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09.27.17 – The Fight For The Future – The Story Volume 2 – Part 10

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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.

“Call Dad.”

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   

Afterword

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!

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Thank you for joining me on my journey this far.  There will be a lot more content and stories to come.  Please share my blog if you can.  I just want to pay it forward to anyone that might benefit from my story.  Thank you again!

 

Surgery 7 Spinal Trial Simulator – The Story Volume 2 – Part 9

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If the odds on surgeries were the same as in roulette, I was laying all of my hopes and prayers on a single number on the wheel. Betting on a single number to win was the worst odds, but if the outcome came in my favor I would strike it rich.  Rich not in a monetary value, but rich in regaining my freedom and releasing me from pain that spreads throughout my lower body from waist down to my toes.

The greatest expectation I was told by the spine pain specialist was an improvement between 40 to 60%.  I was thrilled.  When you’re desperate, your thought process and expectations becomes cloudy.  I did not hear the 40% at the time.  All I thought about as I lay on the floor the night I was told the range was the 60% value not the 40%.  I told Amanda that I may be able to go back to at least a part-time job for a few hours or be able to work at home if my medicine dosage goes down – which my neurologist agreed was a reasonable expectation.  Amanda was quick to respond that I would still have pain, it may take a long time to feel better, and I still had ankle issues.  She was trying to lower my expectations to save me from disappointment, but that night I heard nothing.  I ignored everything she said, and stated, “Just think, I don’t have to put all of these tens pads over me anymore and carry this huge remote (that controls the intensity of the shocks sent to the pads).  I can’t wait!”

I am not sure what happened that night, but I had a bad nightmare that may have been from my nerves or stress or to quote Scrooge, “an undigested bit of beef, a blot of mustard, a crumb of cheese…” but the next day I was not feeling as happy as I had been  the night before.  I had six surgeries before, but they were all on the ankle.  “This was going to be on my spine!”, I thought.  If something went wrong with my ankle operations I risked losing a foot that has plagued me for over eight years, if something went wrong with this surgery, I could end up paralyzed.  They were going to be soldering a device on my spine connected to my nervous system.  It all sounded crazy.  I was up four hours before Amanda was, and during those four hours I was feeling too nervous to look on the internet for information.  I was always told by my doctors that the internet was the worst place to go seeking a diagnosis for an illness.  The internet  made it easy to make one think that their normal cold may become a deadly disease.  Misinterpreting information like this makes patients feel more stress and makes them more nervous As they wait for a real diagnosis. So, thinking of this advice I decided to stay off the internet.  I had learned there were more people on medical blogs complaining about undesirable outcomes, than successful ones.   By the time Amanda woke up, I was a nervous wreck thinking about the surgery.  A feeling I had not felt since my first or second surgery.

Having a wife who is a nurse is a blessing and a curse.  Amanda provided inside knowledge of the medical field, However, I felt she was more desensitized to my emotions that morning.  That’s a trait I feel is good for a nurse’s emotional stability when dealing with the medical issues of a multitude of patients.  Fortunately or unfortunately this lack of emotion is brought home as well and not left at the hospital.  Amanda walked down the hallway, rubbing her eyes as she was trying to wake up.  I turned around and looked at her and stated, “If they screw up, I could become paralyzed!” Now it may be because she was a nurse and desensitized like I stated above or perhaps she was tired, but she looked at me on the floor and retorted, “They put pacemakers in for people’s hearts all the time, I am sure they can handle a stimulator.  It is done all the time.”  She then turned into the kitchen for breakfast.  In her mind, she had allayed my four hours of worry, and reassured me with a few words.  The topic was closed. However, in my mind it would not be over until it was done, but instead of pushing the issue, I lay on the floor in silence and waited…

The day for the trial surgery came without much ado.  My nerves were calmer, it was either from medication or it felt like I was just jumping on the same horse I always ride.  When we arrived at the facility, I was pleased to see that the paperwork I had to fill out for the trial was only a few pages long.  I quickly initialed and signed the forms and waited with Amanda to be called back.

