It was a restless night. I tried my hardest to get sleep, but it seemed the harder I tried to sleep, the farther away it went. My back and my legs were aching, and my constant shifting in bed kept Amanda awake. There was no trying to deny what tomorrow was going to bring. The representative from the company that created my spine stimulator was going to say there was nothing she can do and I would have to have surgery again. My surgeries were almost always a year apart, but this one would be a week, a month, a few months away, depending on the doctor’s schedule. The worst feeling of all was either not having a spine stimulator after having one for over a year, or it was knowing I had a new one in but it did not work. My old device that used to take a little pain away was replaced by a brand new broken piece. Hour after hour went by as I lay in bed. Every possible outcome kept spinning in my head until it felt like a heavy piece of concrete being beaten by a sledgehammer trying to split it. I gave up and went back to my chair, my throne, my prison in the living room and waited.
As the hours crept by, I stared out the window to watch a few of the sun’s rays break over the mountain and dance their way through the sliding glass door into the living room and stop a few feet away from my legs. Tomorrow finally arrived.
I may have gotten an hour or so rest, but I felt incredibly worn down. It was not even 24 hours ago, that I had my 9th surgery . . . and instead of resting to recover, I had a meeting set up in a few hours to determine what went wrong and why my device was not responding. I peeled myself out of my seat and went to the bedroom to change into newer sweat pants and a very large, yet comfortable shirt that would not brush up against my incision. After Amanda woke, it was time to prepare ourselves for our meeting and whatever conclusion the company could come to.
We met with the representative early in the morning. If there was a plus side to anything, it was the fact that she was kind, apologetic, and intelligent. As she walked up to us, I shook her hand and said, “Thanks for meeting with us so soon. Look, I had a Ford Pinto in my back that could barely make it up the hill and you replaced it with a Ferrari that is stuck in the garage needing to be fixed.” She smiled and said that was a good analogy.
She went on to explain that she had never seen this occur before. Out of all tests subjects and new patients that received this device, never had this happened to them. I just smiled back and told her I am the king of “We have never seen this before and I do not know why this happened.” I told her if something were going to go wrong it would when it comes to me. I am just surprised it happened this fast.
She performed a few tests on me with her “master” device – a device that talked to the stimulator in my back to let her know how it was “feeling”. It was no surprise when it turned out that it “felt” just like I did. Broken.
She did not receive any signals telling her the stimulator was connected to my spine. She stated that either a wire became lose, a connector was bad, or the whole device was defective. She apologized again as she packed up her things, and informed us she will get in touch with my doctor again and let me know what to do next. She said they were going to have to perform surgery again.
It was right after this statement a whirlwind of events happened. I can honestly say it was the first time in a very long while I was truly impressed with a surgeon and a company representative.
What happened next was phenomenal . . . exhausting, but phenomenal just the same.
Within an hour after our meeting ended, we received a call from the doctor’s office. They instructed us to come right away to see my surgeon. I was stunned that an appointment was made so fast. Needless to say, I gingerly got into the passenger seat of our SUV and Amanda headed toward his office.
After accepting a few apologies from the admission staff, we were quickly given a room to wait for the surgeon. It did not take long for him to come in and offer another apology. He also stated that he never had seen this before and I retorted back that I am the king of “I have never seen this before”. Amanda chimed in from her seat and said, “Trust me, he is.”
The surgeon went over possibilities of why the device was not working – a bad lead, a bad wire, a bad battery. The worst case scenario would be that he would have to cut down the middle of my back through the old scar tissue and replace the leads, wires, and device. When I heard that, I looked up at him and said, “It will be that one, the worst case scenario. You can start out small by checking the battery and such, but in the end it will be the worst case scenario and I will have to suffer through the pain of having an incision down my back next to my spine.” He tried to assure me by saying we will start out small and hopefully fix it, if not we will keep going bigger and bigger until we find the problem.
I left the appointment shocked and worried. I knew the pain I was going to face if he had to do an incision down my back and another one on the right hand side of my lower back. That was what worried me. What shocked me is when he told me he wanted to do the surgery as soon as possible, and that was the next day! I was stunned that I was going to have two back surgeries almost back-to-back. I couldn’t believe the speed at which both of them worked. Monday surgery, Tuesday a meeting with the representative and then the doctor, and Wednesday surgery. I thought I was going to have to wait months, not less than 24 hours!
Tuesday night I took a sleeping pill and I was able to get at least 4 hours of sleep. When Amanda awoke it was time to get ready to go back to the hospital. All of the usual things were done when we arrived, from check-in, to talking to staff members, and signing my right away to sue (at least I think that is was.) The only difference was instead of receiving local anesthesia during which I felt like I was burning up under the heated blanket, I had to have general anesthesia, which was fine by me.
After being placed under general anesthesia it is difficult to remember what happened a few hours after you awake. The only thing I remembered is the representative approaching my bed telling Amanda and me that I do have the worst luck, and that they had to replace the wires and leads. Something went wrong with the old wires they were trying to use on the new device. Something that they had done 1,000x over. She said this time, it looked like a success.
I lay back down in the hospital bed until late that night when I was allowed to leave with Amanda and to go back home and sleep. I was pleased the unit was working as it should now, and I turned to Amanda as she was driving up the highway and said, “See, I told you and them, it would be the worst case scenario.”
I’ve been taking it easy since then recovering. I am pleased to say that after a few weeks went by I made adjustments to the stimulator that do help out with the pain. I do not think anything will take away the pain in its entirety, but any help is better than none. Also, this device gives me a lot more options than my previous one. Best of all, it’s wireless! The old one had a wire attached to a pad that connected to the battery in my back.
I still hope to do other entries as far as product reviews or tips on dealing with insurance companies, but we are now caught up with all my procedures and tests.
Thanks, everyone. Please share my blog if you think anyone can benefit from reading my experiences.
Most of the blog entries I have written were stories about my life. The entries covered the events, adversities, and obstacles that I faced throughout my journey. In this entry I want to talk about the emotion of having hope. I want tell about the emotion of hope and disappointment and the tug of war battle that has plagued my mind since my story started almost nine years ago.
