I am a chronic pain patient. I am a UC Davis Health (in California) chronic pain patient. I have been living in chronic pain, and seeking various ways to treat it, for over a decade now. While the story of my exact type and cause of chronic pain may be different from others, the insufferable, neglectful care and treatment by the medical system that I have received is unfortunately a common scenario for those living in chronic pain. Here is my long and complex story…

Part 1: Background

I was born with scoliosis. My parents opted to not treat it due to the congenital heart defect that I was also born with that had me having massive heart surgery by the time I was nine. Any other medical issues, they deemed, were just too much to deal with. Unfortunately, I was not born with the type of scoliosis that stabilizes after a certain point. No, mine was degenerative, meaning that as time progressed my spinal curves (that’s right, I was unlucky enough to be born with a double spinal curve) would get worse and worse, and continue to compress. After a rapid increase in back pain, the recognition of my condition being degenerative, and countless numbers of treatments, including injections, ablutions, physical therapy, acupuncture, etc., I ended up with one option, spinal fusion surgery. My wife and I traveled across the country to multiple spine specialists who all came back with the same result: in order to address my condition I would require a T2-S1 spinal fusion with six rods, including several anchoring my spine to my pelvis. So, left with no other option, on August 5, 2022, I underwent a 13 hour spinal reconstruction and fusion surgery.

Part 2: Don’t Worry You are Fine (Or Maybe an Addict)

My surgery was brutal. In fact, brutal is an understatement. My body would never be the same, my mobility was limited, my gait was completely off, I could no longer bend any part of my back, and then there was the pain. There is no proper way to describe the post-op spinal fusion pain I was feeling. I mean my entire back was cut open, spine manipulated and then lined with metal. Even my surgeon, in my first post-op appointment, acknowledged that what I had been through was equivalent to being hit by a bus head on and surviving. 

The first few weeks of recovery were indescribable. The amount of pain I experienced was excruciating. I think back and sometimes cannot even understand how I made it through. Pain medication was an essential part of my recovery, as it allowed me to make it through, both day and night. Each week for the first two months of my recovery, my wife was to call in to the UC Davis Spine Clinic to refill my pain medication. She would provide them with the dose I was currently on and then indicate where I was in regards to my pain levels. Everything went along fine the six weeks or so, at which point my medication was substantially reduced from 10-12 pills of Oxycodone 5mg per day to four pills of Norco, 10-325mg, a day. This Norco prescription was my pre-surgery pain medication prescription, one that I had been on several years prior to my spine surgery. There was absolutely NO way I was at a pre-surgery pain level. This reduction in pain medication was made by Nurse Practitioner Colleen Weaver with no conversation with me about the pain I was experiencing. She actually went against the direct orders of my spine surgeon who recognized that I was still in pain and needed proper medication to aid on my road to recovery. My wife called the Spine Clinic to report the prescription and the lack of communication with me about my pain level, recovery, etc. It was a unilateral decision that she made because she wanted me at my pre-surgery opioid levels. 

Nurse Practitioner Weaver did call me to discuss the pain medication prescription she placed. During that conversation, which my wife was a part of, Nurse Practitioner Weaver indicated that she did not understand why I was still needing a higher dose of pain medication and that I should be doing better by now, as most of her patients experienced. She did not seem to care that my surgery was extremely different than most of her patients. In fact, it was my understanding that the complicated nature of my surgery was not one that Dr. Javidan or Nurse Practitioner Weaver had seen very often, if at all. She went on to inquire if I was addicted to the medication because of my want for pain medication. To make matters worse, since the call was on speaker, my teenage son walked into the room at the exact moment she called me an addict. What an awful experience to have to have your son hear a medical professional, who was supposed to be helping you in your recovery, demean you in a way that underscored everything that you went through in this brutal, life-changing surgery only two months post-op.

After this conversation, I felt broken. How did this lady, who was a Nurse Practitioner, not understand that I could still be in an extreme level of pain after this immense, life-altering surgery? How could she actually say that I was an addict? I was still so weak, in so much pain, adjusting to life with a “new” body. Simply, why? This experience was so unbelievable and rattling that my wife and I decided to file a complaint with the orthopedic surgeon’s office. While we did receive a call back from the staff manager, it was not very productive. She simply took the side of the Nurse Practitioner and stated that patients “like me” are usually referred back to their primary care physician for pain management. And just like that, I was transferred back to the care of Dr. Justin Curole, my PCP, who had managed my pain medication, with no issues, prior to my surgery. 

