Month: January 2017
I went to the endocrinologist nearby and at Johns Hopkins to get answers about my hormone levels and I ended up with more questions about these anomalies in my brain. I discussed these results with my PCP and pain manager and they showed more concern about them than either endocrinologist did. No matter what they said, there had to be a connection between the anomalies and my hormone and blood levels, but I didn’t have time to worry about it. I just put it on the list of things wrong with me that I will check out later.
My focus had to be on my next test which was the EMG at my pain manager’s office, and the surgery that is coming up on my ankle. I did not have time to follow up on my anomalies if two doctors said it is fine for now. I remember walking into his office. It was on the second floor of a building off an exit of a busy highway in our area. We always got to park directly in front of the building. The handicap tag did come with it’s much-needed advantages.
I had no idea what to expect. I was too busy with my brain tests to look up the EMG test on the internet. I walked into his waiting room and was immediately called back into the room with Amanda. As soon as we entered the room I was told to remove my clothing and put the robe on. It was getting to the point that every time I go to see a doctor, I had to strip.
I rolled my eyes at Amanda, sitting in the guest chair along the wall, as soon as I heard the instructions. After the nurse left, I stripped down to my underwear and put on what seemed to be the smallest robe that was made. I barely could get it on and tie it around the back. We looked for bigger gowns in the room, but none was found and I was not going to go in the hallway and ask for another one. Amanda just looked at me and said it is fine for now just sit on the table.
Following my second set of instructions, this one from my wife, I sat on the doctor’s table in my robe/corset. Reprieve came about fifteen minutes later when the doctor entered the room. He sat down in the little round stool by the door and went over some personal questions. I answered each question promptly. Some had to deal with the pain, feelings in my leg, and the normal what are you allergic to questions.
Once done, I was instructed to lie down on my belly with my legs toward the door. In front of me was a machine with a three inch green and black screen, which looked like it was made from 1980. Coming out of the back were multiple octopus tentacle wires, that I was sure were going to be connected to me and below the screen was a big dial, which I assumed was a power control mechanism.
I couldn’t imagine what was about to happen to me, but the anticipation only lasted a second as the doctor walked towards the head of the table.
“Okay Mr. Donnangelo. I am going to place pads on you in multiple places along your leg and back and inside your thighs. You are going to feel multiple shocks. some of which will be strong and might hurt. If you need to stop, tell me. I am skeptical about doing this around your right ankle since it is already in pain and injured, so we will proceed and see how it goes.”
“Ummmm…okay”, I responded, feeling as if this was a bad idea.
I looked over to Amanda. She was staring at her phone, probably on level 454 on Bubble Cat Rescue. I assumed this was basic for her, working in a hospital. However, it was my first time going through it, and the only thing I could do was to brace for the pain.
“We are going to begin, you will feel a couple of electrical shocks in a row”, he stated.
The shocks went through my legs. It was like touching or putting your tongue on a battery and getting a jolt from it. It was not the best feeling in the world, but I was able to handle it for the few minutes it took.
“Okay that was good, this one will be about four shocks, they will be at a higher level. If you need me to stop let me know, it will be around your right ankle.”
I appreciated the warning and I gripped with white knuckles in preparation of what was about to come. “Okay here we go.”
I tensed and winced as the first shock went around the already wounded tissue inside. The second shock hurt my right leg worse than expected. I lifted my left leg, which was not held down by the doctor, into the air and slammed it down onto the table. I was determined to get through it, I wanted an accurate test. The following shock was right by the scar left from the prior surgery in the year.
I screamed profanities.
“Uh-oh, I got him swearing”, he stated, turning to Amanda. He then said toward me, “Don’t worry about it. I hear much worse. Are you sure you want to continue?”
I wanted to say no. My leg felt like it was shredded into pieces. It might not have hurt that severely to another person, but having the wound present made the pain feel exponentially worse.
Against my will I told him yes.
“Okay, we are now going to do your lower back. You will feel electrical shocks followed by needles pricking you. It will not last long and then it will be over.”
As promised, he continued the testing on my back. Each press of his instrument sent either a stab or a current through my lower back. The pain was not as bad as the ankle, but it still was very uncomfortable. I swore two more times when he hit the L4-L5 area of my spine, but as the pain calmed down I noticed the shocks and the pin stabbings had ended. “You did really good. Let me wipe the gel I used off of your legs and back, and then you can sit up.” He looked toward Amanda again, “I swore he was going to kick me in the face. I am surprised we were able to complete the test.”
Amanda looked up and agreed (all routine for an RN that works in the ER of a hospital) and then looked back down at her phone… level 455, I thought.
I was glad it was over. The pain was strong, but it didn’t last long. I sat back up on the table recovering from the torture I just faced and turned my body towards him.