It took over a year for me to summarize the last nine years of my story in my blog. I want you to stop reading this and take a minute and think of all of the events in your life that have taken place over the last nine years. I know many people have had children, changed jobs, bought a house, moved out on their own for the first time, gotten married, and even gotten a divorce. I want you to think about all of the events and all of the times you had hope, happiness, and sadness.
In the last nine years, I had one dominant thought in my brain. One emotion throughout all of the years in my 30’s. That thought was: Hope. I was hoping to find a cure. I was hoping that eight surgeries would give me relief. I was hoping when the doctors told me during the first four surgeries that I would be 100% afterwards, that I would be.
I had a lot of experiences during that time. I went on trips, embraced new friends in my life, even a few recently that live overseas in the UK. However, during all of these events my hope dominated my feelings. I used my hope and determination to squash the disappointment of the results I bore. The disappointment of learning the doctors were wrong.
I battled time and time again to increase my strength in my legs, feet, and back in order to walk without pain. A year would pass between surgeries until I would know if I was healed or not. After each of the four recovery years I carried the weight of being disappointed when I felt the pain coming back stronger and stronger each time. Hope helped me push back the weight of disappointment when the next four surgeries failed even though I knew they had a lower percentage of chance of helping me.
It was hope that kept me going when I would have good days – days where the pain was a lot less.
Days where I could do things and feel that I was getting better gave me more hope. That was until the next day in which my body would scream at me from the inside because I had pushed myself too much during those good periods. Days when I succumbed to the pain and lay on the floor for a week in hope of getting rid of the pain that gripped my body. It was during those days that hope of getting better started to flicker out of my life.
It took months of struggling with myself to adjust my thought process, and help from my friends to redirect what I should be hoping for. Instead of hoping for a cure, I learned to appreciate the good days. Instead of becoming depressed when my good days ended and were followed by bad days recovering from over-activity, I learned to enjoy the days where the pain was less. I did not push myself harder on the good days. I stuck to the same routine and relished the fact that that day was almost a pain-free day and I hoped that I could have more of them.
If I did not adjust my outlook on life and change my goal, I knew I would be battling disappointment the rest of my life. Over the last few months I became resigned to my situation. I survived through the horrific days, I cherished the days where the pain was less and I kept hoping that life would stay about the same and not get worse. It was not much of a life, being in a lot of pain everyday. But it was the best my friends and family, doctors and I had to offer . . . so I decided to make the best of it.
Months passed where each day felt like the film Ground Hog Day, and that was fine. No more surprises! I preferred that after years of not knowing how I was going to feel or how my body was going to end up after surgery. Days without surprises and keeping my hope in check were just what I mentally needed. I felt resigned even though there were days I had crippling pain overwhelming my whole body.
Tolerating my situation lasted a decent amount of time. That was until two days ago. I was lying on the floor for pain relief, and turned on the news. On ABC 27 they stated they were having a special in a half hour that would cover a new procedure. A new procedure for people with Complex Regional Pain Syndrome! A new spinal implant procedure for people with this condition that had leg pain or ankle pain from multiple fractures!! It was as if they pulled my medical record out, were reading it, and sharing how the new procedure could help me. I had never seen anything on TV about my condition let alone a new procedure. I turned to Amanda who was sitting on the couch, and pointing to the TV like a kid pointing at a new toy being advertised for Christmas, I yelled, “I need that! One please! Crack my back open, connect wires to my brain, I don’t care – give it to me!” Even Amanda was impressed by it, which is not easy to do, and stated, “This might really help you.”
The news program was offering a phone number and an email address that people could use to contact the doctors. I instantly grabbed my phone and wrote a page about my condition. It took less than ten minutes for them to get back to me stating that they could help me.
At that moment fireworks were exploding inside of me. My feeling resolved once again bloomed to having hope of a cure. It was the first time in a very long while I was completely happy and looking forward to the future instead of hoping for the next day to be less pain-filled.
The following day Amanda called their office and secured an appointment for the 6th of February to talk to them about this new procedure. She then called me, during a break from work, to let me know the date of the appointment and told me to let my dad know, knowing he would want to be there too. I started having instant regret letting my emotions rise and having hope once more.
As I sit here typing this, once again I am excited for the future. I did not want to set myself up for disappointment. One of my close friends in Virginia played devil’s advocate, saying the procedure might not be approved or good for me. She asked, “What if it makes you worse? What if the pain is unbearable like last time?” Her questions were on point. However, I could only answer with excitement. I rattled back, “At this point let them cut me up and keep trying. Something has to be better than this. I don’t care, I have to try it!”
After spending months and months retraining my brain to adjust my expectations, I am setting myself up for another huge case of disappointment. It was something I did not want to go through again. I did not know if I could survive going through it again. For the first time, Hope has me scared, and I wish I did not feel it.
I would love to know your thoughts. I would love for you to respond to me in the comments section. Would you have hope, if so would you keep it in check? How would you keep it in check? Would you take the risk of setting yourself up to be hurt and in pain even more after finally accepting your condition? I am going for it, would you?
The temporary spinal simulator implant was taken out and what followed was close to a month’s worth of intense pain. The pain in my legs persisted and the burning, squeezing, and thumping pain in my back echoed throughout my body as I lay on the floor waiting for the permanent implant. The doctors warned multiple times the implant would be stronger, but my body might get used to it and the effect of the implant may decrease, or even start at only 40% – 60% of pain relief. I knew there was no chance of 100%, but as I lay on the floor drenched in pain sweat, I knew 100% pain was getting to be too much to handle. Contemplating living the rest of my life with this was becoming a dark cloud over my existence. I started looking at the clock as a slow timer counting down my days I had left. Days left in this world of torment or until my permanent spine implant would be placed I am not sure, but it was more likely both.
Amanda and my parents took over almost all of my duties around the house. I could no longer stand or cook. I tried making eggs for breakfast one time letting Amanda sleep in on a day off, but my body would not let me stand by the stove for 10 minutes. I remember looking down at the pan, distraught, and felt the emptiness of failure as I tipped the pan towards the trash can and took my place on the floor by the television. I somehow managed to get by letting the days and nights slip away as I marked them off on the calendar. Though just a few weeks, maybe a month had passed, it was the longest time of my life. Going from the feeling of relief from the temporary implant, to being thrust right back into pain upon it’s removal was too much for anyone to bear. The only solace I found was lying on the floor watching the colors dim in front of my eyes and falling into a nap brought on by my pain pills.
