I am sitting on my chair staring at an almost blank screen, watching the words form from my mind to the screen in front of me – trying to relive the last month and a half since my previous entry. To me it is like a medical television show that spans a few episodes out of the season with me as the patient and star whose case doctors are trying to solve. However, this is my life. There are no do-overs and by the end of the episode, there are real life consequences that have to be dealt with.
On February 6, 2018, Amanda and I had our appointment at a satellite office of the Penn State Medical Center. We were there to discuss the dorsal implant that we had seen on ABC 27 news. It was a new implant procedure and from what we knew it might help people control their chronic pain more than the old implant allowed. I was cautiously excited to discuss what I learned from the program. I remember feeling a bit uneasy that I needed to explain my 10-year medical history with a new doctor, and wondering if he would believe me or not. I came prepared with my medical summary folder I created in case there were any questions. All that was left to reveal the mystery of this new procedure was for the doctor to walk in.
After a brief explanation of my issue to a nurse practitioner and letting her know my current implant was inadequate, I felt pretty good that she was going to summarize everything for the doctor before he got in and was going to spare me having to repeat myself. That was a load off already. Most places I went to I always had to explain myself twice, and when you are trying to cover that much history it can become exhausting fast.
It was less than ten minutes before the doctor entered the room. When he sat down in the little round black leather rolling chair, he looked up at me sitting on the table and stated he saw my chart and understood I went through a lot. Relief immediately ran down my body and most of the tension gripping my insides released its hold on me. The first few minutes of the conversation he was having with Amanda and me, my mind was dominated by the idea that he understood without my needing to explain. Refocusing on the conversation at hand was like getting punched in the stomach and having all of the wind knocked out of me. I went from relief to dread in as little as a half a second.
What was I hearing? The dorsal implant wouldn’t do what? Did he just say that the dorsal implant may help my legs, but it would not do much of anything to help all of the back pain I had? I looked from Amanda to him as if they were in a middle of a conversation and I walked into the worst possible part of the story. This was the new procedure on TV, it had to help me, I can’t go back to lying on the floor in pain most of the day. This was the superior procedure, this was the miracle I needed, just hold on… wait.
“STOP!” I think I shouted, or was it under my breath? I don’t know. I was in desperation mode, the implant I had was not working correctly or not working nearly as expected. “Look. I need help. I spend all day on the floor. I cannot even make eggs on the stove anymore without an extreme amount of pain. This thing…” as I threw my stimulator remote up into the air and back down onto the table, “This thing doesn’t do anything for me. I either have it off or I have it all the way up to the point of electrocution before it blocks any pain. I do not think it is working correctly.” I stiffened up ready to take a defensive stance on the medical device I knew I wanted or needed.
However, I did not have too. The doctor said, “I believe you”. He then stated that the device I have is an older model and that a newer model that had just been approved by the FDA earlier that month is a new stimulator that does the job of two stimulators and that the hospital still needs to approve it. He stated he thinks that will help me more than what I have now and then ended with his opinion that if we can get the back pain under control, he could still do a dorsal implant if my legs were still very bad.
“Oh! Well I do need something different. Something that works. I like the idea I will be one of the first non-test subjects that would get the stimulator implanted. Sign me up!” I exclaimed, a little disappointed that the dorsal implant was not the cure I was looking for, but satisfied that something even newer was going to be given to me. After the mandatory: This surgery will not help you 100%, signing of a few consent papers, and a review of other risks for surgery, I put my coat on and was out the door.
I was pleased overall. I needed help. Lying on the floor in pain with a malfunctioning stimulator was not ideal and he understood that immediately. It was not the surgery to solve everything that I was hoping for, but it was another option and hey, a few weeks before I thought I was out of options. It only took a few days to receive a phone call to let us know that surgery, number 9 if you are counting, was scheduled for 3/12/18. The only thing else that needed done was to wait until then.