Only five minutes passed before the surgeon came out and told me they were ready to go. The room was only a few feet away, and since it was an outpatient procedure I was able to walk into the room, instead of being wheeled in on a gurney.  I was instructed to lie on my stomach and put my head in the hole of the pillow and my arms in the arm rest below.  It was the same position I assumed for receiving a shot for my back.

During the next few minutes the doctor instructed me on what was going to take place.  “Mr. Donnangelo you are here for a trial spine implant?” he asked while his voice recorder was on. “Yes.” I replied.  “What we are going to do is numb your back.  Once numb, we will place a lead onto a nerve ending in your spine that will be connected to wires that will come out into a box.  Once done, we will adjust your device using a  remote to your liking and then you will go back into the room for instruction on how to use your device.  Do you have any questions?” Lying on the table, I felt the cool disinfectant gel followed by the pinch of a needle going into my back releasing the numbing medication, “Ummm…..no.”  I stated, but that was a lie.  I was having wires sticking out of my back connected to my spine, what could go wrong, I thought.

I lay on the table for around forty-five minutes, listening to familiar noises such as the heart monitor beeping, instructions being given to the nurses, and the sound of pressure going in and out of a blood pressure monitor.  I only felt minor pressure on my back during the procedure.  After I was told the leads were placed, I felt only the slightest amount of pain from one of them.  They taped gauze pads to my back to cover the punctures that had been made, and applied extra tape to protect the device.

It was honestly painless; when it was over I moved my legs and was happy to realize Amanda was right.  It was no big deal, just like she said  After the tape was applied, a representative from the company stepped beside me and told me he was going to turn the device on low and I should let him know when I can feel it and he will adjust it accordingly.  I was anxious how it was going to feel.  I was not sure what to expect.  As I lifted my head the slightest amount, I saw he had a box in his hand with a dial or push button to raise the intensity.  As the first wave of “shocks” were felt, the sensation was very familiar.  It felt exactly like my tens unit.  This sensation was pleasing to me, but also worried me.  It was not a significant improvement over my tens unit, except it is without the pads.  If the tens unit didn’t help me a lot how would this?  I kept my worries to myself and answered the questions that were given to me.  Questions such as, where do you feel it, how much do you want it turned up, and how do you I want the sensation to feel.  It took only 15 minutes to program the device.  I could feel the “shocks” in my legs and lower back and a little in my stomach.  I knew the trial was only for four days and felt that it was good enough.  The representative was very pleased it did not take long.  After he disconnected his remote, the taping of of my back was finished and I was able to get up and walk to the room for instruction on how to use the device.

It was very simple to use.  It was actually simpler than my old tens unit. The remote was small and fit into the palm of my hand.  It had an on/off button, a plus and minus button to control intensity, and a sync  button.  It was very easy to understand.  After we were done, an appointment was made to take it out in four days. At that time I would report if I had decided to get a permanent implant or not.  It was the first time I had a trial surgery and was able to decide if I wanted the permanent installation. It was nice to have the option to either discontinue the trial without going to the next step or move forward with the permanent implant.

Amanda and I went home, and I told her over the next four days I did not want to do much.  I was afraid of getting a wire connected to my back stuck on something and having it pulled.  She understood and knew I needed to rest a few days.  The punctures that were created to put the leads in did not hurt too much after the  local anesthesia wore off.

I was pleased overall with how things went.  It was the first procedure I had ever had that did not end up with me in more pain then when I started. I spent the next four days adjusting the implant when I needed to.  I told Amanda that it felt just like my tens unit.  Meaning that it helps, but was not the miracle I was hoping for.  However, I also told her they stated that the permanent implant would work much better than the trial.  So, if I felt like a tens unit was on me blocking some of the pain, a permanent unit would block more.  It only took two days to know I wanted the permanent one.  I actually knew before I had the trial, I wanted it.  I needed anything new to help release me from this pain.