I struggled and fought through the days that remained. Amanda reassured me that it will be better soon, my parents kept me company when she was at work, and my sister took time out of her busy day to visit when she could. My friends from Virginia and close to home took on the burden of letting me vent on a daily basis and Ms. S tried to visit on a regular basis. They all took it as normal as I Iay on the floor when they visited. Not one made me feel uncomfortable as I lay on the floor looking up at them on the couch. It was the warmth from them that helped me get through this dark and desperate time.
As all hope of finding relief from the crippling pain was being extinguished, the day finally arrived for my permanent implant. It might have been a rush of adrenaline or the excitement of relief, but I was up, dressed in sweat pants and a loose shirt, and was ready to head out the door first thing in the morning. Amanda and I arrived at the hospital and I was immediately called back. I had told my other family members that they did not have to come as the procedure would not take that long. I was excited and relieved to get the surgery underway. As the routine began for pre-surgery I met with the doctors lying in bed with an IV in me. Each of them went over the surgery and what they were responsible for. It was like the movie Groundhog Day. Through surgeries 1 to 8 no matter what hospital, it was all the same. It was a relief knowing the pre-op process was uniform in all the hospitals in which I had been a patient, which soothed my nerves. In fact it was that I was more impatient to get the procedure underway than I was worried about anything going wrong. Heck, at this point surgery was more routine than going to the dentist for a filling.
After an hour had passed, lying in the pre-surgery room, I gave Amanda a kiss and told her I would be back in a snap. As the nurse wheeled me off, I turned my head and told the nurse as I had many others before her, “When you put me to sleep just do it and do not let me know.”
True to the request, the next moment I found myself struggling against the weight of my eyes to open them up. It was like being in a deep sleep and having someone trying to shake me awake. Before I could even open my eyes I heard a woman to my left ask “Do you feel this in your leg?”
As the question was being processed in my woozy head a sensation of pure bliss entered my body. I felt electricity throughout my leg. The sensation was the feeling of tiny little hands shaking and massaging my legs interrupting the pain. It was finally over, the waiting was done, I had my implant.
Feeling this warm sensation I fell back to sleep. My next coherent memory was finding myself back in my chair with a familiar remote in my hand that connected to an antenna in my spine. Off to my left, sat the most supportive woman in the world: my wife Amanda. She smiled and welcomed me back into the world of living. She told me they had tested both of my legs and my back. She said I was out of it, but was able to respond to questions. I told her I did not remember anything except feeling the first surge of electricity coursing through my body.
Back at home, I rested the remainder of the day into the next. Amanda told me most people do not have a lot of pain after the surgery. It seemed to be true as I was not having too much pain certainly with the pulsing sensation rippling through my body provided by my implant. At least that was until I tried to get up to go to the bathroom. I put my arms on the arm rest of the chair to lift up and out of my molded seat on it. What came next was the feeling of a knife slashing cuts across my back. I howled in pain with such force that it seemed to lift Amanda off the chair and push her in front of me.
“What’s wrong? Are you OK?”
“I can’t get up. I can’t get up, my back it’s ripping! I have to pee!!”
“Here hold on to my arm and lift.”
White light entered my head as I succumbed to the pain. I fell back into the chair, sweating and panting, pleading to her that I couldn’t. What the hell is wrong, I thought. It wasn’t suppose to hurt.
Without a question, Amanda called Dad, explained the situation, and asked him to come over. Fortunately, my parents live only a street behind us. Within minutes my dad was through the door and at my side lifting me by placing his arm underneath mine.
I do not remember making it to the bathroom, I do remember being drenched in sweat and the feeling of my back being stuck against the back of my chair. It was as if my body moved forward, but my skin was stretching all the way down the hall – still attached to the back of the chair. Something I have only seen in a Nightmare on Elm Street movie.
The pain was caused by two big incisions in my back. One for the electrode that was soldered onto my nerves in my spine, the other was for the box that controlled the input from the remote to the electrode. The scars were long and deep. I still have them today which as I write this, is a few months later. Any doctor or nurse who could say the pain would be minimal is a doctor or nurse who never went through it. Amanda and my parents had to come over and watch me at all times to help me lift myself out of the chair so I could go to the restroom. I broke out in pain sweats each time, but I had no choice but to press on. It took three weeks before I regained the freedom of lifting myself out of the chair without the feeling of my flesh being ripped from my back.
As I healed, I learned how to use the remote to the fullest potential. It really helped with the pain in my back and legs, but as each week passed I noticed my old friend coming back again.
Pain. Pain was my old friend. It would not leave me, I could not hide, it would not give up being with me. It refused to leave. It would press through the electricity, it would jump over the waves of pain pills that tried to suppress it, it would stop at nothing to be with me. Out of all the loyal things that surrounded me in my life, Pain was one friend I could always count on to be there.
The implant worked and it helped, but just months after receiving it, Pain, my friend, found a way through it to join me. It did not take long to find myself on the floor again and Pain was there – enveloping me and tormenting me with its claws.
The electricity from the implant flowed through my body like a sword that fights Pain to this day. It is a war between good and evil that battles inside me . There are days where light overcomes darkness and there are others where darkness conquers all. I know without my implant, darkness would be victorious everyday as the pills were never strong enough by themselves. As we near present time, I had a few days that were so bad I called and pleaded with my doctors for help. To me it got to the point where my doctors seemed helpless. One increased my dosage of one pill, another encouraged going to see my pain doctor, and my neurologist had one idea left in him – and that was to prescribe another nerve medication called Trizanidine.
I have been on the new medication for two weeks now. I am pleased to say Trizanidine is the glue coupled with my other medication that has created a shield to go along with my electric sword. It has provided me protection from the worst of the back pain and although it has not defeated pain, for the first time it has held it at bay and stopped its progression. I still have very bad days, and I find myself on the floor most days stretched out, but this new concoction of drugs plus my implant gave me enough arsenal to keep fighting.