March 12 came quickly. It was only a few weeks away and I was more than prepared. To say that I was not nervous was an understatement. The nurse who took my vital signs made the comment that I had the lowest blood pressure of the day, which reinforced the fact of not being nervous, since I have high blood pressure. As I lay in the bed with Amanda beside me waiting for surgery, the rest of the conversations took place between the hospital staff and me. These conversations were almost exactly like the previous ones I had before my other surgeries that had written about. The only difference was the last conversation I had with the head anesthesiologist. I was so used to going through the motions of signing-off on the paperwork, that I was not prepared for the question he asked. He looked between me and my chart on the computer beside him and asked what type of anesthesia I wanted. I looked at him with a blank stare and then looked at Amanda with a blank expression. “What type of what?” I asked. He then further explained that with my surgery he could give me anesthesia in two different ways. The first way was the normal way. Knock me out, spend hours in the recovery room, and when I am ready I can go home. The second way, the option I was never given before, was to only have local anesthesia. He explained with local anesthesia I would not have the grogginess that I hated, which was marked on my chart. I would not feel pain, but I would be aware of all of my surroundings. The advantage of doing it like this is quicker recovery time, fewer complications, and less side effects from the anesthesia. For the first time in 5 to 6 surgeries I was caught off guard. I had no idea what I wanted. Seeing my struggle with the option, he stated he would be back in ten minutes to give me time to think about it. It took the full ten minutes before I made the decision. Amanda stated she would go with the local surgery because I would not need to be in recovery as long and the side effects would be less. Half of me felt she was saying that because she did not want to spend the extra amount of time in the hospital that I would need if I chose general anesthesia. I know now that was not the case, but I had a minute left to make a decision, and I was conflicted. I was never given an option before and I had never been awake during surgery.
The anesthesiologist came back and asked me for my decision. I told him, “Well, I do hate feeling groggy and I was never awake for surgery before, so we might as well make this interesting. I am getting a device that was just approved the month prior and now I get to be awake during surgery.” The mundane nature of having surgery (from my perspective) was taking a turn toward actually becoming interesting.
They literally must have waited for me to make that decision, because once I made it, I was wheeled down the hallway to the operating room. For the first time in a long time, I was feeling a bit nervous and curious how this was going to go. I was more excited to be experiencing it firsthand instead of being asleep. I had all the confidence in the world the anesthesiologist was going to have me fully awake with no feeling of pain. As they wheeled me beside the operating table, I was given further instruction. I was told to flip over to my stomach on the operating table. Next I had monitors attached to me and a blood pressure cuff put on my right arm. I was normally asleep by this time, so it was interesting to be awake during surgery preparation.
With preparations concluding, I was asked if I was comfortable. I told them my skin, due to my condition, is very sensitive to temperature. I asked if they could please put more blankets over my legs and back before we got started. One staff member said they certainly can do that and within a minute a blanket that felt like it just came out of an oven was placed on my legs and another on my back. It felt wonderful against my skin that had been beginning feel like tiny daggers were pricking my skin to the point it almost becomes unbearable. But the warmth from the blankets calmed down my nervous system. The last of the preparation was then put in place – a big blue tent-like contraption surrounding my upper body and head.
Once the tent was in place I was told we were ready to begin. I felt two pin pricks into my back as the local anesthesia was injected. I also felt warmth enter me as medicine filled the IV connected to my hand. As the surgery continued I could not feel anything at all. My legs were strapped down or so I was told, I would not have noticed. I was awake and responsive. I remembered answering questions that I was asked. I also remember not being able to speak loudly. I felt that every word out of my mouth was mumbled. I was also not aware of how much time was passing by. The only minor complication that I personally had was when the surgery was midway, I was beginning to boil. I knew I was mumbling because I told the person who was communicating with me that I was burning. I needed to repeat three times that I was hot and boiling. I couldn’t get out it was because of the heated blankets that were on top of me. I went from being cold, to feeling like a boiling lobster. I was a little panicked that I was going to have to be boiling until the surgery was over. Luckily, I recall someone saying that they thought I meant the blanket. As soon as the heated blanket was removed, I thanked God, as the coolness of the room swept over my upper body, and my panic ceased almost immediately.