The four days passed, I sent an email to the insurance company warning them I better not have any issues with approval for the permanent implant. The email was sent to my appeals manager and the vice president I had the meeting with a month ago.  I had no doubts that the approval was made before my first phone call to check the status of my approval, and to no surprise it was approved.  With approval in place, Amanda and I went back into the office to have the device removed.  I told the doctor it helped some and was once again told the permanent implant would work better since that device would be soldered onto my nerve endings.  The removal only took a half hour as they checked to make sure the wound was healed and all of the tape was removed from my back with and place band aids over my punctures.

I was looking forward to the permanent implant which was scheduled a month out. All of my nervousness was gone and I was more than prepared for the upcoming surgery.  Until then, I had to wait once again on the floor connected to pads with wires connected to my tens unit to help with the pain…

Afterword

The tens unit was okay and it did provide almost the same relief the temporary implant did.  There were two things I liked the most about the implant. There were no wires outside of my body like the 8 used to operate my tens unit, and  that I was told the permanent device would be much stronger and better than the temporary.  There was a chance I would be 60% better which would lead to a decrease in pills.  To me it was a no brainer.  The trial  stimulator was just another step I had to get through to get the treatment I really wanted. 

As I left the office another patient was waiting.  It was an older lady who was just as nervous as I had been.  I quickly told her what I went through and told her that she did not have to worry and that they would take good care of her.  She smiled and thanked me on the way out.  I hope she is doing well . . .   

 

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The trial implant right before it’s removal.  I still shudder when I think of a wire that is inside my body was also outside my body.  I was scared the whole time that it was going to catch on something and pull itself out.

 

 

 

 

 

OWW! MY BACK! – The Story Volume 2 – Part 8

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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.

Afterword

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.

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If I have to climb or scooter over my own mountains I will keep going, pushing, and striving to find relief from the body that has entrapped me in pain.

 

The Meeting – The Story Volume 2 – Part 7

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A note from myself before I begin:

I have been waiting a long time to write this entry.  This is the entry of my meeting with one of their vice presidents.  In this scenario there was no blow up like there was over the phone.  There was nothing said that was derogatory.  However, if you pay attention to the details and the subtle answers, you will realize why I was shaking with fear, anger, and worry for other customers of this insurance company who either did not know better, or did not have time.  I appreciate all my readers, but I ask, please share this entry.  Of any of them this is the one to share, not the most shocking and mind-blowing, but the most important to gain insight into the thinking of the head office of insurance companies.

You read it correctly in the last entry, I was denied my back shots, because I needed physical therapy according to their medical managers.  After they learned by reviewing documents from my physical therapy facility that I had 8 years of therapy, only then did they agree with the shots.  If I had not appealed and fought again, I would not have been granted the medical treatment I needed.  After it was approved, getting the back shots took two more weeks, because I had to reschedule due to the medical manager being the same person on duty when my appeals manager said they had enough information to overturn the denial.  It is policy I was told that medical managers could not correct their own mistakes.  Someone else had to approve the changes, and there was no one else working to approve, this insurance company was okay with leaving me on the floor writhing in pain.  So much so, my pain manager had to double my opioids to help me sleep and relieve the pain for that duration.  It seemed that the insurance company did not think about the opioid epidemic or addiction. Keep in mind their excuse was they wanted to make sure I was getting the right procedures that I needed, not to save money.  So, I lay on the floor those two weeks as stated, begging for relief.  Not even my tens unit helped (a device that sends electric currents through you to help relieve the pain.)  Please keep all this in mind when I discuss the meeting.

 

Frustrated, I lay on the floor after talking with my appeals coordinator, learning that I could not receive my back shots for another two weeks because the high and mighty medical manager could not correct himself with the new information that my coordinator received.  Not only did she have my word and claims, she had the physical therapy institution send her all of my medical history.  She had all the information right in her hands.  My approval for relief was within her hands. However, the insurance company policy stated, she told me, that a medical manager who denies a claim cannot approve it, even with the information needed.