I have scheduled next month to have all new doctors look at me. I have put the last year of medical records and radiology images in a three ring binder with tabs separating the body parts that were tested. I am hoping to find a doctor that has another option besides pills. The pills make me drowsy, fatigued, dizzy, and incoherent at times. I was able to get off one of my pills with the introduction of Trizanidine, but I know without the others I would lose the fight. For the first time, I found a doctor that specializes in Complex Regional Pain Syndrome. I have hope once again as I fight with the support of family and friends to regain my freedom from my darkest friend that resides in me: PAIN
It took over a year to tell my story. I will continue to tell it as my life goes on. I still have hope to be relieved from this torment. When I started this journey I had all the hopes in the world that I would be cured by now. Certainly when I learned about the implant. I was determined to end my blog on the highest note possible with a cure. It wasn’t until only a month or so ago I learned that my blog would not end that way. Instead it ends with hope. The second best ending that I could ask for.
I want to thank my family and friends that gave me support on this journey. Amanda has been the strongest ally in my fight next to my parents and close friends, which I am lucky enough to say includes a lot of people. I am hoping you guys know who you are. I also want to thank my readers and those that will continue on my journey with me.
Your support will give me the strength not to give up and the motivation to continue fighting!
From here I will finally be able to expand my blog. I plan on writing reviews about medical equipment, educate readers on insurance and benefits, and continue to spread my knowledge and hope to others. I started this blog to help pay it forward. I want to share a little insight with people who might be going to a test for their first time, having a surgery for the first time, or dealing with chronic pain the first time, on what they might be able to expect and to let them know they are not alone.
Thank you everyone for making this possible and the next entry will be soon!
The meeting was over, the fighting was done, the battle of wills was coming to an end. If you remember I was told by the spine doctor that the back shots may take up to three times to feel better. He insisted not to give up after the first one and that my legs should feel better, too. However, the pain manager stated that the shots could and hopefully would help my back but were going to do nothing for my legs. He even had doubts that I had Complex Regional Pain Syndrome, even though I could barely have wind touch my legs without sending off pain signals to my head like daggers stabbing me all over. Almost everywhere I went, regardless of temperature outside, I had to wear a blanket over my legs.
It mattered not, I was just happy to have the first set of back shots. A very simple procedure, I lay on my stomach, the doctor disinfected my back with wipes, and after two minor aches on each side of my spine it was done. He completed putting fluid between my arthritic L4 and L5 vertebrae in a matter of minutes.
Afterwards the first set of shots hurt a lot. The bottom of my back turned black and blue. However, after a few days of lying on and stomach, my back was starting to feel better. I actually couldn’t believe it and thought the feeling better was just a figment of my imagination. If this is how the first set of shots felt I couldn’t wait for the rest.
I remember standing in the kitchen washing dishes the first and second week after the minor procedure, not feeling any pain. I almost felt young again. My legs still hurt, just like he said, but I could bend and stretch. I had some movement back. I marked on the calendar three months from the day for my next set. I was told it was safe to have three sets of injections in a six-month period. I am not sure why that is, maybe build up of the medicine in the back, but neither the doctor nor the insurance company approved more than 3. I also read on Google that was the maximum amount of this medicine I could have.
As the second week turned into the third week I felt so much better. I couldn’t believe the relief I had. Something after all these years worked. Sure the pain still was going through my feet and my ankle felt weaker, but my back felt stronger than ever. I was able to do house chores to help Amanda again and even play my guitar a little bit. It was bliss.
I thought the solution was found. However by the end of the third week, much like how my ankle felt after each surgery, I felt the slightest jab of pain go through my back while standing at the sink cleaning up after a dinner I made for Amanda.
I disregarded the sensation, thinking maybe I was doing too much and decided to rest the next few days. As the fourth week went by, I found myself resting on the floor more and more. The floor provided a hard, but comfortable surface. I tried not to get too anxious, but the jabbing lightening sensation was returning. I still had a month to go before my next shot. I was not deterred though. I had a whole month of relief from the first shot, imagine what the second and the third will give me!
As the weeks went by, I felt discomfort once again forming in my lower back. I could no longer do the extra house work or prepare any dinners. However, the second shot was only a little bit away. The best part of it all was that the future shots were pre-approved, so I did not have to call the insurance company.
By the third month, I found myself back in the office, explaining to the pain manager I had experienced a month of relief, but I eventually felt just as bad as I had before getting the first shot. He stated the way I felt shouldn’t have degraded that far, but he was willing to do a second. The second procedure was done very much like the first. The only difference was that I had no pain from the injections this time.
Much like the first time, I felt great again. I tried to do a little less, but the whole point of getting these shots, was getting back to a normal life. I once again found enjoyment in my little bit of renewed freedom. Being able to do things for myself felt like the chains of disability were broken once again. I had all the expectations in the world that this was going to work.
My enthusiasm only lasted a week. By the second week, I found myself back on the floor for longer periods of time, until I was stuck there again. The chains of disability were wrapped around me once more, secured by a lock whose key had been thrown away.
I was so close this time, I remember thinking. It actually helped for a little while. Some relief was better than none was it not? Even though the relief had only lasted a week, maybe the benefits of the third shot would last longer? However, that shot would only be allowed more than two months later. My only choice was putting my tens unit back on and managing until then.
I coped with my situation the best I could. All I could think of is another procedure and another failure. However, there was something inside me that said, do not give up hope, and keep trying. I called it my dad’s determination. A determination that forbids giving up that he taught me long ago. So, I resolved to wait until my next appointment to come up with a new plan or continue with this one.
The streaking of pain that went up and down my back, around my legs, through my feet, was becoming almost unbearable. In the meantime, my neurologist put me on more pills like Lyrica and Cymbalta to help with the pain. My pain manager increased my dose of Backlofen and Oxycodone at least until a solution was found. This started the interval of my life I liked to call the zombie period.
I was feeling so medicated that I became a zombie. I felt very dizzy and very sleepy. However, the feeling of dizziness and falling asleep was a much better alternative than lying in pain all day. My short term memory almost ceased to exist. Amanda had to keep repeating herself throughout the weeks, to remind me of stuff. We downloaded a calendar on our phones to share appointments, events, and her work schedule, so I knew what was happening that day. She also bought a pill container that she filled with my medication each day, that included compartments for morning, noon, and night. She had to do this because I was forgetting if I took my pills and at times I was taking double doses or missing doses completely. Each day ran into the next, and the only thing that was important to me was what was on the calendar that day. I never knew what day it was. I just knew if there was anything highlighted in blue, that noted something was happening that day. The most important thing was, the pain was being dulled. I was drugged, but the pain was less. It was then I realized how people could get hooked on pills. Yet again, I was determined not to become addicted, and to only take what was prescribed – even if the relief wore off and the pain returned before my next dose.