The next thing I could remember was being told it was over. Then, like a program coming back from a commercial break, I found myself in the recovery room with my wits about me and no grogginess just like I wanted. I did not feel too much pain. I was given medicine for home, but the medicine they gave me and the anesthesia would keep me pain-free until I was ready for bed. I thanked everyone for helping in the recovery room and all that was left was to meet the representative from Boston Scientific to adjust my device for initial use and schedule a two-week follow-up for further adjustments. She introduced herself and went over the benefits of the device. The tutorial did not take long since I was already used to having a similar one implanted in me. She was swift in making the initial adjustments and was very kind in answering my questions and making tiny tweaks to the setup she gave me to try out.
I was pleased with everything. I had a new device that was just approved implanted into me. Dr. S. was fantastic, the anesthesia team was phenomenal, the representative from Boston Scientific was kind, courteous, and knowledgeable, and the rest of the staff at Penn State treated me wonderfully. However, if you have not been following along on my journey to think this was going to end without an issue would be very naïve.
The first omen happened immediately. After testing my new remote control for my stimulator, we told the nurse we were ready to go. We were given discharge instructions and were told that they would call for a wheel chair for me. Before the nurse made it to her desk, she circled back to my recovery area. She stated that we could not leave until the doctor signed the discharge form. Everything was done, but the form had to be signed. To keep this entry shorter, the doctor’s assistant had to be paged three times and we had to wait until the surgery they were in was over. It took an extra hour and a half before the assistant came back and signed the form.
The second omen happened right after the form was signed. A page was made for the wheel chair. After 15 to 20 minutes they paged for a wheel chair again. My patience was coming to an end, but everyone was so nice it was easier than normal to keep my temper under control. After the 20 minutes expired we were assured the wheel chair was on its way up. I sent Amanda down to get the car from the garage and not more than 5 minutes afterwards, the wheel chair and transporter were there to take me down. I got up and plopped myself into the chair, looked at the transporter and asked him to please get me out of here, so I can go home and rest. Agreeing, he double-checked my wrist band and told me to wait one more minute. Behind me at the desk I heard him talking with the nurse, stating that I was not the one he was supposed to pick up, it was another person who was not ready to go. I screamed, “This is my chair. I waited an hour and a half for a signature, a half hour for a chair, I am not getting up.” During the next ten minutes they figured out that the chair mix-up was caused by a computer error.
Finally, after everything was signed and computer departures were fixed, I was wheeled to the car. After explaining what happened when Amanda asked what took so long, I buckled up and after a long day, we were finally on our way home.
Now you might think that those two incidents, delayed signing of the form and the wheel chair error, were not a big deal – and overall they were not. However, having lived the life Amanda and I have shared, what happened next should have been foreseen. . . .
As we approached home, I got the remote control out to turn on my stimulator. I pressed the button and nothing happened. I figured maybe since my back was against the seat the signal could not get to it correctly. It had to be, right? As we pulled into the driveway, I leaned forward and hit the button again, and again nothing. Dread, known as the Donnagelo Curse, fell over me. I knew something had to go wrong. I entered the house, got the instruction book out, and tried again pointing the remote at my stimulator, and again nothing.
“Amanda!” I screamed, in almost desperation mixed with an uprooting growl of someone who was about to put his fist through a wall.
“What?” she asked.
“It does not work!”
“What do you mean?”
“I mean it fn doesn’t work! I am going to call her (the rep from Boston Scientific).”
I dialed her phone number and she picked up immediately.
“Hey…ummm….my device doesn’t work.”
“What?” she asked, sounding confused.
“It doesn’t work. It worked at the hospital, but it does not work now.”
“Okay, let’s test something”, she suggested.
She had me examine the connections to the device using the remote I had. Green check marks meant that the connection is good. Any other symbol meant it was bad.
As you probably guessed, and to my horror, every single box had a red “X” through it. After a few more tests, she stated, “We’ve never seen this before, even during all the trials. I tell you what. I will meet you tomorrow morning at your home, and have a look at it, and I will start making some phone calls.”
I agreed, mortified something nonfunctional was inside of me.
I told Amanda we will meet her in the morning, but added, “I know fixing this will require another surgery. And now I do not have a working stimulator implanted to help me with the pain!”
I tried a dozen more times that night, each time failing, each time believing and not believing that this is my luck. . . .