I was appalled.  In my line of work if I made a mistake, we were encouraged to fix it on our own, not have someone else do it.  I told her that I will have to be on the floor two more weeks and all she offered was an apology and wished me well. To me it sounded like, “Due to our red tape and policies, you are screwed.  Thank you and there is nothing you can do, have a painful day.”

It was this call that broke the camel’s back.  I scoured the Internet looking for the CEO’s email address.  I could not find it.  It was not posted anywhere and I consider myself a pro when it comes to looking for information.  My old CEO’s email address was on their website and you could go visit him at his office anytime you wanted.  So, I ended up sending an email on their website on the “Contact Us” page.

Within a two days, I received a phone call from them.  It was the CEO’s administrator.  I voiced my concerns over the phone and she stopped me in mid-sentence.  She stated that they are another part of the company that concerns themselves with the doctors and patient procedures, my issues and concerns were with their second part of their company that handles customer approvals and claims.  I said, “Wow!, I do not think anyone knows that nor did anything state that on my search on the Internet”.  She said not to worry she will send them an email of our conversation and that someone from that part of the company will get back to me in a few days.

I found this to be suitable and ended the call with her, thanking her for her time.  A week passed and I received nothing.  Not an email, a phone call, a letter,  nothing.  I was not shocked.  I called the CEO’s administrator and told her they may work together, but they do not pay attention to her because I received nothing from the other company, even though both companies were under same corporate umbrella. She was not happy and told me that she guaranteed I will hear something soon as she was going to call them.

The next day to my surprise, I received an email from the lady who reprocessed my 2015 claims, and found that I needed to be refunded $785. (This was covered in The Story Part 1).  She stated she was aware I sent the email and that she will handle it.  I thought she must be the only one that handles the “shit” that comes through their system.

It took a few emails and about three weeks to nail down a date, but they offered to meet me at the same hospital my wife was working at the time. This facility was only 30 minutes away, whereas their home office was over 2 hours away.

I thought this was very kind, and told them I will meet them there in three weeks.

During the waiting period, I was finally able to obtain my back pain shots, (I will discuss this procedure in the next entry).  They seemed to relieve some of the pain.  When I woke up the day of the meeting, I was very sore in my back at the injection site and told my dad I will need my scooter to go through the hospital to get to the conference room that was reserved for the meeting.

Dad picked me up, transferred my scooter from my car to his and proceeded to the assigned hospital.  We discussed what we wanted to say and what points we wanted to make clear at this meeting during our thirty-minute trip.  By the time we were satisfied, we arrived in the hospital’s parking lot ready to go in.

Trailing behind my dad in my scooter, we entered the hospital at the main entrance and made a left turn towards the elevator to the second floor.  As we exited the elevator, we were greeted by the lady that helped me with my prior claims.  She knew who we were based on my scooter and the details I gave her about it.  I told her in advance it would be very easy to spot us.

She led the way to the conference room and told us the vice president would be with us in a few minutes.  As we waited we greeted each other and thanked her for helping with my prior claims.  Afterward, it did not take long for the conference room’s door to open, and the gentleman I had  been waiting to meet for a long time entered with his planner in hand.

He also was very nice and greeted us and shared a few pleasantries before we turned to the real reason we were there.  The meeting lasted over two hours, I will summarize the important parts of the conversation:

I did almost all of the talking for the two hours we were there.  I told him how his assistant helped me reprocess all of the claims in 2015 after I found 7 big errors, and that her staff found 5 more, for a total of 12 errors.  Most of the errors were processing the claim at a tier 2 level instead of a tier 1. A tier 2 level would put more financial responsibility on the patient due to the doctor or facility not being a priority participating provider.   I also shared with him that a person on their customer help line admitted that their tier levels were very confusing.  I then told him that I responded back that if I knew the difference, the people getting paid by the company should know the difference.  I should not have to waste my time auditing their work for free.

