RSD Interview ##19 - With John Mandinec

1. How and when did you get RSD?

When I was 25 years old I was a manager of a Toys R Us Store. I was placing a ten speed bicycle on a stock room shelf. I was about 20 feet up on the ladder I was using. While climbing, I fell backwards while still holding onto the bicycle. While falling, my left arm was holding much of the bike and I tore my left rotator cuff. I hit the stock room floor so hard that many people in the surrounding area said they felt a thud when I hit. Witnesses immediately called 911 assuming that I had a spinal injury. I do recall not having any feeling from the waist down for a brief time. I was taken to the nearest Trauma Center which was at a University Hospital. The doctor treating me was amazed that I did not have any injury to my spine. When the doctor came in to tell me the results of all the x-rays that they had done, he said it in a very soft, but monotone way that “You didn’t break any bones, but one day you may wish you had.” I did not understand it then, what he must have meant by that, but I guess he was right. But I had broken many bones in the past, and they just healed and that was it. How much worse could a torn rotator cuff be, I wondered. After a while of being out of work and getting therapy, but not feeling any better (worse, actually; much worse), I knew something was not right. The pain was so bad, unlike anything I had ever felt before. Why did my skin burn so bad? What was happening to the hair on my arm? Why was it impossible to wear any shirt more than a tank top without it feeling like I was being filleted? My wife couldn’t even touch me without me screaming. The doctors kept giving me more and more pills; the insurance company kept calling me a drug addict.

I had to go to court for Workers Compensation to approve anything the doctors wanted to do to help me. Workers Compensation kept saying “No” to every test or treatment the doctors wanted to do, and then it would be months before I would get a hearing. At the hearing, the lawyer for the insurance company would say “Sorry, Judge, I forgot the paperwork.” Then they would delay it more. At one hearing, the Judge yelled at the lawyer for the insurance company “If you forget again, you will be fined $500.” because he forgot two times in a row. So that delayed things more. I then had surgery on the left shoulder, to remove scar tissue. They had a lot of trouble with the anesthesia. Right after the surgery, I knew something was really wrong, instead of better, as the pain was worse, much worse. Then the parade of other doctors began, from me wanting a second or third opinion, and the insurance company sending me to doctors to prove there was nothing wrong with me. One would say I was a drug seeker, another would say 6 weeks of therapy. Then I was sent to a doctor who specialized in pain medicine. At the time, I was taking Methadone for the pain. It was so unbearable and nothing else took the edge off, or the side effects were horrible. This pain management doctor knew almost immediately what was wrong. She started to explain RSD. It sounded like everything fit. It was odd because, after the fall, I realized that this was no longer going to be the way I could work (using my body, I mean), so I returned to college to get my degree. In my classes for the program I was taking, one of my classmates, a guy who like me was older, he had so many health problems and he was out a lot for his illness. He had RSD. He would talk a lot about it, when he was there. I admit, I thought he was faking at first. It just seemed so unreal. He did help me quite a bit in the time that I was first diagnosed.
After the RSD diagnosis, I was treated by a doctor who was very aggressive with treating my pain. He would make sure that I got whatever I needed to be comfortable. He would say “We have to cut the pain cycle and get this under control”. He gave me injections of a mixture of medicines and herbs into my shoulder, and he did it a few times a week. I was getting to a place where I could tolerate things.

But then I had a tumor on my left foot. An odd type. On the top of my foot, like where it arches, but the top. My family and I took a vacation after I graduated from college and, while we were away, my foot suddenly swelled up so bad I couldn’t tie my shoe. When we returned home, I went to see my regular doctor and they said I chipped the bone in my foot, and it looked like the chip was floating around and would probably need to be removed. My mother worked for a radiologist, so I got an immediate appointment for a bone scan. That’s when they saw it was a tumor. It wasn’t cancer, but this type turned the bone in the area to sponge and, if they left it, I would most likely have lost my foot. At the time, my wife worked with a Physical Therapist who told her that he had a friend who had a tumor that was the same kind, and he lost his leg up to the thigh. I was definitely going to get mine out now. The surgeon that was doing the surgery told me that the odds were high that I would get RSD in that foot (just from the surgery) and, since they had to remove a large chunk of bone from my foot, that would increase the odds.

I did not care; I wanted to keep my foot.

I woke up in the recovery room with that familiar burning. I knew immediately what it was. My recovery from the surgery was really hard. They did have to take a large chunk of the bone from my foot. I had to use a walker to get around. That was hard with a bad left arm. It was like all the progress with my shoulder was now gone. But the same doctor that did so much for my shoulder did the same for my foot. It was a year of meds, more meds, and shots, but I was finally in an almost total remission.

My family and I settled with Workers Compensation, moved to another state and I got a job I loved. One day, after about 3 and ½ years of almost total bliss, I re-injured my RSD arm, but I went to a doctor who started aggressive treatment right away and the RSD did not come back until I came home from work one day, six months later. Apparently, I don’t remember the next six months at all because my wife says that I came home that day, did not even come in the house, but opened the door and said “I am taking the dog for a walk.” She was cooking dinner, she said, when I came back an hour and a half later crying my eyes out because, during the walk, I got lost and couldn’t find my way home. We lived in a condo complex, you really couldn’t get lost. The dog realized something was wrong, and led me home. My wife said that after that my pain was back full force, I was unable to really speak and I couldn’t do anything at all for myself. She had to bathe me, brush my teeth and everything. She took me to doctors and everyone told her I was nuts. They even put me in a psychiatric hospital. They started the whole “he is a drug addict” thing again. Years later, at my Social Security trial, the expert witness that the Judge called explained what happened during the walk. He said the RSD decided to come back and it “short circuited” my brain. I was lucky to get much of what I lost back.

