by Alex Biagi
I've always been very athletic and from an early age played multiple sports including soccer, basketball and martial arts. I played soccer from age 6-15, basketball from age 12-24 and martial arts only for a couple of years 12-14, because I split my patella playing basketball. After my knee healed I decided to focus solely on basketball. I was entering my freshman year of high school (1997) and wanted to try out for the JV basketball team. I was spending every minute I could practicing basketball. I was working on my legs all summer, trying to increase my vertical and get in the best shape I could before the start of the school year. I was determined to increase my vertical enough to be able to dunk and after lots of practice I was finally able to!
One day in late winter, I was outside playing basketball with a friend during our lunch break when he accidently elbowed me in the back as I attempted a dunk. It hurt quite a bit at the time, but I didn’t think it was serious. I was able to finish the game and I finished the school day. Since I was still working on getting in shape for the upcoming tryouts I decided to run to my parents’ restaurant after school, which was a mile and a half away. At the time everything seemed fine.
My back felt pretty sore that evening, but later that night I was sitting on the couch watching TV and I started to get severe leg cramps and severe shocks going down my left leg from my tailbone. The pain was so intense I screamed out loud and my parents came running to see what was going on. I was also starting to have terrible back spasms on top of the painful shocks.
My parents helped me up and I tried to walk but it was very difficult. The following morning my Mom took me to the doctor. I wasn't much better. I was still having spasms and leg tremors and the doctor was baffled. As a precaution my doctor sent me by ambulance from his office to Children’s Hospital in Denver. There they did a neurological evaluation and found nothing out of the ordinary. They said I was just having growing pains. During the summer I had grown a ridiculous 8 inches to 6’1”, so it made sense and we didn't question it. They gave me some painkillers and we went home.
For the next few weeks or so things seemed stable. Then one night it happened again, only this time it was way more severe. We rushed down to the emergency room at St. Joseph Hospital and I was given more pain medicine. After a lot of questions and no real idea what was wrong, the young resident neurologist meekly suggested that perhaps all my pain was in my head! Again they insisted that it was nothing but growing pains. So they sent us on our way. I continued to go to school, but by the time I got home every day, my lower spine was in spasm and my legs were so tired I could hardly move. Painkillers were the only things that would give me relief. As a result I was starting to get pretty dependent on Valium and Percocet. I was able to walk short distances, but not for very long. My hands and feet would turn red and feel like they were on fire. This went on for about a month after the first visit to the emergency room. Things were getting worse and I was starting to become partially paralyzed from the waist down.
A few days later it happened again and the pain was really severe.We rushed again to the emergency room and the doctors saw I couldn't move my legs. I think someone suggested I might have MS. It was then that they finally decided to do a different test. This time they did a spinal tap and again they gave me more painkillers to help ease the pain. Afterwards I was able to move my legs a little bit. It was very late at night when we left the hospital so we went to my grandmother’s house, which was nearby so I could rest. They must have sent me home too soon after the procedure because I ended up getting a massive headache. I was having such a terrible headache it knocked me to the ground when I tried to stand up. It was one of the most painful experiences of my life.
We called the emergency room and told them what was going on. They suggested I drink a lot of caffeine to help get rid of the headaches. That morning we bought a six-pack of soda called "Surge". At the time it had the most caffeine of any soda. Drinking the soda helped a little bit, but nothing was really getting better. But after a day, the headache eased up and we anxiously awaited the results of the spinal tap. It turned out that there was nothing abnormal with my spinal fluid. We felt frustrated. I think it was my Dad who suggested rather strongly that an MRI was required at this point. My doctor hesitantly agreed. Within a week I was referred to see a neuromuscular specialist at University Hospital. His name was Dr. Ringel. He asked me lots of questions, and agreed that an MRI was necessary to get to the bottom of what was happening. Back in 1997, MRIs were not done as frequently as they are nowadays. It was a big deal!
So a few days later I got the first of many MRIs and the result was that I had spinal stenosis!
Spinal stenosis usually happens to people over the age of 50, so this was a very unusual case. In hindsight I can see why it took them so long to figure it out. No one ever suspected it to be spinal stenosis!