“We are going to have to wait for the results, but I can tell that there is something there in your right leg, something is off, it could be the reason the pain is so bad, there is a problem, but let’s wait for the results. You can get dressed and go when you are ready. You did good .”
“Thank you for torturing me”, I added. We both laughed. I got out of the ill-fitting gown and put my clothes back on. I grabbed my crutches and stood there ready to leave. Level 466 I thought… “Amanda let’s go”
“Oh, you’re ready, let’s go.”
I grabbed my crutches, thanked the nurses and the secretary, and headed to the first floor. I walked out of the building, opened the passenger door, sat down, took a deep breath, let it out, sighed, closed the door, put my seat belt on, looked at Amanda exhaustedly and stated, “Let’s go home, we have a surgery to prepare for….
To this day, that test was the most painful test I have experienced. It is an important test to determine if a patient’s nervous system is working correctly, but it is not something I would sign up for again. The doctor also stated that there are so many nerves in your system it would be impossible to test them all. The test only tested the biggest ones. I had the endocrinologist appointment out of the way and the EMG out of the way. I had no answers as to why my ankle was deteriorating even with donor parts. I had no answers as to why my hormone levels were off. I also had no answers about what the anomalies were in my brain. The only thing I could do was to press on…
I followed through with the advice of my PCP and I went to the Endocrinologist. I really did not have a choice. I was on a prescription drug for my hormones and after using all of my refills, I was now not able to obtain the same prescription unless I went to see him.
On the day of the appointment, I found myself in a regular-sized doctors office, with three chairs, and a comfortable leather chair in the corner for the patient with a table of magazines beside it. On the other side of the table was a smaller steel chair with little padding for a guest, and beside the desk was your average round black swivel chair the doctor sits in.
The dread of knowing what was going to happen weighed on me more as each minute passed by. I was once again going to have to start all over with my story on why I was on the medication to begin with, and I was going to have to go through the routine checkup of turn your head and cough – a common medical practice that is not enjoyed by most men.
After ten minutes passed, the doctor, who was a lot shorter than I am, entered the room with his laptop. He asked all of the usual questions such as: allergies, medication, and why I was there. As I finished answering the questions, my dreadful concern from before came to reality when I saw him reaching for his gloves. I already knew I was OK, I had had the test done multiple times, but I had to go through it again.
After the short uncomfortable procedure, we finally got down to business. I stated to him that I needed my hormone medication that had been prescribed by my old PCP who had performed all the necessary tests; however he had closed his practice. My new PCP stated I had to come see you to get it.
Without missing a beat and sounding like a broken record he stated, “Doug, you’re too young to be on this medication. Most men are not prescribed this until their 50s or 60s.” I stated back, “I know that, but here we are, and if you can tell me why I need it, that would be great, because my last doctor could not and now maybe you can.”
After the comment, he stated most reasons are unknown and that many men as they get older find benefit in the medication, but at my age I should not be on it. He then added I had to be off the medication for a few months, so he could get an accurate reading of my blood levels.
Hearing this new information, anger started to grow deep inside me. I told him that I cannot be off the medication. It will mess with my mind and the way my body feels.
He then literally refused to write the script until two months passed and I took the blood tests.
I told him, “Fine, whatever I need to do!” Then I grabbed the script from his hand, and left the office without checking out.
I went home mumbling to myself that now I have to go two months without my medication and I have a surgery coming up. Life was becoming a bowl of cherries – if it had not already been one!
It’s impossible to write down how I felt during those two months. I did not sweat and did not have panic attacks, but I could feel my body change instantly. I grew angrier and angrier as each day passed. I could feel depression overcoming my mind. Amanda noticed the changes and saw my attitude and composure were becoming much worse. The two months felt like years. Not having a hormone I knew Idesperately needed coupled with the pain in my ankle made me want to tear my hair out.
The two months went by and I took the blood tests he demanded and my follow up appointment was finally here. I entered his office like a raging bull. I yelled at him as soon as he entered the office, “You had my blood test back for two weeks and you still did not prescribe my medication. It has been over two months and I have been going through hell inside my mind. How would you like it if someone ripped out all of your hormones, told you to wait, and then when the waiting period had elapsed your phone calls were ignored?”
He did not seem surprised I was so out of balance. He did the best he could to calm me down, and pulled out the test results out of my folder. “Mr. Donnangelo, you have a strange deficiency.”
“I know that! That is why I was on the drug!” I interrupted.
He continued: “You have a strange deficiency in your hormones. Your levels are really, really low.”
“Fine. Maybe we can find out why, but can I have my prescription now?” I sneered back. He was telling me information I knew years ago. He did not have to put me through two months of hell to find out what I already knew.
“Unfortunately, I cannot prescribe your medication. . . .”
“We need to do more testing. This blood test shows that your pituitary gland is not sending out the signals that it is supposed to be sending out. It is like it is not even there. We may have to do an MRI, but I am afraid I do not think your insurance is going to cover it. I do not know if I should even put it through, because only 5% of the population has any type of tumor on their pituitary gland.”