I then looked him in the eye and asked him, “What if I was disabled to the point I couldn’t understand your Explanation of Benefits or processing?  What if I was too old to comprehend what was done?  If I got paid back $700 plus dollars, how many members deserved to be paid back?  Even your own employees are admitting to the members that their benefit system is confusing.  Is that what you are going for?  I never had this issue with Highmark.  It was either approved or not approved. Also, at least in my experience it was 100% approved without a phone call.

After I paused, he looked down, writing a summary of what I was saying and without looking back up to me he stated that he knew that was an issue.  “HE KNEW!” I raged in my mind.  Did he just admit that they knowingly were ripping off their members, if the members did not understand the claim process and fight like I did?  In my opinion, this is exactly what he just said!  I paused before I continued on.

Second, the insurance company has to work on their image.  When I had told my doctors my insurance was changing to this company, all of the physicians, said, “Good luck getting your procedures approved”.  In one instance I had a doctor order everything he could when I still had Highmark just to make sure it was approved. I asked the vice president, “How do you think I felt knowing that it seems that my doctors are telling me that his company cares more about themselves than they do about patient care?”  Once again looking into his eyes I waited for a response.

He stated, “I know and we are working with them on that.  These are things that we have been hearing about for awhile.”

“HE KNEW!”  I screamed the words in my head, wondering why I was wasting my time and putting myself through this, sitting here in pain.  He knows the issues his company is facing.  I decided to move on to my next point.

Third, I thought the doctors were thoroughly mistaken when they anticipated there would be difficulty getting a second brain MRI approved.  After all, my first brain MRI went through with no issues.  I even told my doctors they were wrong for doubting the approval process. My new insurance company did not have a problem approving tests for their patients.  They only had an issue paying for them correctly.  That was until my second Brain MRI was requested by the same doctor stating it was a follow-up after an abnormal one.  I told him I received a denial letter and appealed it right away.  When I talked to the appeal coordinator she stated, that they do not look at prior medical records for the first approval, they look at the documents that doctor sent with the request.  She stated for MRI’s they even have a third party company help them make decisions and they do not have access to patient history.  I then asked  her how can they know what is best for me if they are denying claims for tests that doctors who do know me better think are necessary?  She had no answer, but had stated they wanted to make sure I was  getting the right care I needed.  After hanging up, she called me the same or next day and stated she received the approval.  She added that the medical manager looked at it and agreed it was a follow-up  and he had no idea why it was denied. “That’s just great”, I thought.  I told him after the second brain MRI was done they saw my tumor had grown double in size and now there was a second tumor.  What if I hadn’t fought it?  What if I hadn’t followed up?  What if I had accepted the claim denial, had never gotten the test done, and the tumor had grown over 10 mm and I had started to lose my sight?  I asked, “Do you know how many senior citizens take your first denial and then never get the test done?” I paused again waiting for an answer.

Once again, I had the same response.  “I know, and I am sorry.”

At this point my voice was getting hoarse.  My dad had sat in his chair for over an hour, quiet, but he knew and could tell the pain was getting to me and that I was beginning to lose my voice.  He looked at the VP and stated, “My son knows your company inside and out.  However, other people do not.  He had to make plenty of phone calls to know how everything worked, he had to go through hell with his pain, but he learned. We know that your company might be taking advantage of sick individuals that cannot review their claims, seniors that might not understand, or people who just do not know.  You might be able to get away with it 99% of the time, but you’re not going to get away with it with us.”