What I omitted is I also had the first migraine of my life right before surgery. I spent two days with a towel around my head and I just sat in my chair and listened to TV. I was very nauseous and threw-up most of the day. In addition, I was diagnosed with shingles. My first case of it. The only saving grace is I already had and was on pain medicine to help me get through it. I was not cleared for surgery until the day before the operation when the shingles were under control with an antiviral. I was dealing with a lot more than just the surgery.
I also want to say before my next entry that what happened and what happens next is not Penn State or Boston Scientific’s fault. They honestly were fantastic, and I wrote a letter to both companies thanking them for their service. However, it does not mean what happened next wasn’t a tough situation to deal with.
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!
I wish to remind my readers that before I had the insurance I have, I never had to contact my health care company. As the years went by, it felt like I could
not get off the phone with them. If it was not bills, MRI for my brain, MRI for my spine, approvals for medication – it was approval for my procedures. The first few months I did not have a problem with them, but the following years felt like a battle of wills. Stupidity vs Perseverance. I had to defeat the stupidity of my insurance in order to obtain the medical procedures I needed. Up to this point, I won with no
issue, but what came next was that I lost my first battle … well, … well almost lost:
I now had an MRI proving that my back pain was not exaggerated, and there was clear-cut reasoning behind why I felt the pain that I did. To remind you, I had two spinal bones with severe arthritis and two bulging disks, with other anomalies, that we were not concerning ourselves with at this time. The disks were L4 and L5 with surrounding areas. The next day when I got home I called my PCP and left him a message begging for help to get an appointment to see a back specialist ASAP. I knew if he made the phone call for an appointment I may get in a lot faster than if I did.
My PCP did just that. He set up an appointment to meet a specialist in
a few weeks instead of a few months. The following weeks were almost
unbearable. The pain tearing down my back into my legs plus pain shooting upwards from both of my ankles, made for a hurricane of pain through my body. I lay on the floor all day and night. My pain manager prescribed more oxycodone, to help me get through the nights until my
appointment. I did not want to take more medicine, but I had no choice. Other options were illegal and could get me kicked out of the practice.
As the weeks went by the day finally came when my wife and I found ourselves in a new office, waiting for a new doctor, and explaining our whole situation to a new nurse before the doctor came in. Her only
words as she heard our disgust with a new problem and exhaustion of another doctor visit were that she was sorry, and she hoped they could do something for me to help relieve all the pain.
She left the room. Amanda and I did not talk at all. Amanda sat on the chair to my right slumped down into the seat with her phone, half paying attention to it. I sat on the table that at this point I figured only
one company made and sold to every doctor I had ever seen. As I waited I filled my time with kicking the step stool around, making more noise then I should, until Amanda stated to be quiet when she
heard voices outside of the door.
I flipped the stool right side up with my feet, disregarding the pain that was rolling up and down my body, as soon as the door handle was pushed open, and my new doctor entered the room. He introduced himself, read the computer screen the nurse was looking over and turned my way with a model of a spine in his hands. He first apologized for everything I had been through. His bedside manner was very professional, endearing, and comforting. Using the model, he explained what was wrong with my spine (which I described earlier in this blog entry). He also stated that the reason he believed I was having pain almost all over my body was because I had a disease called Complex Regional Pain Syndrome. A disease that usually starts in a thirty-year-old patient brought on by a trauma that never has healed. He stated that the fractures the surgeons had made in my ankle over the last eight and half years never healed correctly. He knew year after year I was being fractured again for another surgery. He stated with this and the pain in my spine my brain had gotten so used to pain that
any type of sensation was being interpreted as pain. I then immediately asked him if this was the reason that wind on a spring day or a fan on low blowing across my legs caused so much pain I had to cover them with a blanket.
He paused and looked at me and stated that was one of the key symptoms of this disease. Amanda and I sat there stunned for what seemed to be ten minutes as he typed in his computer. The next words out of my mouth were, “Thank you! I have been dealing with this for years and no one had given me a diagnosis”. My pain manager and Dr. Treaster stated I might have it, but they were not experts in it. He was. I could not believe it. I had a diagnosis. I made him write it down on a pad and I laminated it when I got home. It is displayed on the fridge to this day.