I could not tell you how angry I was getting, but I can tell you my coat was coming off when I jabbed back at him, “Listen here Doctor, I did what you asked me to do, I went off the drug for two months. I know I need it, I have proof I need it, now give it to me. “ It was as if I were a drug addict on a street corner. “Also, if there is a 5% chance that something bad can be inside me, I guarendamntee you that with my luck it is a 100% chance that I will have it. You will put that MRI through and by God if the insurance company tries to block it, I will roll over their ass like they have never seen before.”
With this verbal attack the doctor did not expect, he stated that he still wanted to wait to see if the MRI was approved in case my problem was bigger than what he expected. He said he will write the script for the MRI to be done right away and that he will see me in two weeks.
“I will give you two more weeks, but by then I will be back on my medication, so I can feel normal and better.”
Once again I left the office in a rage without checking out.
The two weeks passed, and the MRI was done within that time. During those two weeks, I think Amanda worked more hours than she ever did to avoid being home with me. My new friends in Eorzea also knew something was wrong as I grew silent in our chat groups.
Once again, the two weeks seemed like six months. I felt like I was losing my mind. It is hard to describe the impact of not having an important hormone in your body, but when your body goes into shock from not having it, it was a worse feeling than a deteriorating ankle.
Two weeks passed….
I sat in the comfortable leather chair, probably the only thing that gave me solace in that office. I started hating the doctor and that office, but I knew it was my only channel to get my drug back, and I swore revenge on my PCP who made me go through this.
He came in. Same old yellow folder, a folder that was growing thicker with paper, and his laptop.
“Mr. Donnangelo, I will get right to the point. Your MRI that was approved by your insurance…”
“Better damn believe they were going to approve it after I got off the phone with them.” I chimed in.
“. . . shows that you have a small anomaly/tumor on your pituitary gland.”
“I told you! 5% chance equals 100% chance when it comes to me. Now what if we did not get it done because you were afraid to put it through, because the insurance might not approve it?”, I scoffed back at him.
During all this he remained very calm. He probably had training in dealing with difficult patients, but he still deserves credit in the way he handled me. He continued, “But that doesn’t explain why your pituitary gland is not working. The anomaly/tumor is too small to have an impact. We are going to have to check it next year to make sure it has not grown, which most do not. I actually do not know why you have a deficiency. I am going to prescribe you your medication, because you do need it.”
“Finally! You wasted three months of my time, took me off medication, the PCP would not give me my medication, told me I shouldn’t need it. I spent tons of money on an MRI to find out I have an anomaly on my pituitary gland that only 5% of the people in the world have, just to end up on the medication my old PCP gave me a long time ago without all these tests. And what did we learn and what can we do about it? NOTHING! I have a pituitary gland not sending out signals, you find an anomaly on it, but nope, that is not it and now I can have my medication. THANKS. Not that I did not have enough to worry about with surgery coming up.”
He took it all in stride. I now admire him for it, but back then I was looking for a reaction. He prescribed the medication I already had been on for years, and within a week I felt back to normal.
He stated before I left, “Let me know if your new insurance company approves the medication, they are much stricter than your last one.”
Before leaving the office I looked at him and stated, “With our documentation you do not worry about my coverage. I will handle the insurance company, you just prescribe what I need. I assure you the insurance company will not say no to me.”
The good news was the insurance company did not decline my medication like they originally did the MRI. I was finally home free.
I did stop in my PCP office later that week to let him know all of the results and everything I went through. The only reaction he gave me was that he was surprised I needed the medication at my age and did not understand why my body was acting the way it was.
It felt like I had been deprived of my medication for years, but it was only for a few months. I had another follow-up appointment with the endocrinologist. I was more civil and he could see I was feeling much better. He had no problem prescribing refills as long as I agreed to have blood tests done, making sure my dosage was not too high, which was OK because I had to do that before with my old PCP.
With this behind me, I prepared myself for my upcoming EMG appointment at my pain manager’s office, and within a few weeks after that, surgery #6 at Hopkins. It was a busy few months, but at least I was feeling normal. Whatever that is….
I sent my MRI results to Johns Hopkins since I was already a patient there. However, they did not give me any new information that I did not know. They stated the exact same thing, they did not know why my pituitary gland was not sending out signals and they stated I have to keep an eye on the anomaly to make sure it did not grow.
I was angry not only from being off my medication and changing of the chemicals in my head, but I was mad that the doctor seemed to bow down to the insurance company and what they may or may not approve. In later entries I will go into more detail on how I got other procedures and medications approved after they were denied. I never backed down once to the insurance company and I never lost yet. Do not let anyone stand in the way of your feeling better. Fight for your right to feel better. My fight continues on and once again I ask you to join me….