About me:
My name is Tony Radmilovich and I am 59 years old. My wife and I live on five beautiful acres that we have lavished love, attention and no small amount of elbow grease on over the past 12 years. My wife Kim is blind so responsibility for maintaining the house and property has rested primarily with me which is fine because I enjoy it. For the past 15 years I have been a designer and builder of custom furniture and a writer for the last ten.
Kim’s blindness has posed many challenges for us over our 20 years together that very few people ever face or even think about and we have always just dealt with it and lived our lives as best we could but events of the past nine months have left me virtually crippled and put our future in great jeopardy.
My Story:
This may sound far fetched and somewhat long-winded but unfortunately it is true although for the sake of brevity, many of the low points of the whole affair have been left out. It is nevertheless a long story simply due to the many events that have left me in constant high-level pain and unable to sit, stand or walk for more than a few minutes at a time.
After months of physical therapy, ultrasound and epidural steroid injections, my neurologist recommended a fusion of my L5-S1 vertebrae which was performed in mid-November 2011. On the third day of my recuperation in the hospital, I was scheduled for an X-Ray to make sure that the hardware was holding properly and as I rolled out of bed to get into the wheelchair, the mattress began to slide with me and before I could do anything, it had slipped off the side of the bed, pitching me to the floor. Unfortunately, the horizontal base leg of my tray table was between me and the floor and I landed on it right on the incision site on my back. The Emergency Response Team eventually got me off the floor and into the wheelchair and the x-ray didn’t show any obvious damage to the hardware.
That evening I began feeling intermittent pain in my left sciatic nerve which I had never had before and the doctor attributed it to normal post-surgical irritation. A couple of days later I went home and began the long recovery from spinal fusion surgery, being very careful not to bend, lift or twist. After a couple of weeks the left sciatic pain worsened and eventually reached the point where I couldn’t bear any weight on that leg. My doc thought it might be a blood clot and sent me right to the hospital ER and I was admitted as an inpatient. An ultrasound and CT scan proved negative for the blood clot and my neurosurgeon diagnosed the problem as inflammation of my left nerve root. He put me on a regimen of oral steroids which gave me pretty much complete relief until shortly after completing the course when the pain returned. After a second course with the same result, he took a closer look at the CT scan and noticed that a piece of the hardware called an “interbody cage” was a couple of millimeters from where he had installed it in my spine and determined that it had been moving around hitting and/or impinging on my left leg/S1 nerve root. He strongly recommended removing it before any more damage could be caused and scheduled me for emergency surgery early the next morning.
After the surgery, it was found that my thecal sac had been cut and was leaking spinal fluid. The treatment for this was to lie completely flat in my hospital bed for 72 hours (which included Christmas day) while it patched itself. After release from this 5-day stay, I returned to the oral steroids as the pain persisted, eventually reaching the point where I had to be transported by ambulance to the hospital ER once again for pain control. A week or so after that, I noticed that my urine was a strange color and once again headed for the ER, thinking that it might be a recurrence of an earlier kidney infection. The ER nurse noticed some discharge from my surgical incision and a full blood workup was done. The results showed that I had contracted a severe Staph infection (during the previous surgery) and once again emergency surgery was scheduled. The surgeon found that my entire spinal area was badly infected and it had gotten into my bones and blood stream. He did his best to clean out my spine and hardware but he did not know how much damage it had caused. An infectious disease specialist ordered me on three months of IV antibiotics which required a “PIC line” be inserted through my arm and a portable IV pump that I would be hooked up to for that entire time. The antibiotics made me extremely sick for about a week and the leg pain got progressively worse after stopping the oral steroids.
Finally, the nerve pain in my leg became so extreme that I could not get myself out of bed and once again had to be taken to the hospital by ambulance. Another MRI showed new signs of infection and movement of the remaining hardware. Yet another surgery revealed that the hardware had become completely involved by the infected and the resulting inflammation had pushed it loose and allowed it to hit my already inflamed nerve root whenever I moved. The hardware had to be removed, leaving me with a spine that isn’t really attached to anything at this point. I spent the next two weeks in the hospital having been left in a condition where my nerve root was severely damaged and I was unable to stand, walk or sit at all. Just moving the wrong way would send an extremely painful shock down my left leg that would last for up to a minute. Between being almost completely incapacitated by the nerve damage and very sick from the infection, I lost nearly 40lbs. Over the past eight months, extensive physical therapy, occupational therapy and acupuncture has helped me improve to the point where I can once again shower, dress and cook for myself and walk short distances with the aid of a crutch. I can even drive a little now as well but although I have made great strides in getting some strength back, I am still very weak and have to rely on narcotic pain relievers and other meds to keep the pain at anywhere near manageable levels. Without the meds I can’t even get out of bed.
My L5-S1 lumbars remain un-fused and unless they reattach naturally, I will need yet another fusion surgery. The result of all this so far is four major surgeries and five hospital stays over a 2-1/2 month period. Through this entire saga, my wife was left to struggle with my care and being left to manage day-to-day problems that would be hard enough for a sighted person but beyond overwhelming for someone with no vision. I am happy to say that I am finally clear of the Staph and that I was quite fortunate to have survived it. I wish no one would ever again contract this dangerous and debilitating bacterial infection.
The Impact:
Though much improved, I still cannot be on my feet for more than a short times nor can I sit normally meaning that I have to spend much of my time lying down. As a result, I am not able to work, maintain our house and property nor can I do any sort of recreation or hobby. It is especially difficult since my wife can’t drive or pick up my responsibilities. Pain is constant and often well in excess of level 5 (on the 1/10 scale). We don’t know if I will fully recover or will be left like this for the rest of my life but in the meantime, we need to pay people to do the repairs and maintenance that I would normally do and I need to be able to continue my ongoing therapy and treatment.
Even though I have good medical coverage through my wife, the out of pocket expenses for surgeries, hospital stays and ambulance rides is in excess of $30,000 and I need ongoing therapies that are not covered in hopes of walking on my own again. We live a very frugal lifestyle and don’t need much to make us happy (we haven’t taken a vacation in nearly 20 years and I can’t remember the last time we went out to eat) but because I have so many unpaid medical bills, my doctors won’t see me unless I can take care of them and with no income, it is impossible to keep up with them. My wife is highly educated and earns a fair salary but being blind, her opportunities are greatly limited and her income goes toward mortgage, utilities and food but with my continuing medical needs, it just doesn't go far enough. We don't spend money on anything beyond the bare necessities mentioned so there isn't anything we can cut back on to deal with all of this.
As I approach the one year mark, the hope that we will ever have anything resembling a normal life grows dimmer and the realization that I can't earn enough money to help keep us afloat has been a staggering blow. The sad fact is that a person in their late fifties who needs large doses of powerful prescription pain medications just to get out of bed for 12 hours a day and can't walk, sit or stand for any extended length of time doesn't have a lot of options. Neither one of us have ever asked aked for help before but this time we are on the ropes.