I thanked my dad for the break.  I said fourth, your company denied my back shots after it was suggested by an ER doctor and a spine specialist.  Before I was able to see that spine specialist I first went to the ER.  I was in so much pain I had no choice and could not wait for the appointment to see the specialist.  My dad took me to your insurance company’s emergency room.  In about an hour a doctor came into the room and seemed to stall at ordering an MRI.  He stalled until I threw on the hospital bed 120 plus oxycodones in a bottle and told him I do not need your pain meds,  I need your MRI.  Four hours later, I finally had one done.  It showed  I have bulging disks, a not moderate, but severe arthritis on my L4 and L5 vertebrae with minor arthritis going through the rest.  The ER doctor stated I needed back shots, the specialist I finally saw agreed that I need back shots.  However, your miracle medical managers stated I did not.  The same medical managers who did not know me or understand the situation I was in.  They wanted me to go to physical therapy first.  Well, after some very angry phone calls to my appeal manager, it was approved, and she told how it couldn’t be approved until another medical manager was there because the one who denied it was the only one on duty.  I stated, “How, dumb is that? A medical manager cannot approve his own mistake.  In my job we fix our own mistakes.  I mean you have to be the dumbest company in the world to have a policy like that!”  I waited once again for a reply and then I got one, one that almost threw me to the floor.

“Well, what we are doing and what we need to work on, is not giving too much information to the patient.  It shouldn’t have been said that another medical manager is needed for approval.  What should have been said was we are looking into it and we need more time for approval.  That way the patient does not get as upset.  So did you get you shots then?”

“Yeah.  Not until I suffered for two more weeks on the floor.” I replied.

He just shook his head and lowered it and honestly to me seemed shocked over everything I told him.

By now I had I realized he was already well aware of the existence of all the things that infuriated me. He admitted they knew about processing errors.  He admitted to the possibility of senior citizens being ripped off, and now instead of apologizing right away, he explained they need to train their employees not to reveal some of their policies.  I was just stunned, I mean stunned.

My voice was gone at this point anyway and we were there for two hours, so I ended the meeting.  We got up, he assured me he was taking all these notes back and reviewing them with everyone.  I thanked him again for driving down and he left.

Dad and I stayed behind for a minute just shaking our heads in disbelief.  I bet my dad that from here on out I would not have any trouble getting anything approved.

I came home to Amanda, who did not want to go since she worked there, and told her everything.  She did not say anything, just shook her head like I did and held me. She could see how frustrated and exhausted I was.  My pain level was off the charts from sitting there for over two hours.  I took a few pills and went to lie down, hoping that I at least helped one person with the meeting I just had.

Afterword

I have nothing really to say.  It was that bad when you looked between the lines.  Everyone was very cordial.  He was very nice.  No one’s temper rose to the point of being disrespectful.  If you did not read between the lines you could actually say it was a great meeting, he listened to every word I had to say.  It honestly scares me to know how many people are vulnerable to being ripped off, and how many people might not be getting the medical care that they need and could have.

 I once again ask you to share this post.  I want people to know that they need to fight for their medical care.  That if they honestly believe they need a procedure or test, that they should appeal if they get denied.  Do not let insurance companies or doctors dictate your care.  Learn as much as you can about your ailment and dictate your care for yourself.

Thank you all for your continued support.

 

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There were multiple pictures I could have posted for this blog entry.  I thought, the one person that deserves recognition for always being there and being supportive is my wife.  So, I once again want to show the world of the person that gives me all the support I need.

 

My Insurance Strikes Back – Pew Pew –The Story Volume 2 – Part 6

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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
the joints.

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
did not.

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….

Afterword

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.

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An all to familiar word when dealing with my insurance.  However, I did not let it stop me.

 

 

Back MRI – The MRI My Insurance Couldn’t Deny –The Story Volume 2 – Part 5

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A note from myself before I begin:

It’s 2 a.m. I fell asleep at 11 p.m. for the night.  The rain is causing my body to feel aches from head to toe.  I decided to wake up, pour a hot cup of cocoa, pretend I have a fireplace, picture myself dressed in a smokers jacket holding a pipe, and begin to weave what for me seems like a tale of malice:

Amanda brought me the phone and I contacted my PCP (primary care physician).  It was on a Thursday, almost a week after winning the brain MRI appeal.

