousness were, “my son is six months old; you must save me!” and as soon as I heard “we got you bud,” the lights shut off.

The bleeding in my brain was larger than the size of an egg. I had an emergency craniotomy, then placed into an induced coma, and my entire family came into town due to the uncertainty of the outcome.

A few days later, when I woke up, my wife brought me up to speed, and it was a difficult pill to swallow because I was a healthy adult. I could not move the left side of my body at all. I was considered a total assist (Total assistance means that staff or another individual performs the entire activity of daily living without participation by the resident).

A few weeks later, I was transferred to the rehabilitation hospital. I was told I might never form connections in my brain again, I may never walk again, and I may never move my left side again. I was asked what my goal was, and I replied, “I am walking out of this hospital.” I was looked at by the staff like I was crazy.

Against all the odds and passion for my son, my wife, family, and career, I walked out of the hospital on my release day. 

My wife was instrumental in my recovery and in keeping our family going. We had a 6-month-old son, and my wife had to stop breastfeeding to take care of my son and me.

I thought my journey was finally over in July, but in August, I was given tough news that the AVM was still there, and I was at high risk. I went for a second opinion and was told surgical removal was the gold standard for a complete cure, and I said, “let’s do it.” My desire to be here for my family is just too strong.

On Halloween 2018, I had my second craniotomy and angiogram to confirm obliteration and the cure of my AVM. 

Throughout this story, I came back to work after every stay in the hospital to a multitude of support from everyone at work and no worries about my job security. Why? Our culture is just incredible. With the benefits that T-Mobile offered, I was able to take the time needed to recover without worry that I would have a job to come back to. 

I want to thank my co-workers, my leaders, for my Human Resource partners for all their support throughout my journey. My family and I received so many well-wishes and mementos to keep me going, including a welcome back celebration when I returned to work. My full recovery period was two years, but my T-Mobile family made it a wonderful process.

If there are two words I would love for you to remember from this experience, the possibilities are endless with passion and resilience.  I self-identify as a person with a disability. The hemorrhage stroke triggered by the AVM caused impairments such as temporary paralysis at first, sensory disturbances at times, and problems controlling my movements on my left side which some will be indefinitely. I also became a mentor for stroke patients at the hospital system that saved my life. Not every disability can be seen and that is why it is important to “disable the label”.  My goal is to inspire those in need of hope through my grueling yet miraculous story. I am proud of my story because it brings awareness to strokes, AVM’s, & survivors.

To learn more about AVM and its effects, you can visit this LINK.

Posted on

Brain Surgery – Removing a AVM

Two Brain Surgeries!?

My sincere apologies, Mario has been on a lengthy hiatus. So many battles and victories have happened since my angiogram on August 31st of 2018. In a nutshell, I had a second brain surgery on Halloween (2018), a seizure this February (2019) which ended my independence for about 6 months (no driving), graduated from FIU this July (Class of 2019), we sold our small townhouse, bought a larger one, and my son is just growing up extremely fast. So, why a second surgery? My angiogram results indicated 10% of the AVM was still present and I was considered high risk for a second hemorrhage. Receiving tough news regarding your life is a terrible feeling and I honestly do not wish it upon anyone! However, your instincts immediately takeover and time becomes of the essence. I felt like Neo from the Matrix dodging bullets during the slow-motion scene. I did not qualify for CyberKnife (Radiation) and a specific neurosurgeon I spoke to lacked confidence which would probably make anyone in my shoes nervous.

What would you do? Get a second opinion from Doctor McDreamy? In reality, the next few days my entire family became an expert doctor/neurosurgeon google analyst. We concluded the gold standard to cure an AVM is surgery. So, the hunt began for the best-specialized neurosurgeon in South Florida for AVM removals. We decided to talk to UM’s Dr. Jacques J Morcos who ironically saved both my uncle and grandfather’s life by removing their brain tumors. He is also a professor who is well known nationally and internationally. Why not meet the wonderful man for some professional insight. Of course in the blink of an eye my mom, dad, uncle, aunt, wife and myself were in his office for a consultation. My entire medical history had been delivered days prior to the appointment to facilitate the process. We could hear him outside educating another doctor on my case before walking in. “Hello family, I know you are here for a second opinion and I respect that. Son, if you want to close this chapter let me do surgery, remove the AVM and call it a day.” He was assertive and upfront. Even though I was hoping for an easy way out, I ended up accepting his recommendation while remaining cool and collective. Sometimes I wonder if my peacefulness comes from sharing the same birthday as Bob Marley. “Mario, my team will call you to discuss the surgery and scheduling please be patient because it will take some time.”