Two months passed, which seemed like a year – or maybe an hour. I’m not sure. I only knew I was sitting back in the doctor’s office explaining to him that the second shot only lasted a week. He then stated that he was not going to do a third as there was no point. The third would not help. He added that normally the next step would be to burn off the ends of my nerves. However, he was convinced that my nerves were not getting pinched by my arthritic spine or bulging disks, even though my pain manager disagreed. I remember sitting there wishing one doctor would agree with another. I would have found that amazing. I had experts not agreeing with each other and the only thing in the balance was my well-being. However, trying to get them to talk to each other was like a forbidden ritual in the medical world. At least so it seemed to me.
He presented one last alternative. This type of procedure had a 60% chance of relieving some of the pain. A procedure called a spine simulator. He stated that he could implant a temporary spine simulator that would be placed on top of my back with wires going down to my hip. I would wear it for a few days and if I liked it, they would schedule a procedure with another surgeon to implant a permanent one in my spine that would be placed under the skin. He said this is the best next step since a tens unit did provide some relief for me. He continued to explain the procedure. I looked over towards Amanda to make sure she was paying attention, so she could summarize it for me. But as soon as he said there was another option to help my pain, my mind drifted to an image of Rocky training by running up the mountain, not giving up, striving to reach the top and achieve his goal. His goal was to avenge Apollo’s death. Mine was to avenge the pummeling I endured from the pain that stormed through my body and had taken control of my life. With another chance of relief, the gloves were on and I was ready for the next round in the fight against my pain.
I was not going to write anything this time in my afterword section. The article speaks for itself. I just wanted to once again thank my readers and let them know that nothing I write is exaggerated. The pain, process or the way I felt. I also want to reiterate what my goal is. My goal is to have one person learn from my experiences. From fighting for their right for treatment to knowing that feeling nervous about a first surgery is normal. As my mentor, friend, and a person I respect as much as my dad Brad G. told me. If I could write a blog that helped one person, than I paid it forward. So, I have been typing for a year hoping that will come true.
A note from myself before I begin:
I honestly believe that even though I went through 6 surgeries, countless months maybe even years of physical therapy, and complete disappointment that none of the surgeries worked, this is where the true fight and horror of my disease begins and continues. Almost to the point I was going to stop this blog. I hold onto my strength and the people that are left around me, although few, to continue to tell my story. (warning profanity ahead):
You may recall from a previous entry, that I had to battle with my endocrinologist to have him prescribe a brain MRI last year. His main complaint was: The results showed there was an issue, but he honestly believed that my insurance company would not approve the MRI. I argued with him to prescribe it and told him I will take care of them. He snickered and said okay and wished me luck. Within a few days of making phone calls to them. I had the MRI approved. It honestly did not take much. The results were surprising. He stated only 5% of the people will have an issue with the pituitary gland. I scolded back that with my Donnangelo luck, if there were a 5% chance something bad were going to happen, it was 100% chance it would happen to me. It did. I had a non-cancerous very small 2 mm tumor on my gland. However, they could only watch it because it was too small. It has to be 10 mm before anything can be done.
A year has passed since then in my story. I now sat in the same office. However, this time my endocrinologist agreed immediately to prescribe the MRI. I am not sure if it was to see if the tumor grew, because he stated he doubted that it did, or he knew I was going to fight until I got my way. I was not concerned about getting approval because it was approved last year. As the appointment ended he handed me the script after going over my new blood tests confirming that signals from my pituitary gland were still not “firing”
When I got home I told Amanda that he did not have any issues this time and he must have learned his lesson from last. Amanda laughed and said, “Probably.” She then asked about my pain level. I told her the pain from my ankle had gone up my right leg and started to go into my left leg, and I could start feeling it in my back. It was not too bad, but at times it seemed that it was getting worse. One thing for sure, with no explanation at all, it was starting to spread over my lower body.
A few days passed with nothing to mention, until the mail came about 5 days later. I could not schedule the MRI until the approval was given by my insurance. I knew it was going to take a few days so I did not worry about it, I just concentrated on keeping my pain levels down on the least medication as possible. But it was getting harder to keep below or at my minimum recommended dosage of opioids.
I opened the letter, expecting to find the approval, so I could schedule the appointment. However, for the first time, the doctors who told me that the insurance company would not approve procedures as easily as my previous insurance company were proved right. I received a denial of treatment for my MRI. They thought it was not medically necessary. In an instant my pain was gone, because for the moment disbelief and rage filled my body. Who were they to deny what an expert thought I should have? I already have a tumor. I need to see if it got bigger. How a company can be so ignorant is beyond me, I thought. What was their thought process, how can they make this decision, just how incompetent were they? This is a follow-up MRI of a tumor that already exists!
One thing I miss, is the old phones. The ones that hung from your wall that were heavy that you could pick up the receiver and slam it down to hang up when you were mad. All I had now was a cell phone, where you pressed a button to hang up and if you slammed it down, you would probably break it. If it was back then the phone would have taken a murderous beating. I called the member service line. They were no help and told me that coverage was denied. I told them, “No shit. That is what the letter says. Fine, if you’re not going to help me I will do this my way.” I slammed the phone down in my head, but in actuality I pressed the disconnect button, the feeling just wasn’t the same as the old phones were.
While reeling from the contents of the letter I noticed that it stated on the other side that I had the right to appeal and to call the number on the back after writing a letter explaining why I thought it should be approved. I had the “right” I thought. You’re damn right I had the right. We are talking about my brain, and as far as I knew they were not using theirs.
I called the phone number on the back. A lady picked up the phone and transferred me to their appeals department where I would be assigned a case manager. Boy do I pity them I thought, while I was waiting for them to pick up. After only a few rings a lady picked up, and with a calming tone asked, “How can I help you?”
Calming tone or not, I was not in a good mood. I was leaning against a railing outside on my deck, so I would not waken my wife who was asleep, or scare one of our cats that is very skittish. I stated, “You can help me by telling your company to get their heads out of their asses and approve my MRI.”