I lay on the floor in absolute agony.  The pain went up and down both legs and into my lower back, as if an evil being from within was striking my body with lightening.  I couldn’t move and Amanda did what she could.  I loathed going to the ER.   I was told by the secretary that she would take my message and pass it along to my doctor.

I knew that she would.  This is one office in which the doctor, not a staff member, actually gets back to me.  In this way he keeps me as a patient.  He did not call me back the same day.  I did not expect him to, as he was doing his rounds at a local nursing home, and from what Amanda told me from prior experience, can become very busy.  So, I decided to just lie there, like a fish at a bottom of a boat, flapping  my extremities once in awhile trying to find a position that led to the pain being less like being stabbed by a dagger and more like being jabbed by a butter knife.

That night I was dosed up with enough pills to take down a rhino.  I woke the next day in the same position on the floor that I had been in the last 24 hours.  All of a sudden the tumors in my head felt like an afterthought.  As the morning hours went by, I was not disappointed by my PCP.  He called and we talked.  I told him I needed an MRI.  An X-ray wouldn’t do.  After many years I knew what I needed.

He replied that my insurance would never approve an MRI order from a PCP.  It needs to come from a specialist.  We argued back and forth, but I could not get him to submit the MRI request because he was certain they would require me to go see a specialist and would not approve it.  He went on to explain, the denial would increase the paperwork that would need to be filled out which in the end I would need to seek out a specialist anyway.  Convinced he was correct, and experiencing what I went through in the last few weeks, I agreed it would be denied and ended the call.

I started to call specialists in the area.  The earliest appointment I could find was months away.  I called my PCP back and he stated he could put it through and he would get back to me.  A few hours later he reported that what he had anticipated was true: that I needed to go to a specialist and the MRI was denied.  I thanked him, and then pretended in my head to slam down the phone in disgust.

This immediately provoked another phone call to my appeals coordinator who had handled the request for the Brain MRI.  It was getting late and I knew she wouldn’t pick up, so I left her a message:

“This is Doug Donnangelo again. Your company once again is not looking out for my health and has denied an MRI for my back that my PCP tried to get through.  I have been lying on the floor for two days, not being able to move.  At this point I have met my out-of-pocket expenses for the year.  I will now proceed going from ER to ER until I get an MRI.  I am going to cost your company much more money than what they were trying to save.  Have a good night.”

Amanda was already working in the ER and it was getting late at night after the phone call.  I could barely move, and tears were almost rolling down my face. This was after taking an oxycodone to dull some of the pain.  I reached out to my father who lives across the street and asked him to take me to the ER.

Dad, who taught me how to never back down and be relentless, drove his SUV around the corner and up the street to pick me up.  I called the hospital, something I rarely do, and told Amanda we are coming for an MRI.  She stated hardly anyone was there and that it might be a good time to come if I was in that much pain.

It took 20 minutes of a very agonizing car ride,  sitting up.  But once we were there I was able to check in and get put into a room at 9 p.m.  Amanda stated she could not help me since she was family, and told my dad that she would be taking me home, and thanked him for dropping me off.  Dad said good luck, and turned around and left.  I could see the disgust in his face as he contemplated this new pain over my body.  The spreading of whatever this was never seemed to end.

Amanda warned me that since it was late evening, the doctor would have to ask me questions, and that they could think I may be fishing for pain drugs.  She left the room and turned out the light.  Within the hour a lovely nurse came in and took my vitals and asked me preliminary questions and told me the doctor would be right in.  That usually meant between one to ten hours.

As the hour went on, they were getting busier and busier and ten o’clock passed into 11 until the doctor came in.  He was a little older, longer hair, and had a  Dr Know-it-all face and attitude.  He began asking me questions about the pain. When did it start, how bad is it, etc… I looked at him and stated, “I know my body.  The pain is bad, and I am not fishing for pills.”