Spinal stenosis is the narrowing of the spinal canal. My spinal canal was too narrow for my spinal cord and the vertebrae in my lower back were pressing on my sciatic nerve. I eventually had to have a four level decompressive laminectomy. That is where they remove the part of the vertebrae that you can feel with your finger on your back. Picture a doughnut as a vertebrate, and take a bite out of the doughnut, that's what they did. I was young so they decided to use some of the muscle from my back and graft it in the spine to give me flexibility. I was in the hospital for a week and I had to relearn how to walk. It was a very trying time, but I got through it. I finished the school year being home schooled.
That summer I did lots of physical therapy and I tried to get my back in shape. It was very difficult, but I was able to get to a point where I could get my first job and I was also able to play basketball again. Unfortunately the way I played led to some knee problems. My kneecaps kept dislocating when I ran. I went to the orthopedic doctor and was told I needed to have surgery on both knees. My kneecap would move all the way to the left and cause terrible pain. So at the beginning of my junior year I had surgery on my left knee and later that year, my right knee. Physical therapy was really hard on my knees because my back was sore as well, but I managed to get through it again and get my knees back in shape. They had to put two screws in each knee to keep the knee cap from slipping out of place and later that year I had them removed. So in total I had four surgeries on my knees, 2 on each. Luckily or unluckily, however you want to look at it, being so young I was able to heal quickly from all of these surgeries. And because of all the surgeries I decided not to pursue basketball or play any kind of sports for the rest of my high school days. I did continue to play basketball very carefully - but just with friends, nothing too competitive. I gradually turned my attention to my other passions, art and music.
During the time I was playing sports I also played the piano almost every day. I learned to play from my mom and sister at the age of six. I loved to draw as well. I've been drawing as long as I can remember and my whole family is artistic. Realistically I knew from a young age that I would probably be a cartoonist or do something in art–media. So after high school (2000) I went to college to learn 3D animation, multimedia production and design. I also took several music production courses as well. I was really enjoying them so I decided to double major with music as my second major. I was really getting into producing electronic music and I started to invest in some music gear. I bought an expensive piano, computer and a beginner digital music program. I was on my way! I figured since I wasn't going to pursue sports this would be the next best thing and things were going great! And I was starting to feel really good!
During my freshman year of college (2000) I was working three part time jobs, and my back and knees were finally feeling stable and healthy. Life was good! After my first semester I decided to quit my part-time jobs to look for a steady job. I ended up finding one at Costco. It was really exciting, because it paid really well and I could envision myself earning enough to move out of my parents’ home and begin my own adult life. I started out pushing carts. The job was very labor-intensive because Costco didn't have a cart pusher at that time and if you've ever been to Costco you know they have the large carts. It's a lot harder to maneuver the jumbo-sized carts, but I enjoyed it for a while. It was pretty fun actually. I would eventually make enough to move out and live with my best friend and another good friend of ours. One night I was closing the lot and I was pulling a few too many carts with the rope. As a result I dislocated my left shoulder lol. To this day my shoulder isn't the same. I never really had it set properly. So after that I got out of doing carts and was transferred to the front of the store assisting the cashiers.
One day as I was working and I started to notice my back was getting really sore for some reason. I took a break and when I was walking back to the check out area my back went into full spasm. It was one of the worst I'd ever had. It was very different than ones I'd had before. It was so bad I fell to my knees and was screaming out loud. I turned over to lie on my back and it looked like I was having a seizure! The supervisors saw me and came running over to help me. They called an ambulance to take me to the ER. It was extremely painful and embarrassing. They were able to get it under control at the ER with some heavy painkillers and later that week I went to have another MRI done. It turned out the discs between the vertebrae were starting to deteriorate in my lower back due to the previous surgery.
More spinal surgery was in store for me, this time to stabilize my spine. Prior to having this next surgery I was required to wear a custom made body brace that went from my waist to my neck, front and back. It was made of hard plastic and it was very uncomfortable to say the least. I had to wear it for three months before the surgery. Costco transferred me to the gas station and I opened the gas station every morning during the summer. It was so hot and the brace made things really miserable! The surgery couldn't come soon enough!