“Ok sir, I can see you’re upset (really, her perception was amazing), let me look up your file.”
I gave her all the information she needed, but as she typed on her computer, I continued my tirade. I lost it. All the disappointing surgeries, lack of recovery, and multiple diagnoses that I had experienced culminated into an explosion over the phone.
“They have to be either the greediest, dumbest, or most incompetent company to make this decision. How the hell can they tell me I do not need a procedure, when the doctor who knows me much better says I do? Do you fucking think for one tenth of a second, I am going to let them get away with this?”
“Mr. Donnangelo it looks like it was denied due to medical necessity. I need you to write a note…” I interrupted, “I already have a letter written, give me your email address and let’s get this approved ASAP!” as the fury inside me was still building up to maximum level.
She gave me her email, and stated that though it was Friday, she hopes she can get it overturned by Monday.
“Who? Who overturns it?” I asked.
“Our medical managers”, she responded.
“Put them on the phone.” I harped back.
“They do not take phone calls, sir.” Still in her calming voice.
“They don’t take phone calls? THEY DON’T TAKE PHONE CALLS!,” I yelled. “Who are they not to take phone calls, the Pope? Do I need to kiss their ring? I have a tumor, I need to know if it got bigger. My doctor sent you those documents. Imagine the lawsuit if you do not approve it and my tumor got bigger.”
“Oh, you know you have a tumor, and this is a follow up? Sir, to be honest we do not even give the first approval. It goes to a separate company. They actually do not look at your file or prior records,” she responded.
My frustration changed to shock. “Are you fucking telling me that you have another company who does not know me, but denies my claim without doing their due diligence of finding out why I need the procedure?”
“Well that is why we offer the appeal”, she answered back.
“An appeal! You shouldn’t have to appeal! I never in my life had to appeal until I received your insurance. Actually, I never had to call my insurance company until I got your insurance. The doctors were right. I felt that the insurance company was stingy and has major issues approving things. All you’re hoping for is that people like the uninformed or senior citizens will see their denials and accept them, instead of fighting. Well let me tell you, you met your match today. I’m disabled and basically retired. I have all the time in the world to fight this.”
“Well Mr. Donnangelo I am sorry you feel this way. We just wants to make sure you are getting the correct treatment you need.”
“What? No. My doctor knows the treatment I need. I feel you are trying to save a buck for your bonuses at the end of the year. Look, I am tired, you guys pissed me off. You better have good news for me Monday.”
She thanked me for the phone call (yeah, right) and hung up. I had to admit to myself that she was an outstanding middle person. She took my tirade in stride. A tirade she probably gets all too often.
I had no choice, but to wait. During the weekend, my back started to hurt really badly. I left a message for my Internist to ask to get an MRI approved for my back. There had to be something wrong. I could barely move or get off the floor and my stress level was had been pretty low during the weekend, besides the increase in pain.
Those two days passed and I received a call from my appeal’s coordinator.
“Mr. Donnangelo I have some good news. I went over your file with my medical manager and they saw that this truly was a follow-up and approved your MRI. They could not explain why it was not approved from the beginning.”
“I told her that if they done their due diligence of reading my doctor’s notes they would not have had to stress me out all weekend on top of the pain I am going through. I also told them I knew why they were denying their members medical services, something Blue Cross, my previous insurance, never did.”
I thanked her and hung up, so I could schedule my MRI right away. A few days passed, I arrived at the facility and went through the MRI process. After another week, I was back in my endocrinologist’s office. He told me that my tumor had doubled in size to 4 mm, and I now have a second one.
I told him about the issue I had struggling to get coverage for my MRI and asked him, “Now what if we did not know it grew double in size? Something you said probably wouldn’t happen.” He stated we still had to keep an eye out for it to make sure it does not hit 10 mm. Once it does I need surgery and could possibly have issues with my vision or lose my sight.
I replied, “Great, just what I need, I told you nothing good happens”, as I got up off the chair and left before the appointment was over.
It was around this time that I started to end appointments abruptly when I felt like it or had enough of bad news.
I went back home and told Amanda what was going on. She was concerned, but we had no choice but to wait and continue to take the hormone replacement medicine. I told her, “Imagine if my insurance said no and I paid for the MRI outright, with these results showing the tumor doubled in size and now has a friend beside it. What would happen is, by the time I was done with them I would have owned them. I should have never had to go through the stress of Friday and throughout the weekend.” As I lay on the floor, seeking some relief by assuming the only position that calmed some of my back and lower leg pain, I asked her, “By the way, did the doctor call back about my MRI for my back?”
“No, does it surprise you?” she stated in an exasperated voice.
“No. Are you serious… that’s fucking it! I am sick of these doctors not doing their jobs. Give me the phone…”
I was truly stressed out and was and still am in serious pain. Having someone trying to block my health care was unacceptable. And all my frustration during those six years was starting to boil over.
What I want the reader to take away from this entry is, do not let a company dictate your health care under any circumstances. Be your own advocate and fight for what you believe in.
You only have one life, you need to live it to your fullest. If you believe that there is a procedure that may help you, do not stop at a denial. Fight it!
In upcoming entries you will see how more mistakes led to a sit-down face to face conversation with one of their vice presidents. It was most interesting what he had to say without realizing it.
I was nervous about my first appointment. I was not sure what to expect. No one really told me about this service, so I had no idea what we would do to get started. The only thought I had in mind is that I would learn the lessons fast, so I did not have to spend even more money on them than what I already planned to. Delete to All I knew at the time is that it felt good to know that my money was going toward something that would help me regain freedom. I had dumped a lot of money into surgeries that did not work, but this time I knew it was going toward something I knew would be successful.
Right on time at 8 am, the door bell rang and I invited in my instructor. After a few pleasantries, we got to work right away. The first part was the $800 evaluation. The evaluation consisted of simple math problems, cognitive responses to questions, memory assessments, coordination testing, and visual testing. I understood the reasoning behind the tests. It was to ensure that people who could not see properly or think coherently, would not be driving on the road. The company not only dealt with disabled people, they also dealt with people who suffered brain trauma, and they needed to make sure they were able to pass the simplest tasks. However, I knew that I was okay and I could feel the money sliding out of my pocket for nothing.