Then I started having serious issues with my heart. I would get a heart rate over 200 beats a minute. I would wake up drenched in sweat; heart racing, pounding, and my chest would feel like there was an elephant on it. My jaw would hurt and there would be a pain down my left arm. It was exactly like what you see when someone on TV is having a heart attack. But I was only 35. Other than what the RSD had done, I was in pretty good health. My wife would take me to the ER and, thinking I was having a heart attack, they would give me morphine injections. The morphine would ease the pain and slow my heart; they had to do these shots every hour when this happened. They would admit me to the hospital and give me an injection or my heart would just keep going hard and fast. My wife said that after a few of these admissions a doctor took her outside and told her I was going to die from pain induced heart damage if I did not get a pump that gave me morphine constantly. She had to fight hard to get me that pump. When I got it, it took a while but things did start to finally calm down.

That first pump was put in about eight years ago and I have had nothing really major since then. They have to be replaced every 5-6 years because of the battery life but, other than a recent mishap where I got the medicine, (instead of the pump) which put me in the ICU for a stay for observation, I have just been dealing with the pain. I have gotten to a place where I know its part of life, for the rest of it. And I do have it now in most of my body. You will almost never see me wearing anything other than nylon shorts and a tank top. But I can take a hug from my wife or kids, without wanting to scream. I had some real bad issues with my legs but, like many with RSD, everything gets pushed to that. Turns out, that my knee was so degenerated that it was causing me problems all over and a recent Synvisc injection fixed up my knee and, in turn, has done wonders all around. My pain level is down. I can’t remember the last time I felt this good, and it's odd because the incident with the pump made them cut back my rate 25%. And I don’t want it to go back up.

2. In what ways has it affected your life?

The answer to this is a book in itself. There are so many changes you couldn’t possibly touch upon them all. So I will just mention a few that stand out in my mind. The first thing I hate to talk about but I feel I have to, if I want to be honest. It’s selfish but I think normal, given the circumstances. After the “shock” wore off, the “why me?” way of thinking started, You don’t realize the amount of bitching, and moaning and moodiness, you project at the very people who have done nothing but stand by your side, fight for your treatment every step of the way, and give you love and support in spite of you not noticing it or showing appreciation. This doesn’t happen because you are a jerk, but because of the “why me, how did this happen?” and shock of it all going through your mind. We aren’t talking weeks in my case either; I am talking years of wearing RSD blinders. Lucky for me my wife's love and support did not cause her to say “goodbye”. She was strong enough to hang in there until I finally saw I was not the same person at all anymore. Like a slap in the face, I saw that I had become more of the disease than a husband and a father.

Obviously, I have been unable to do much of the physical stuff that most fathers do. Being a father of sons, I always wanted to play football and basketball with them. I was very athletic as a young man. My boys just know me really with the physical problems of RSD. I try to make it up to them in other ways. My dad who is 25 years older than me is in better physical shape than me. I hate having a handicapped sticker on my car. I try to not use it, but sometimes I have to. Once, a few years back, I had to use it when I went to the supermarket. I did not need my cane, so I left it in the car, and an older man started to yell at me. He was saying that the spot was meant for “cripples and old folks”. I wished I had my cane, because I wanted to whack him with it, and I am a very easy going guy. But stuff like that, when people are so ignorant, and hurtful, I get mad.

I hate always having to either plan everything, or cancel plans. The financial trouble that it has caused from not being able to work, and the stress it causes, really sucks. But you do the best you can.

3. Do you have a good support system?

My support system is, without a doubt, the only reason I am alive today, and that is no exaggeration, so yes.

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5. How have you reinvented yourself?

Nothing can bother me anymore, since nothing is or can be as bad as RSD.

6. Has anything good come from this trial?

Yes, somehow it has helped my wife see something in herself she couldn’t see before. She has become more confident and has tried more things and has seen the strength that she has. She has gone to school, she has started hobbies she loves, that she never has even attempted before, and I know it stems from what we have endured as a result of the RSD.

7. What things do you miss the most?

I miss activities with my family and the ability to work, doing what I actually loved to do.

8. What do you want the general public to know about you or your disease?

What I think now is not what I would have said 10 years ago, but I see its importance clearly now. Better support and understanding for those who stay close to us and help us 24/7/365, and love us with RSD. They suffer more because loving someone that is in hellish pain would have to be worse than experiencing the pain first hand. I am not the support group kind of guy. To me, talking about it, that just makes it stay alive. I want to forget it as much as I can. The pain reminds me enough that it is in my life. But I do understand why they are important for people. I think probably mostly when they first begin this whole thing. I remember how there was no place really for us to get information when I first got diagnosed. The internet was not what it was now, and the only place you could really get any information was at a doctor’s office. They don’t have the time and, even now, I see they don’t always know what is really true and what isn’t. Sad to see so many doctors that have that “Huh?" look on their face when you say RSD. I would have hoped that, after all this time I have dealt with it (very close to 18 years now), that would have changed. I am lucky to have a great primary doctor. If he doesn’t know something, he says so. He doesn’t BS me. He either finds out, or sends me to someone who does know.