However, before I had the satisfaction of putting up a diagnosis of my pain on the refrigerator like a child bringing home a good test grade from school, I had to cope with his informing me that I was going
to need shots in my back. The shots would be administered at an outpatient facility close to my house and they would make the appointment very soon for me. He stated that the shots should help my
legs and back as they numb the area and help the inflammation between
For the first time in long time, I was hopeful. I thanked him profusely and apologized to the nurse for my unenthusiastic attitude before the doctor came in. Amanda and I were thrilled. I was going to get shots, and they made the appointment two weeks on a Wednesday from now.
Can you imagine how happy I was? There I was lying on the floor in pain the next two weeks with a smile on my face. For the first time I had a diagnosis, and an appointment that was going to help not only my back, but my legs, leaving worry just about my ankles and the tumors in my head. I was delighted. I told everyone of my incurable-disease diagnosis, incurable yes, but treatable. I just couldn’t wait. It was like waiting for Christmas, almost better. Two quick shots and then the pain should subside.
I remained jubilant, I was happier than ever, until . . . I think you guessed it, in the mail so very unexpectedly, was a letter from my insurance stating that the procedure was not medically necessary. A procedure that had been recommended by the hospital they own, a procedure that was recommended by a specialist who only deals with spines. Two doctors had stated that I NEED these shots to help me. However, the Wizard behind the curtain, called the medical managers, said I
Now I knew for a fact from the last time, that they did not look at the paperwork, so once again a phone call was placed to my appeals coordinator . When she picked up the phone, I think I heard her sigh. She heard, “This is Doug Donnangelo again, and I swear you guys do not know your ass from your elbow.”
What’s going on?”, she asked.
I told her about what happened and that treatment that I needed that was covered under my insurance had once again been denied by a medical manager who had never seen me; treatment that had been recommended by two of their own doctors who had examined me, knew what was wrong with me and knew the treatment I required.
She quickly began typing. As she typed, my jubilation ended and all I saw was red and I let loose, “How the hell can you guys say something is not medically necessary when your own doctors said it is? We know from our last conversation they did not look at my chart, we know they denied it hoping that they would not have to pay for it. We also know, I am going to win this, no matter what it takes, a lawyer or me rolling over their stupid asses, one way or the other.”
Once again she took the comments in stride. She must have a technique to block out this type of aggravation over the phone or she heard it so much she got used to it. All I knew was that working for a company that declined coverage for the legitimate medical needs of their customers, and taking calls from them while they dumped their anger on me did not seem like the kind of job I wanted.
She placed me on hold for what seemed like an hour, as my blood pressure skyrocketed and I experienced an adrenaline rush triggered by my anger that would have enabled me to split a car in half with my bare hands. She got back on the phone and by her tone, it seemed to her she had an answer that would satisfy me.
“Mr. Donnangelo I know you are upset, but we want the best medical solution for you, our medical manager believes that you need to try physical therapy first.” She waited with baited breath for my answer.
After a minute of unsuccessfully trying to calm down, I replied, “Are you guys assholes? Are you hoping senior citizens just accept your answer so your company saves money? How can he suggest that? How does he know more than my doctors? Does he know I have been lying on the floor in pain for weeks and I finally have a diagnosis and he thinks physical therapy will help me!!!!.”
“Yes, understand, we reviewed your file. . . . ”
Before she could finish, I continued my tirade, “Does your doctor know I already have had 8 years of physical therapy on my body? Oh wait he doesn’t because he didn’t do his due diligence!!!! Get my shots approved now!”
“You had physical therapy? Let me see…oh yes here it is…yes it shows you had a lot of physical therapy, I will get your records and present them to him.”
“You have to be kidding me! Okay… Okay…. Look my appointment is Wednesday next week. Today is Thursday. Get it done before my appointment, because if I have to delay, I will be lying on my back once again, for weeks, until they can fit me in. Tell that asshole he better approve it, before I have a lawyer and myself run over his ass so fast, he will not know what hit him.”
I found myself once again, wanting a phone I could bang down, wanting to make a loud noise, but instead it was a press of a disconnect button. I was out on my deck fuming. Amanda could see I was about to flip over a table or burn a shed down. Before I could contemplate how to release my anger, my phone rang. It was my spine doctor.