Part 3: A New Hope Dashed By The Need for Results

Two months after my surgery, I was back under the care and supervision of my PCP for all of my pain related issues. I was still receiving physical and occupational therapy to aid in my recovery, but my pain management was no longer going to be addressed by the surgeon who performed this massive, body-changing surgery. In my first visit with Dr. Curole, he acknowledged all of the pain I was still experiencing post-op. This was great news. I felt like I was going to finally have someone who understood what I was experiencing and feeling. In fact, even prior to my surgery, he was the one person who had indicated that I would most likely still be on some sort of pain management regimen since the surgeon was only looking at a 50-70% improvement in my situation at best. In that appointment, I was told, point blank, that the surgeon wanted me under the 40mg of Norco that I had been on before surgery (like for many years before surgery) so that he could show that the surgery was successful. Dr. Curole went on to say, quite non-chalantly, that this was a reasonable expectation. What?!? Hearing this, I felt like someone was punching me in the gut. Yes, I understood that my surgery was performed at a research hospital. Yes, I recognize that the surgeon wanted a “successful” surgery. However, NO ONE was acknowledging my reality of pain. At two months post-op of an extremely brutal surgery, I could not even think about my goal of getting down on pain medication. I was in so much pain at that point still, and I just wanted to have it managed. A crazy request? No! A sad reality that the success of my surgeon’s spine surgery was put as a higher priority than my health and overall well-being? Yes! I had become just a statistic, a case, for him to hopefully brag about, gain prestige from, and the UC Davis medical system to get more research money from. In that moment, it became clear to me, that I did not matter, only the success of my surgery did, and success was being measured in how much opioids I was using for pain management. 

Part 4: Someone Wake Me Up, I am Living in a NIGHTMARE!

For close to nine months, my recovery was running fairly smoothly (well as smooth as can be expected for the degree that my body had been altered and the level of pain the surgery had caused). While some of my original, pre-surgery problems were no longer present, I was, unfortunately, experiencing new pain, immense neck pain. My surgeon at my six month post-op visit acknowledged that the area where the fusion ended (at the base of my neck) would now be taking the brunt of all of movement, action, etc. of my entire spine, which could result in some pain. Some pain?! The amount of pain that this new issue caused was beyond intense. My neck was so painful that looking slightly downward while walking (which I had to do for safety because my gait and walking ability was completely different with my straightened, fused spine) was making it difficult to lift my head up again. I would often have to lie down in bed for quite some time to seek relief from this pain. And this was on 60mg of Norco! It was not a reality to come lower than that with my new pain post-surgery.

However, even on that medication, ensuring that I would receive it each month was a weeklong experience of nail-bitting anxiety. Per UC Davis’ rules, my wife ALWAYS would call in to request a prescription refill five days in advance of when the prescription was due to be filled. Almost every single month, Dr. Curole would wait until the very last day, in the afternoon, and after repeated phone calls, messages, and his own staff, including my patient advocate, having to get in his face to get the refill sent to the pharmacy the day that it was due. None of my other prescriptions were like this; they were always sent to the pharmacy well in advance to be filled on the day they were due. This situation of delays had been repeated for months, and one time left me in a terrible situation, a true nightmare!

Friday, July 14, 2023 was not a regular Friday for me. My Norco prescription was due that day, as I was to be out that evening per my medication schedule. In the morning, I noticed that my prescription had still not been sent over to my pharmacy, so I called Dr. Curole’s office. They assured me that it would get filled that day, so I waited. I waited and waited. My wife called back in the early afternoon, but got the same answer, it will be filled. Right before 5pm, I received a message that the prescription had been sent over to the pharmacy. I headed over to the pharmacy to pick up my pain medication that evening, because we were getting ready for a family trip to Canada a couple of days later, and we had things to do Saturday morning. When I got to the pharmacy, they informed me that they did not have the medication in stock because of a Norco shortage, and did not know when it would be back in stock. The only solution, they informed me, was to have my doctor send the prescription to a different pharmacy that had Norco in stock. They were unable to transfer the prescription because it was a controlled substance. Frantic, I called Dr. Curole’s office, well aware that it was after 5pm, but I still had to try. No one answered. I sent an urgent message through my online messaging system. Nothing! I called the after hours number for UC Davis and was told that my two options were to 1) wait until Monday to get this sorted out, or 2) go to the Emergency Room, as a doctor should be willing to send a prescription for the weekend to a different pharmacy since my doctor was not available to do so. There was no way that it would be safe for me to suddenly be without my pain medication the next morning, for a variety of reasons, so off to the ER we went. 

When we arrived at the ER we knew that we would have to wait, it was a Friday evening at the ER, but thought that the process would be relatively straightforward and easy. I am a documented chronic pain patient with a long history of opioid pain management. It can also be seen that Dr. Curole called in the medication. They also could easily call my pharmacy to verify the fact that there was no supply and the prescription could not be transferred. Easy, right? Unfortunately, it was not. After a few hours, explaining the situation with the doctor, the doctor verifying all of the facts, we left the ER with a new prescription sent to another pharmacy that had the supply. I would be okay, especially since we were leaving on our trip Monday morning. We went to the new pharmacy, one I had never been to before, stood in line, and asked for my prescription. Then the pharmacist walked over to my wife and I. She stated she would not fill the prescription because there were too many opioid prescriptions on file that didn’t match dates (because the prescription Dr. Curole sent that didn’t get filled overlapped with this new prescription from a different doctor). This pharmacist, despite going over the ENTIRE situation yet again, stood firm and did not fill my Norco prescription. She even told us that we would be hard pressed to find a pharmacist who would. Another devastating blow! We called the ER back, explained to them what had happened at the pharmacy, and they told us to come back in the next morning to get everything set because the doctor who saw us would not be back in until the morning. 