The next few days at the office felt like I was in a scene from the walking dead. It was bright, dark, mysterious, and endless thoughts were rushing through my mind. Will I have to learn how to walk for a second time? Will this chapter truly end? Will I recover quickly? Are two brain surgeries back to back normal? Did I make the right decision? Will I wake up? It was important to remain unfazed for my family’s sanity. I remember thinking to myself “Damn, this will be one hell of a story for when my son grows up!” son1

One or maybe two weeks later I received a call from the doctor’s office. “Mario, we want to schedule the surgery for October 31st. Does this day work for you? My heart stopped, I was expecting surgery sometime Q1 of 2019 and it all seemed to be happening extremely quick. I was so confused and answered, “I don’t know, I need to have some conversations.” The ironic part of all this is that I detest Halloween, which technically made the date work in my favor. Luckily, T-Mobile is beyond understanding to all employees and supported me 1000%. pic2surgI was encouraged to win this battle and to put my health first. I returned the phone call and accepted the date! It was time to prepare and shave my head. Why not make it easier for the surgeon… 

To learn more about AVM and its effects, you can visit this LINK.

 

Posted on

Stroke Alert! – The Wife’s Point of View

Written By: Mariana van der Ree

“Stroke alert! Stroke alert! Emergency room…” Those were the only words I heard, as I arrived into the emergency department at Memorial West Hospital. Nurses rushed into a corner room, where my husband was laying on a stretcher being intubated, and I clearly remember the look in everyone’s eyes “Poor little girl”. Why does someone so young and healthy have to experience an event so bizarre? I was honestly hoping to wake up from the worst nightmare of my life. I felt lost, confused, and terrified because just less than an hour ago my husband was cooking breakfast.

I remember exactly the moment when the doctor told me my husband had to be transferred to Memorial Regional Hospital because he needed immediate surgery to stop, and drain the massive bleeding in his head (Pretty hard pill to swallow if you ask me he literally just turned 30). The paramedics put me back in the ambulance, and we were headed for his emergency  craniotomy. As I rode passenger, I saw people driving their cars, walking with their family, and it just seemed like such a normal Saturday, but definitely not for me. I turned around to see a nurse pumping oxygen into my husband, and he was trying to reach for her hand thinking it was me (Pretty Heartbreaking).

As I entered Memorial Regional and my husband was getting prepped for surgery, they gave me his wedding ring. The Surgeon came over to introduce himself, as well as explain how he would need to remove part of my husband’s skull for 2-3 weeks, and told me I had to sign a bunch documents. I now carried the difficult responsibility of making medical decisions for him. Only 6 months ago I was rushing through these similar OR doors to deliver our baby boy. Why is this happening? Why did my husband have a hemorrhage? So many questions, and no concrete answers.

Now the waiting begun. A surgery that took 2 hours felt like 2 days up until I saw the surgeon coming towards the waiting room. “The good news is, I was able to stop and drain the bleeding. The bad news is, I do not know what caused it so, we are running some more tests.” The doctor also informed us (The entire family and more filled the waiting room) that where he had to enter the skull was an area which controlled movement of the entire left side, and he didn’t know how much damage was caused. He only knew that there would be weakness. “I did not have to remove part of his skull thankfully…”

Walking into ICU, seeing my husband intubated, with half his hair gone, staples in his head, and with the same socks he was wearing that morning felt so surreal. The risk of another bleed was still present and a CT scan was done at 8:20PM. The results were shared with us the next day. It was the longest night ever! The next morning, the lovely nurse finally gave us the results. The bleeding was caused by a Arteriovenous malformation (AVM) and we need to get Dr. Duong’s team together, to perform an Angiogram. 

IMG_7222

Here we go again, another waiting game until they put the whole on call team together to perform the procedure. I felt like I signed more paperwork these days than when we bought our first house. During the angiogram I was called to see pictures of the AVM. I was advised he would try embolization (Inject glue through the artery into the malformation), but that the AVM was so superficial he doubted he would get to it with the catheter. 

I paced nervously throughout Memorial Regional’s halls, then actually bumped into the doc who gave me the great news he was able insert the glue. Of course, I jumped hysterically, hugged him, and noticed right away he was not use to the affectionate Hispanic culture (Who doesn’t like hugs though?). He saw the amount of family then asked “Hey is that the whole family?! Can you do me the favor and update them please”.

Now we had to wait for swelling of brain to go down, before the doctors could removed my husband from an induced coma. How the hell am I suppose to explain to him what happened? Will he remember everything? What did the doctor mean by “a weakness on the left side”. Overwhelmed with questions, and emotions, but nothing compares to the miraculous journey my husband was about to go through after waking up from his coma. After 3 days in ICU, the time came to wake him up! “Let’s remove the tubes and slowly reduce medication…You might want to step outside for this…” The nurse suggested. Until I heard… “Babe, babe, Take me to the hoosssspital…” As you all Remember.

To learn more about AVM and its effects, you can visit this LINK.