After a quick assessment and review of my results, we were ready to go practice. The instructor drove us to a vacant parking lot that was close to home to start the training. She went over the three major car parts that were involved in driving with hand controls. The first was the pedal block. It was a piece that attached to the floor of the car that blocked the gas and the brake pedal. This provided a blockade for your foot, so it does not accidentally hit the gas or the brake pedal while the car was in motion. The second was the steering knob. The steering knob is a round knob about two to three inches in diameter that is connected at 1 o’clock in the steering wheel. This bulb was to be used by your right hand to steer the car. On the left side, toward the driver window was a bar that stuck out from the steering wheel. Pushing this bar towards you with your left wrist was acceleration and pushing it down toward the floor board was the brake. It was as simple as that. I just had to get used to the controls and their response time.
It had been a very long time since I drove at all. It felt that some of the chains connected to me and my chair were breaking. I started slowly in the parking lot, making stops, starts, right, and left turns. Playing video games for years must have paid off because the instructor stated that I was the quickest learner that she ever had. She was so confident in my ability that she let me drive on the road and then out on the highway. I did very well, only mistaking the push down for brake for acceleration. After two hours passed, we arrived home. I thanked her and told her it felt good to get behind the wheel. She stated it would only need to take one more lesson before I was ready to test with Penn Dot to obtain my credentials for driving a vehicle with modifications. I was thrilled comma and Amanda was happy with the enthusiasm I showed toward the whole program.
The next day I had to learn how to parallel park. This scared me. I had never learned how to do it properly in the past. I flunked twice on my original driving exam, but the examiner gave my license to me anyway.
I waited in the car in the same empty parking lot by my house while the instructor set up cones to simulate a parking spot. After she was done she joined me back in the car. I think she sensed my nervousness, and told me she would work with me until I got it right, even if I needed to add another lesson.
After an hour of pulling forward and backing up, I was becoming very agitated. I needed to stop, we were not making any progress. I was extremely frustrated at myself. Something as simple as parallel parking was blocking me from obtaining my hand controls and freedom.
I entered my house in a very foul mood. Amanda knew that this lesson had not gone as well without asking a question, and being as smart as she is, she did not. I spent the night trying to find a tutorial video that was simple enough to understand how to park with ease. After an hour of searching I found a video from a driving instructor on YouTube that seemed to make it super simple. I was determined to try again with the new information I learned.
The next week, we were once again in the instructor car, with the cones set up. I told her,”Watch this!” I pulled up next to the cone as the instructor in the video said and backed up just a little. I then turned the wheel to the right one time and backed up until I could see the cone in the center of the window. I then followed the next step of turning the wheel all the way to the left and backed into the space while watching the back cone. Those instructions worked like a charm, and I was more than delighted. I could also see the astonishment on the instructor’s face. She asked, “How did you do that?” I told her I learned it from the video and showed her. After performing it four more times flawlessly, the lesson and training were done.
We drove to and visited Total Mobility Services. We went over everything I was going to need for my car and ordered all the parts I needed for installation. With everything in hand all that we had to wait for was the date Penn Dot would test me. The earliest option was three months later.
Life went on during those three months, nothing had changed and the only thing on my mind was completing the trial at Penn Dot and regaining some of my freedom. I couldn’t drive with a regular pedal due to complications with my right ankle, but if I could just pass this test, I would be able to drive with my hands. I was more than delighted by the thought.
The day came, and right on time the instructor was at my door. We were both excited and nervous. She stated that she believed I would pass the test. As we arrived at the testing center we put the car in line. There were only two others that were in front of me. I watched nervously out the window as I saw once one car having a lot of trouble parallel parking. Sensing my nervousness, the instructor told me, “That is not you. You know how to do it.”
After twenty minutes the examiner came to my car and the instructor left. The examiner never had seen hand controls before, which baffled me, but she stated if I could prove I could drive with them it would be good enough for her. So, with that statement the test began. I pulled up to the stop sign that was on the track and used my turn signal to make it to the area of parallel parking. It was time. I knew if I could do this, I could do the rest. I took a deep breath and followed exactly what the video showed me. I slowly pulled up, then pulled back a little from the cone. I whipped the steering wheel around like I did before in the empty parking lot, and to finish, I backed up a little bit. There it was, I did it. I centered the car. I was so relieved, and I knew my instructor was, too. The examiner stated, “Well I can see you know what your doing. Let’s go out on the road. road.”
We traveled on the road for five minutes and came back to the parking lot. For the first time in a long time, nothing went wrong. Nothing went wrong. I repeat nothing went wrong. It was a long time since nothing had gone wrong in my life.
After finishing the test I parked and we went inside to fill out the necessary paperwork to place the hand control restriction on my license. Both the instructor and I felt jubilant. I looked at her with sincerity and stated, “Thank you for giving me some of my freedom back.”
With those words we went home, and within the next two weeks the controls were installed on my car.
I would like the reader to take away from this entry about getting over your nervousness or doubts. I pushed off the hand controls for a long time because I thought I was going to get better. Once I realized I was not I doubted that I could pass the test again considering I never did. The only thing we can do is to keep pushing forward and try to regain our freedom that the obstacles in our life take away.
I was truly excited to get the hand controls. It meant that I did not have to depend on everyone driving me everywhere due to my right ankle being in pain all the time. I was relieved and joyful when the controls were put on. It was worth every penny.
I know it has been a long time since I made an entry. I will explain that later . . . just know I had been going and continue to go through a hard health struggle once again. I was having serious doubts about continuing this blog. I wanted to end this blog on a high note. Now I do not know if I can. However, I know more important than ending on a high note is that we keep fighting. That also means telling my story. If I can touch one life with my story, all of this was worth it.
This is the video on You Tube that taught me how to parallel park in minutes. It is good for anyone who has trouble parking or is about to obtain their license.
It took many weeks and even months to go through, understand, and appeal the Explanation of Benefits to the person that was helping me. It took even longer for them to be reprocessed and to receive a check that I could put towards the medical bills that were piling up.
Between the bills, needing to recheck each and every one of them to make sure I owed that amount, I was starting to feel exhausted and stressed out. To help Amanda I was also handling all of the finances, bills and investments. Anything at home that didn’t require an exorbitant amount of movement became my responsibility. Some chores had already been my responsibility but now became physically draining.