In late June, 2001 I had spinal fusion surgery to stabilize my spine at levels L2 and L4. They put in a titanium cage with three screws on each side and two bars going across. After all the hard work I put into getting my body strong again it turned out that physical labor was ruining my back. The surgery went well. One of the things that you are required to do in the hospital after surgery is to blow in a little device several times a day to keep your lungs clear. Even though I did that it was not enough to keep me from developing pneumonia.
I had been sent home 5 days after my surgery, but was back in the emergency room eight hours later with a fever of 104 and a serious case of pneumonia. I had to stay in the hospital for another 5 days. I only had 5% of my lungs unaffected by the pneumonia. I was gasping for air on the way down to the emergency room, thinking I was going to die. We got there in time and I was able to overcome this bout of pneumonia. It was a very unpleasant experience,but wouldn’t be the last.
For the next few years I managed to keep my body in pretty good shape all things considered. I continued to get back spasms, but nothing like the one I had that day at Costco. They were still pretty bad from time to time,but I was handling it. I got bounced around different departments at Costco,doing whatever they needed me to do. Things finally seemed stable and I was back playing basketball and finally living on my own with my best friend and another good friend of mine. I was twenty years old.
You’re probably asking yourself, why would I still continue to play basketball with all of the things that happened to me? Well, when you love something you do it until you can no longer do it.
Carpal Tunnel Misdiagnosis
Fast forward three years later (2004). I was still working at Costco and I noticed that I was getting cramps in my left hand. I couldn’t spread my middle finger and ring finger apart and they also started to feel numb. I had been working on a lot of music and computer work the previous week so I thought my hands were just tired from too much piano and mouse clicking. After a time, it became hard for me to separate all of the fingers on my left hand. Soon it started happening on my right hand too, but not as severely.
I had been working at Costco for 4 years and I had health insurance through them with Aetna. I went to a different neurosurgeon in Denver (not the one who performed my back surgeries) and after he performed an EMG test, he diagnosed me with carpal tunnel syndrome. In addition to supposedly having “carpal tunnel” I was having lots of pain in both elbows. It felt like when you hit your funny bone all the time. He wasn’t 100% confident in the carpal tunnel diagnosis, but decided to do surgery anyway. In late 2004 and then again in 2005 I had surgery on my ulnar nerves on both elbows and hands. After the appropriate length of time and physical therapy, I realized there was no improvement in my hands, in fact things were getting progressively weaker.
By September of 2005 I was no longer able to do my job at Costco and I had to quit. I also realized I could no longer live on my own and I moved back home to my parents’ house. Soon I could not bend my fingers all the way on my left hand and had very limited motion in my right hand. Around October I started to notice my legs and feet were getting weaker and weaker. I was having trouble walking. On Thanksgiving my ankle gave way and I fell down a flight of stairs in my home. Luckily I fell on my butt first and not my back, even so it was extremely painful. The reason was I was starting to develop a stepping gait due to foot drop. We weren’t sure what was going on! Another mystery lol
In 2006 I started health care coverage with Kaiser Permanente since I was no longer working at Costco and was seen in the Neurology department. Our new neurologist decided to do a muscle biopsy of my right bicep to rule out any neuromuscular diseases. I was also referred to the same specialist inneuromuscular diseases at the University of Colorado Hospital that I had seen when I was 16! For the next two years I would go through various tests and many doctor visits. Unfortunately, things were getting progressively worse and no one seemed to know what was going on. I guess you can say I was a bit of a mystery again! lol.
In early 2008 I suggested getting a 2ndopinion from the world famous Mayo Clinic. Luckily my Kaiser doctor was open to that idea because he had run out of ideas and tests to perform. So, I was referred there. I was quite weak by then and using a wheelchair to get around outside of the house. My mom and I went out to the Mayo Clinic in Scottsdale, Arizona in March of 2008. We were there for a week and they performed multiple tests and a very thorough evaluation. After doing an EMG (which is very painful), they were able to diagnose me with a very rare autoimmune disease called CIDP. A nerve biopsy of the sural nerve in my right my ankle was done to confirm the diagnosis. The results of that biopsy were inconclusive, but nonetheless, they believed I had CIDP.