“Hi Mr. Donnangelo. I am sorry to say your shots were denied, and the doctor, who usually never makes phone calls, called the medical manager to let them know you need those shots, but it did no good. They upheld the denial.”
I told her, “Don’t worry I just got off the phone with them. Tell the doctor I am truly appreciative of his making the phone call, but you leave those fucking assholes to me. Once I run their asses over the phone it will be approved, trust me.”
“Oh! You already know. I am so sorry, Insurances can be so difficult sometimes. I truly am sorry, but the doctor really did try”, she replied.
I commented back “Don’t worry about it, let me handle it, just let him know once again I appreciated it. I will have it approved or they will regret it.”
“Okay, just keep us posted and good luck. We were shocked too when it was denied, you really need these shots.” I thanked her and told her once again, not to worry about it.
A few days passed and it was Monday, two days before the appointment. I called the appeals coordinator and left a message. I tried two more times that day and could not get through. How I stopped myself from punching a hole through the wall is beyond me. I was able to control my frustration with pure will power.
Tuesday morning came. The phone rang around 9 a.m. and on the other end was the appeals coordinator. “I have good news Mr. Donnangelo. I received your physical therapy notes and I know there is enough here for you to win your appeal to get your shots.”
“Great….. My appointment is tomorrow. Get it done immediately, please.”
“That is the problem, the only medical manager here is the one who denied it. It is hospital policy that the medical manager who denied it cannot see the appeal to overturn it so it won’t be until Thursday.”
“Are you telling me right now, I am going to have to lie down on the floor another two weeks until the doctors can fit me in, because the jack ass who did not spend three minutes looking up my record and denied my shots was proven wrong? Proven wrong by my medical records. But it is your company policy that when medical managers make a decision that is overturned they can’t change it themselves! You cannot possibly be telling me this. I was a manager for a bank. If I made an error my company let me be a big boy and fix the error or override it.”
“I know Mr. Donnangelo and I am truly sorry but your shots will be approved, just not until a few days.”
“Oh my god, do you know that your company is the dumbest company I have ever worked with? I truly appreciate your help getting this approved, but how do you work with such incompetence? I mean from claims, to approvals, and to appeals. I have nothing but issues. I did not have to contact Highmark one time. What the hell is wrong with you guys? Look, it is time for me to have a sit down with your CEO. Thank you, but I have to go.”
I hung up right away, rescheduled my shots for two weeks later. I spent the time during those two weeks, refining my letter to the CEO, and to my surprise within a day I had a meeting set to meet the vice president. My dad and I could not wait….
This is a little more condensed than what I went through. It took longer and it was a little worse, but everything written is true. I could not believe Mr. Medical Manager, who knew what was best for me and felt a denial was best, could not overturn his decision once proven documentation was handed in. If you have not read all of my entries, you will want to read the next one.
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.
Before I get started, as I stated in the prologue, the first 6 years were easy to write about. I have medical records to help me with chronological order, and it was very easy to remember surgeries and how I felt, and the impact on my life and family. However, after the six surgeries and the remaining two and a half years until the present that followed, things became a little jumbled in my mind. I wrote a list of things that have happened and put them in order the best I could. If I repeat myself I apologize. As stated, I am having trouble getting started with this second part. So, I have decided to take my dad’s advice: “If you do not start you will never finish.” Using that advice, here we go:
This is going to be me , I know it is, This is my new existence, I am going to be like that, I thought as I watched the television. “What if I can’t get up and walk or exercise, I need to at least do floor exercise, I have no choice.” . My pain pills make me tired and dizzy, I only have an hour or so of time before my next pill where I feel a little coherent, but the pain also uses this time to resurface. I cannot exercise like I used too. I am stuck, the thought echoed through my mind. Horror clenched every thought.
As these thoughts were flowing through my head, Amanda was sitting beside me playing her game. I could tell by the way she would peer over at me that she knew bad thoughts were going through my head. My attention was towards the TV in front of me. On the screen was a person who was depressed and couldn’t get out of bed. Every year he grew bigger and bigger, until he reached 645 pounds. I don’t know why I was so captivated by the show, but I watched it all the time. My 600-lb Life was supposed to be a motivational reality show, showing people who were heavy and did everything they could to lose weight, including surgery by a doctor in Texas. However, to me it was a horror show. As the people on the screen were turning things around, I was going in the opposite direction, I was going in the direction that confined them to their beds.