It was as if being married to Amanda, an RN on staff, meant nothing. But I could understand why, so I grabbed my bottle of prescription oxycodone out of my pant pocket and threw it on the bed.  I said, “There are over a 100 tablets in the bottle, trust me, I don’t need your pain pills.  What I need is your MRI.”  He looked down at the bottle and said, “Well, you certainly do not need pills. I will see about the MRI.”

12 o’clock went by and he came into my room, interrupting The Running Man with Arnold on TV.  He said he finally got the MRI approved, but he did not think the results would show anything, and as soon as they had an MRI machine available he would get me in.  He still seemed smug, as if he were thinking I was just another patient exaggerating my pain and making a big deal out of nothing.

The movie ended with Arnold saving the day once again.  I watched it from beginning to end, minus a few interruptions to have my vitals checked and chit chatting with the wife.  My back was not feeling better, but the bed was soft and helped a little.  As the fifth maybe even sixth hour went by I was injected with Dilotin, a pain drug to help me get through the MRI on my back, and finally went down for my test.

The drug did not take effect, I must have been used to pain medicine – but I did not tell anyone. I just wanted it over with.  I was wheeled down to the MRI room, where it looked to me like the first MRI machine ever created was waiting to scan me.  This was the first time I thought, Hopkins truly has better equipment.

The MRI took another hour. Time was starting to slip away as I was getting tired.  I couldn’t sleep because my lower back felt like I was lying on hot coals.  The medicine he gave me had no effect during the whole session.

I was finally wheeled back to my room to wait for results.  It was 3 a.m. or at least around there maybe 4 a.m. when Amanda walked in and stated she could not say anything, but the pain wasn’t in my head.  She looked at my results and shook her head and stated wait till the doctor comes back in to explain.

Dr. Know-it-all came in a few moments later and stated that he was surprised by the results.

He stated my L4 – L5 vertebrae have severe arthritis and I had bulging discs.  He said I will have to see a specialist.  He added I will need shots into my back to help with the inflammation.  He also stated that my back shows some other issues, but nothing in the results that was worth worrying over except what he had described.

I did thank him.  The staff was very nice, I saved a few months waiting to see a specialist by going to the ER and getting the MRI pushed through.  I knew it wasn’t in my head, at least regarding my back pain as well as my legs.  I had concrete evidence I could take to a specialist, instead of going and having the MRI ordered and waiting again.

By the time  I was discharged, Amanda was done working, she took me home, and I popped a few pills.  Later, I talked to my pain doctor and he increased my dose and told me to continue what I was doing.

I made a phone call to my PCP and left a message about the result to inform him and to schedule a specialist at OIP, the place where Dr. Flash works, the doctor who performed my first operation on my right ankle.  My insurance really limited me on which doctors I could see in the area.  I had no choice, I had to go back to OIP if I wanted maximum coverage.

The last thing I did was call my appeals coordinator and gave her the results. I told her this is the second time in a week that my insurance tried to get in my way, and the second time they were wrong, and that I hope they enjoy paying the ER bill…

Afterword

 The battle continues, I have to say it never ends.  Well one day it does, but for now the battle was on.  I went from one battle to another.  It was taking its toll on me and actually it still is.  This entry is another example of doing what you feel is right.  Doctors truly went from GODS in my mind to guessers.  Insurance companies went from ambiguity to a road block.  However, none of this was going to stop me from trying to feel better.  Nothing.

We are only a few entries left to present time. Once I am caught up, I will be expanding my blog with more information to help people understand insurance, EOBs, disability equipment, and much more.

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My spine MRI from that night.

Brain MRI 2 “Insurance Company’s Attempt at Money Over Health…DENIED” –The Story Volume 2 – Part 4

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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…”

Afterword

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.

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If you mess with the bull, you’ll get the horns. Geisinger was the only insurance company I ever had issues with, though they tried and tried to deny my procedures or process my claims incorrectly. They lost each time I fought them.