The pain kept increasing, and my pain manager increased mydoses of narcotics. They certainly helped, but they made me more dizzy and drowsy giving me less and less time to handle anything at home. This put more pressure on Amanda to get things done, and to continue working to support both of us.
During the coherent times, when the bills were taken care of and my home duties were done, boredom was setting in. Our house is not the biggest, I spent most of the time in a chair in the living room which is small. As each day passed the wall my chair was against seem to lean forward over me and the wall on the other side with a small aquarium on top of it seemed to move closer and closer. My living room was starting to feel like the size of a Cracker Jack box. Before things got worse I knew I had to have some type of change, but I was not quite sure what it was going to be, until Amanda found the answer, that I already knew but had forgotten from a suggestion Brad gave me many years ago.
Amanda was browsing medical articles on the internet and found an article on hand controls for your car. She looked at me and said, “You need these, so you can get out of the house when you’re not feeling drugged or tired.” It took a minute to process, the aspect of regaining my freedom would be incredible. I spent most of the past years having to rely on her, parents, or friends to get me out of the house. It sounded all too grand. I looked at the article and I told her I would start doing research right away.
The next day, as luck had it, I found a mobility store only two miles away. I wanted to gather information on hand controls and the cost of the items. After fifteen minutes of waiting for the salesperson to get done, he came over and ask if we needed help. I explained to him my situation and he walked over to a stand and offered me a flyer. He then asked what car I drove. I told him a compact car, he looked at me and the car outside and stated I would have to buy a new car. He then excused himself and went to the back, but before he did he told me I would have to pass registration for Penn Dot to use the equipment and stated there was a place in Hershey. He gave me no name and he did not have information on how much it would cost to install at his own location. The balloon of freedom almost popped.
Once we got out to the car Amanda and I agreed we were not going to deal with a person that treated us so dismissively. According to him I needed a new car, I knew he was wrong because I already researched that information. He then only gave me a flyer about the product, and he had no information about training for registration. However, I had enough material to research from the flyer and ask about hand control training, so our effort was not all wasted. All I knew, is I was not going back to them. For a salesperson who works in a facility that sells equipment to disabled people, he did not show any empathy. It was as if he were questioning the genuineness of my disability, considering how he was treating the customers that were 70 or older. It left a bad feeling in my stomach.
I shook the feeling by the time we were home, and took the information that I was able to obtain to start my research. The first thing I needed to know was if insurance would cover any of the costs. The second was to find a school to learn how to use hand controls and learn how much that was going to cost. The third was to find a facility to install controls and show me which ones I needed. Once again, I found myself a purpose. To get back some freedom I lost. It was the only thing on my mind: freedom, and get out of these four walls when I can.
I started my search of hand controls on the internet and found the facility in Hershey they were talking about. I quickly picked up my cell phone and called with paper and pen in hand to take notes. It rang four or five times until someone picked up. The young lady said she did not know much about the scheduling because the person who was supposed to be there was not, but she could tell me the cost was $150 an hour with about an 8 hour course and an assessment of my capabilities of $800. My heart dropped. That was $2000 just to learn how to use the controls! And then the knife went in. She perkily stated, “Insurance usually does not cover this.”
When I hung up the phone, I struggled to breathe. Another $2,000 on top of the $20,000 I paid for out of pocket expenses, deductibles, out of pocket maximums and physical therapy over the last eight years for six surgeries that did not work. I could have cried then and there, but I sucked it up and made my next phone call.
The facility I called was $120 an hour with an $800 mandatory assessment. I felt a little better: at least it was less. Than I called the last facility on my list. Genesis Rehab Services. A wonderful-sounding lady picked up and stated she would love to help me learn controls. She also stated at no cost they would come to my house to pick me up. I thought that was a great advantage. I then asked her for the cost of her services. She revealed it would be $100 an hour with a 4 to 8 hours of total sessions divided into 1-hour daily sessions so the person does not get tired, and there would be a one time fee of $800 for the assessment performed by her. She added she would help with everything I needed and stay by my side until the controls were installed in my car. She then said to get started she would need a doctor’s note and we could schedule the appointment. I told her that sounded great compared to the other ones I heard. I just had to talk it over with my wife and call the doctor to get the note. We both said our goodbyes and with this knowledge hope entered me once again.
Making the phone calls was like a roller coaster, my stomach kept going up and down learning about the costs, but knowing that this company could pick me up, an offer the others ones did not mention, was the biggest plus. I then called my doctor and with no arguments a script was faxed over. For a second I wondered why they had not suggested I get hand controls to help regain my freedom, since they were so willing to write the script, but I got rid of any negative thought and went back to researching companies that could install the parts in my car.
The first company I went to would not do, so I called the second one I found on the list and learned it was also right down the road. When Amanda woke up and went over everything I learned, she agreed it would be quite the expense, but worth it for me and to relieve some stress from her running all the errands. We went to the company that was much different from the previous one. We entered Total Mobility Services and were greeted by a pleasant woman in a wheel chair named Ann. She went over everything: How the installment was done, my options, and even took me out to her car to show me the hand controls in her car. With pamphlets in hand, and a lot more knowledge, she handed me a quote of $1,635.00, which was also not covered by insurance. She agreed with my frustration over why the insurance company would not cover devices to help people regain their freedom, but they did not. I thanked her for all her time and told her when I pass my tests, I will be back.
The research was over, and with a quick phone call to the insurance company, I did learn what I already knew and that was, I was going to have fork over all of the money myself. The government did have a plan to help with the $800 assessment fee only, but Amanda earned too much to qualify for it, but none of the other costs would have been covered anyway.
Ann confirmed that I was lied to when told I needed to replace my car because the other company only sells one type of control and if it did not fit your car they told their customers they needed a new one. She also knew of three people that fell for that pitch. She stated that here at Total Mobility Services they sell all types to fit any car. My heart went up and down as I learned of the costs, and I found myself at a crossroads, do I spend $3,000 or more? I always thought I was going to get better over the last six years. I never did, and after $20,000 what is another $3,000?
With my decision confirmed, I called Susan back at Genesis Rehab and scheduled my appointment…
This was truly the first time I was doing something to regain my freedom that I knew would work, if I tried hard enough. The surgeries were not in my hands, they were in the doctors, but this, this was under my control, and I was going to pass.