Amanda saw the dread on my face. I saw her pause her game, turn and yell, “That is not going to happen to you, you do not eat that much! You need to watch something else. I would not let you get that big. You may gain a little weight, but you’re not going to gain 400 pounds!” After her rant, she turned back to her game in a huff. I turned my head back to the TV and finished watching the show.
It was that show that put me on the ground. I started doing the exercises on the ground until the pain overwhelmed me. I usually performed the exercises that I learned from physical therapy. At least it was something, and after a few weeks, I felt my mood lighten up and was less depressed, as I was no longer being held captive in my chair.
My enlightened mood had me looking for other things to do. Things that would give me the feeling of accomplishment. People suggested that I should work from home, however I was so dizzy and tired most of the day, that I would not be dependable to the employer, so I knew that road was not open to me. If I couldn’t give my 100%, I did not want to do it. As a few days went by, I started getting Explanation of Benefits documents in the mail and bills from the last surgery. Explanation of Benefits (EOB) are the forms that show the procedure that was done and how much the insurance covered (I plan on doing a whole explanation on howto read them once I am caught up with the story) and how much the patient would have to pay. It also states in big bold letters: THIS IS NOT A BILL.
Over the last six to seven years we spent over $20,000 in deductibles and out of pocket maximums. I never gave a second thought to those EOBs that came in the mail, I just paid the bills as they came. One day, I remember Amanda bringing in the mail and laying the envelope from the insurance company on my lap. As normal I opened, and quickly glanced at it. However, this time it said: “Denial of coverage”. It was for my surgery! I called the insurance customer service center and an employee on the phone told me Johns Hopkins processed it incorrectly and that is why it was denied. I then called Hopkins, they told me over the phone that they did process it correctly. I found myself between a rock and wall. Hopkins told me this after I called my doctor to let him know that my insurance company told me that his billing department is charging an outpatient procedure as an inpatient, and I was calling him to make sure he gets paid. I called my insurance company again and asked them to look at the procedure and processing from the EOB again. After being put on hold they gave me the same answer, they stated that the charge code that Hopkins was billing was incorrect. By then, what seem like hours on the phone, I was tired. I decided to let it go for a few days in hopes it magically fixes itself.
I called the billing manager at Johns Hopkins, and she stated that they are not processing the claim as inpatient surgery. She asked me to hold while she contacted a billing manager at my insurance company. After ten to twenty minutes on hold, my Hopkins contact said the claim will be taken care of, and that she had no idea why I was told Hopkins had filed improperly. She even stated that the insurance company contact stated the same thing. I thanked her for her time, and handling the issue that could have cost thousands of dollars if it was not fixed.
I had the time and needed the distraction, so I decided to look through all of my claims online for the past year. I noticed that there were over 7 processing errors. I immediately called the insurance company’s customer service line. The woman on the phone stated that the billing department will be notified, and apologized. I told her that I am on drugs for my pain and I am figuring out these mistakes versus people who are getting paidto do the paperwork. If phones could still be slammed down, I would have done it after the conversation
After another week went by and nothing was reprocessed as promised. I sent an email asking for the CEO. I did this because talking to the company representatives was not getting me anywhere. I was tired, dizzy, in pain, and I was at the end of my rope. Not only was I thinking about the money I overpaid due to processing errors, I was frustrated and concerned about how many senior citizens were facing the same thing.
Within the hour, I received an email stating that they do not give out information on the CEO. I was livid. What kind of nonsense was this single-line answer? I sent an email back stating that my the CEO of my old company, had an open door policy.
I struck back another email stating that I will find it on my own. It only took twenty minutes to receive an email providing a phone number for a person with a vice president title I could talk to.
I called and spoke with her. After weeks of going back and forth with the insurance company, I finally found someone that would help me. She promised she will would get to the bottom of it and she will would have a senior processor look into it.