Once I returned to Denver, I began a regimen of prednisone and IVIG treatments for the next 6 months. The IVIG wasn’t too bad,just really time-consuming. It was 4 days in a row for 4 hours each day every week for 6 months. The side effects were tolerable. Normally, just an upset stomach afterwards. The prednisone was a little bit harder to handle. I was on a very high dose, so I had very bad mood swings and I gained 15 pounds in 2weeks! After all this I still did not get better. My symptoms worsened and I was soon unable to use my hands. My left hand had become completely paralyzed from the wrist down and I had very limited use on the right. I could only bend my thumb, index finger and middle finger. Being a musician, next to being blind or deaf, this was one of my greatest fears and itwas becoming reality. Your hands are your greatest tools not just in music but life. I needed help eating, dressing, toileting, holding on to anything. Luckily I am still able to use a mouse, so I adapted the way I wrote music on the computer. I was no longer able to play the piano, but to this day I still write music using a feature called the “piano roll” in the music software I use. It takes a little bit longer to write music,but I’m thankful I am still able to do it. After the IVIG treatments, I began several months of methylprednisolone IV treatments. Again there wasn’t any improvement.
In March of 2009 I was referred to the Mayo Clinic in Rochester, MN for a follow up at their main clinic where the neurologist I was going to see is one of the foremost experts on CIDP and one of the top neurologist’s in the country. Once at the Mayo Clinic more EMG’s and MRI’s were done and another biopsy, this time a nerve in my left wrist. When they do these biopsies they take a 3’’ piece of your sural nerve and stretch it out to about2 to 3 feet. They then cut it into pieces and run several different tests on it. This time the nerve showed I did have CIDP. I had to have a central line put in my neck for I was then ordered to begin Plasma Exchange when I returned home to Denver. However, when I was waiting in the room to go into surgery for the biopsy there was a man in the bed next to me who was very sick and was coughing up a lung! It was absolutely disgusting to hear him cough so violently! I have never heard anyone cough like that before. I didn’t think much of it at the time, but when I returned home I developed another severe case of pneumonia. I think having my immune system compromised and being next to that man gave me pneumonia. This was worse than the 1st time. I had to be incubated for 2 days in the ICU. Again, I felt like I was going to die, but somehow managed to survive this one as well.
After this setback I recovered from the pneumonia and became pretty stable, but I had lost so much function and ability that I felt completely disabled. My Mayo clinic doctor then instructed my neurologist at Kaiser to start me on a cytoxan regimen for 3 months. Cytoxan is an oral form of chemotherapy. They wanted to suppress my immune system. The theory is with a suppressed immune system the bad cells that are attacking my own nerves would be suppressed and it would slow down their attack. We did this in 2010. I then stopped the cytoxan and also the Plasma Exchange in September of 2010. I was feeling better and wanted to see how I would do off of the immuno–suppressant and Pl Ex.
In December, I returned for my annual follow-upappointment with my doctor in Rochester. After completing an MRI I returned to my hotel room with a sandwich for lunch. After a few bites, I felt lightheaded and weaker than ever. I lay down on the bed and my mother, who was with me, became very concerned. I was having trouble breathing and was very pale. She called 911 and I was transported to St. Mary’s hospital. I remember being in the ambulance and the EMT asked me some questions and when I tried to speak it sounded like I had just had a stroke. He was asking me if this was my normal voice and when I said no I could tell he was really concerned. My speech was slurred, my mouth felt droopy and I couldn’t speak loudly. My upper body was becoming paralyzed! I couldn’t move my shoulders off the bed and I couldn’t lift my head up! My lower body seemed to be working fine, because I was thrashing my legs back and forth, freaking out thinking I was about to die. It was like a scene out of a TV show or movie. Once I got to the ER they transferred me from the ambulance stretcher to a bed and asthey did this my head dropped back and I thought my neck broke! It was theweirdest feeling.