Posted on

I have an Angiogram on August 31

I’m taking a small break from my story to share a dilemma I’m currently facing because it is affecting me a bit at the moment. Also, the next part of my story will have to be written by my wife since I was in an induced coma for a few days. Lets give her about a week because shes been extremely busy.

You are all most likely wondering what in the world is an angiogram. I get it, we are all busy playing Fortnite or doing the Drake “In My Feelings” dance, so let me explain. It is a procedure done by a doctor with a team (Lucky for me Dr. Hoang D. Duong is amazing and if i am not mistaken he is a director for Memorial with over 30 years of experience).

Here is the general breakdown. The procedure requires the patient to be completely still in order to be effective and successful. Step one, you are sedated (I am typically maxed out due to fighting it and not relaxing). Step two, they will sterilize your groin area where a minuscule incision will be made for a specialized catheter. Step 3, the catheter is inserted and threaded through blood vessels to get into the carotid artery. It is located in your neck and carries blood to your brain. Experiencing these medical advancements first hand really surprises me as I learn about them myself. 

Now onto the final steps. Once in the Carotid, a contrast dye is injected and it will travel into the blood vessels in your brain (sounds like a fun long weekend huh?). Finally, multiple X-rays are taken, however I’m not to sure how the logistics work throughout all that scanning process. Then everything is removed and the incision is closed. 

 

The whole procedure lasts from one to three hours and because of what I recently went through I will be required to stay at least 24 hours. So why are you so stressed out Mario? Like with everything in life, risks exist and I have to sign off on them. The possibility of another stroke, excessive bleeding, formation of blood clots, puncturing an artery etc. My family and I went through so much already, nevertheless this is home stretch for me. If all goes well I should live the rest of my life worry free and lets face it you cannot put a price on peace of mind.

IMG_1531

This will be my 2nd Angiogram, the other was done right after my craniotomy which is how the AVM was found and thankfully the embolization was successful. This is like the “lets double check follow up.” I have a good feeling everything will go well. My son’s birthday is right after all this mumbo jumbo and I cannot wait to spend time with him and my wife who has stuck by my side 24/7. I married the right woman hands down.

Now back to your regular scheduled program… 

To learn more about AVM and its effects, you can visit this LINK.

Posted on

What Does a Stroke Feel Like? – Part 2

“Please turn on the AC, it’s so hot!” I remember telling my wife and right after “Bring me water I’m thirsty.” At that moment, I was laying down in front of our couch and she had just hung up with her mom who lives 5 minutes away. The pain inside my head was so intense I told her it was time to dial 911 (I knew we wouldn’t make it on our own). While on the phone explaining to the operator the entire situation Mariana was able to go get me a glass of water. 

The operator began giving her directions to perform tests based on the information she had gathered. “Mario! Smile for me!” my wife demanded. I thought to myself “You got to be freaking kidding me!” Not knowing what I know now about stroke signs. I mean, who expects experiencing one at the age of 30? My wife immediately informed the operator lady that I was able to smile. 

On to the next test, “Babe, repeat this sentence after me.” Oddly enough, I only remember the word “worm” from the entire sentence, but I also passed. Finally, I was asked to lift up my arms and I only rose my right arm because i happen to be laying down completely on my left side. Through my wife’s eyes I had technically passed (Totally failed it though). It was time for my drink of water or should I say chug of water. Not even 30 seconds passed when I started vomiting all over the floor and a sofa pillow. The pain became so bad i started holding my head (instincts I guess).

The paramedics arrived in less than 10 minutes, but to me seconds were minutes, and minutes were hours. My soul was fighting the hardest battle to date, and struggling to stay in it. I felt myself wandering into another dimension not even wanting too. I still wonder today what the heck was happening, why everything was so calm too. 

At last I heard what seemed to be shouts from someone, it was one of the paramedics (there were three apparently, and I would love to meet them soon). “Hey! Hey! What is your name?!” he yelled. My wife tells me I was passing out or losing consciousness around this time. “Mario! How old are you?! As I drifted in and out I still tried to comply. “Mario! squeeze my hands!” the man insisted. I really focused on doing what I was asked, however I could not squeeze with my left hand. “I’m sorry” I said disappointed. “No need to apologize my man.” he replied. 

They began loading me on to the stretcher, and I made sure to get something off my chest quickly. “You have to save me, I have a baby boy.” If those ended up being my last words, I would have been proud and at peace knowing my last thoughts were about him. I don’t remember anything else but one worrisome flash back from the ambulance. “This is not good, we need to hurry up and enter…”the paramedic informed the driver. Those words were slowly fading away because I was officially unconscious…

Welcome to the very beginning of my insane journey and thank you for all the support. Share your thoughts in my comment section below on this or all blog posts.

To learn more about AVM and its effects, you can visit this LINK.