A few weeks later I started to see things being reprocessed at a Tier 1 level instead of a Tier 2 or denial. The lower the tier of a procedure, the greater the insurance payments were and less patient responsibilities. At one point in time before I spoke with the vice president, I had an employee agree that it can be confusing. I again expressed my concerns about the ability of senior citizens to review these documents; and shared my lack of understanding how mistakes were being made by insurance employees that I could detect – while less lucid on pain meds. I literally learned codes and how to process items throughout the weeks.
After everything was reprocessed, one had to be reprocessed three times, because I kept noticing it being processed wrong, there were 12 claims that had to be corrected. Over $700 was owed to me. It only took a few weeks to receive my check from the facility that was overpaid.
I thanked the vice president for all of her efforts and stated I wish it did not have to go as far as it did, but I was on a strict budget and need every penny I can get. She apologized and told me to contact her anytime.
It really wore me out making all of those phone calls, but I fought it. It gave me something to focus on at the time. It literally took me out of the black hole and gave me a purpose again. Now that it was over after a few months I needed something else, but that would have to wait.
During the reprocessing, emails, and all of the phone calls,I noticed something that was unexpected. I started getting pings of pain up and down my right and left leg at the same exact time. I told Amanda it must be the deterioration of the left ankle Dr. Treaster told me about, and my battered right ankle. It was just odd that the pings of pain were in both legs at the same time, never just one leg at any time. Maybe I did too much that day or maybe it was from stress, but for now I was happy with the outcome of the insurance battle and I was tired of doctors offices. I left it go and turned my attention to something I had put off for a long time since I had assumed I would be getting better – hand controls for my car. It was time to get some freedom back…
I sent a lot of emails to both facilities and made a lot of phone calls throughout the two months. It really wore me out. I only had a few hours out of the day I was coherent enough to get this stuff done. I did not want to bother Amanda with it. She was doing too much already taking care of me and working. But it woke me up and got me out of the dark, that I am thankful for. I am now on the second part of my journey; I can’t wait to tell you what is happening now we are almost there…
This was a very difficult entry to type. I will tell you the reasons in another blog entry. Please forgive any typos or grammatical errors. At this time, it is very hard to type, and I am doing my best to continue the story and Ms. S is doing her best to understand my ramblings as I am under the influence of heavy medication as I type.
Thank you again for your following my blog and joining me on my journey. If I believed this journey did not have a happy ending I would not be typing it, but soon you will be joining me on my journey as it actually happens in real time. I know we can get through this. I take this thought and keep positive. For now, please forgive any errors.
Thank you again.
I am honestly beginning this too early, but I want to start writing it. I finally finished writing about the first 6 surgeries. I lived with those surgeries and the experiences in my head for a very long time. To get them out for others to read and for me to share feels like a weight lifted off my shoulders.
After the sixth surgery and the final appointment with Dr. Ficke it took a long time to bounce back. I sat in my chair for months in pain. I went to the pain manager and got pills to help me cope with it, along with a tens unit. I adjusted my life little by little as things felt worse. Each month it felt like I had to give up an activity I enjoyed. I was in a really dark place. If it were not for my family and the friends I had left, I could have fallen into a dark pit and might not have gotten out. My determination to find a solution for the deterioration for my ankle and pain was gone. Though I still remained strong physically, I felt like a piece of blubber on my chair. My worst fear went from being in pain the rest of my life, to becoming 600 pounds, thanks to the TV show My 600-lb Life. I truly now had three worries: my food intake, my pain, and my loss of activities.
Things were looking grim, but if it had ended then and there, I wouldn’t have to continue writing. What happened from surgery 6 till now, a total of two years, was more challenging than the last 8 years combined, that was discussed in the first volume of my blog.
During the last 8 years I was a follower. I did what the doctors told me to do. I did everything they thought would help me, but nothing worked. After going through that dark time that lasted a few months I came out of it stronger. These next two years I became the leader of my health. I was no longer the follower. I was transformed.
In the next few entries I will tell you the story of how that came to be. Unlike for the first six surgeries, it is very hard for me to put things in chronological order, because everything feels like a whirlwind. I promise the entries will be true and accurate, but it may take a week or so to organize my thoughts.
Please wait, it will be worth it.
The journey is not over, not even today.