Once in the emergency room, I remember being surrounded by many doctors and nurses. I was asked so many questions and was still having trouble breathing. lol. A CT scan was performed to rule out a stroke and it came back negative. They then put me under and that was the last thing I remember for an entire week. It turned out I experienced respiratory failure and was subsequently intubated and put in the ICU. All of the nerves that control muscles used for breathing, temporarily stopped working. Thankfully my doctor had seen this type of thing there before and knew what to do. He ordered a central line put in my neck and they started plasma exchange while I was unconscious.. In addition to the plasma exchange they also decided to do another nerve biopsy, this time in my right ankle. So in total I have had 4biopsies. I remained in the ICU for one week. A feeding tube was inserted and I was fed through that .After coming off the ventilator I stayed one more week ina regular hospital room. The doctors called it a severe exacerbation of symptoms, probably caused by me being off of any kind of treatment for the 3 months prior to this visit. My weight fell to133 pounds.
I spent Christmas in the hospital with my parents at my side. This was one of the strangest and worst Christmases to say the least. I had to do a lot of physical therapy in the hospital before I could return home. It was very different from my previous surgeries and this experience was the hardest of any of them. It was just a weird coincidence that all this happened while I was at the Mayo Clinic for my yearly follow up appointment. Luckily they have seen this kind of thing before and were able to keep me alive. I had to learn how to eat and drink again. That was a very weird experience. I also had to do all kinds of breathing exercises and be able to walk on my own before returning home. I was in the hospital for 2 weeks total. I returned home to Colorado on December 29th. I recovered slowly at home, resuming Pl Ex twice a week for all of 2011 and 2012 and adding 100 mgs of Imuran per day, an immunosuppressant. In May of 2013 we dropped down to Pl Ex once a week. I am still doing that and taking 100 mg. Imuran daily.
I think I managed to survive all of these hardships because I am able to stay positive! I try to think of life as the glass being half-full despite being disabled. I have everything I need and in that regard I’m very lucky. I have an amazing family who’s been with me every step of the way and I’m sure I put a few gray hairs on my mom and dad’s heads. I also have an amazing set of friends both real and online. My real friends are incredible.They come up to my house, which isn’t very close to them and take me out to the movies, lunch or dinner. I also have a passion for music, which keeps me going! Music is an extremely powerful thing. I think it’s kept me alive more than once. Thinking about working on the next track or project!
In 2014 I heard about a stem cell study for my disease in Chicago at Northwestern University. So my mom and I went and tried to get in but unfortunately I was deemed too severe of a case and could not participate in the study. By this time I was in a wheelchair pretty much full-time. I could walk a little bit around the house but not much. I ended up in a power chair for long-distance outings.
In 2016 I kept looking four studies to participate in and I found one in my home state Colorado at the CBCI center in Denver Colorado. Thankfully I was accepted and underwent the procedure. This is a HSCT transplant which means the stem cells are from your own blood. I went through super heavy chemotherapy which destroyed my entire system and I did a bone marrow transplant as well.
I almost died from this procedure because I had a bad reaction to the rabbit anti-body they reintroduce as part of the protocol (this won't happen to everyone). I was code blue and rushed to the ICU. I had respiratory failure. I was intubated for five days and in the ICU for 20. Overall I was in the hospital for 42 days but the doctors were amazing and I pulled through. Now (2019) I'm walking close to 2 miles without stopping wearing braces on both legs. I have almost 0 pain, more energy and stamina. prior to the stem cell transplant I could not raise my arms above my head but now three years later I got almost full motion back in my right arm and my left arm is getting close to full-motion as well. Sadly no improvements in my hands yet. So overall it was a huge success and I'm continuing to see improvements all the time. Despite almost dying it was worth it. I'm now able to paint with my mouth and I'm some great exposure through Reddit and YouTube. I've been painting with my mouth for four years now and each painting takes a long time but I'm getting faster all the time. in addition to mouth painting I also work on graphic design add music digitally. I have enough strength in my right hand to use a computer mouse. I typed this using a voice to text program called Dragon dictate for Mac. Thankfully there's a lot of technology out there for disabled people.
I’m no longer able to play basketball, but I still love it and I watch my favorite team the Denver Nuggets every game. I have seen almost every game for the last 4 years. I've been a diehard Denver Nuggets fan since 1992. I’m also a big Broncos fan. I've been watching them since I was six years old (1986). Sports are a big part of my life as well.
If you stay positive you can find ways around disabilities and still live a productive life. But you have to be proactive as well. Or things will never change!