This was a nightmare! A true nightmare! Like the type of nightmare that you wake up from thinking “thank goodness that didn’t really happen”! But it was happening! It did happen! And it was just the beginning…

The next day we went back to the ER around noon because that was when the doctor was supposed to be in by. We also needed the morning to get our kids situated. That’s right, we have three of them, and they also needed to be taken care of during this entire mess! When we arrived, we got to the check-in desk, explained the situation, and were told to wait because that doctor was not coming in today so someone else would need to see us. Seriously?! We got called back after some time and had a seat in the hallway while we went over the situation yet again. My belly was poked and prodded, I was asked about the sweat on my forehead (like I was in withdrawal or something…no, it was a hot Sacramento day and no amount of AC could combat the weather and my nerves being shot from this whole experience). We waited and waited, spoke to a doctor, waited some more, and finally were told that the prescription could be filled at the UC Davis hospital pharmacy right down the hall. So while my wife took care of my discharge paperwork, I went to pick up the prescription down the hall. When it was my turn, the pharmacist simply said that he was NOT going to fill it. What?!? I had just been told that everything was all set and I was good to go. Defeated, I went back to my wife, whom I had already called to tell what was happening. She was in tears, showing the brokenness that I felt on the inside. We spoke yet again to the reception desk, who had just witnessed my wife’s tears and heard our conversation. The receptionist/in-take employee simply said, “How may I help you?”. We explained the situation again, gave her the name of the doctor we had just seen, but this time was different. As soon as I used the word “opioid”, her tune changed and she wanted us to wait yet again. My wife refused to leave that location until they brought out either the doctor we had seen or the discharge employee so we could resume our visit instead of starting all over again. Like she wasn’t going to move! She was trying to hold her composure while tears were running down her cheeks and her voice was quivering, but she knew that if we went back into the waiting room we would never get anywhere. Ultimately, after a 7 hour visit, I was able to obtain my Norco prescription. 

This was a traumatizing experience! Over those two days, two trips to the ER, and multiple pharmacy visits, I felt that I was living in hell! From the moment I arrived, I felt as if I was looked at as a drug-seeking addict. This entire experience, which could have been avoided if Dr. Curole had prescribed my medication in a timely manner, especially knowing about the Norco shortages in the country at the time, was one where I felt mistreated, confused, frustrated, scared, and sad all at the same time. Why did this have to happen? Oh, that’s right, it really didn’t! It could have, and SHOULD have, been avoided. My family and I should have NEVER gone through this nightmare. 

Part 5: Let’s Try Something New

Several months before my nightmare experience at the ER, Dr. Curole had started talking about a different type of pain medication, Buprenorphine. He thought that it might be a good solution to my pain management. I agreed to meet with the pain pharmacist, Dr. Katova, to discuss this option and learn more about the medication. During the initial meeting, she immediately asked me what brought me to her and if I had taken all of my pills at once? I immediately responded with a firm, and slightly irritated, NO! She looked through my chart, and indicated the need to get below 40mg of Norco to demonstrate the success of my surgery. In that meeting, we discussed Buprenorphine, the risks, limitations, and its structural design. After that meeting, my wife and I felt that it was not the right medication for me, especially since traditional opioids had been working. 

Well, after my visit to the ER, the recognition that there was an ongoing Norco shortage in the country, in addition to Dr. Curole’s continued mentioning of Buprenorphine, I met with Dr. Katova and requested to be put on Buprenorphine, Suboxone to be precise. I thought that I might as well try the medication because I could not go through another experience like I had with my last Norco refill. So on August 4, 2023, I started Suboxone. 

Part 6: Pain Management Becomes Unsafe

Dr. Kotova, my wife and I worked on a plan that had me titrate up to 8mg of Suboxone. Everything had gone fairly well in the sense that I would not have fluctuating levels of pain coverage when it was time for the next dose, as I had experienced on traditional opioids. However, I did not get the same pain improvement that I had on Norco. I would mention this to Dr. Kotova in our weekly meetings and she would question if I was “not getting the high?” I would repeatedly inform her that I do not get “high” from opioids and have not experienced the sensation she was speaking about. I did feel a little loopy when I first started taking them close to 10 years ago but never ‘high’”. Unfortunately, she disregarded my statements and moved on to other matters. After about two months of using Suboxone, I started feeling lightheaded when I would stand up. Those feelings got progressively worse. Almost every time I stood up, I would begin to see stars as my vision was going dark, on the road to passing out. My teenage sons even had to support me standing several times because I was on the brink of passing out. Strangely enough, my ears would also start to plug up. Something was terribly wrong! This was scary! I am a congenital heart defect patient (coarctation of the aorta at 9 and aortic arch aneurysm at 39), so when I began with these symptoms on top of feeling weak and sick, and appearing ghost white upon standing, I took my blood pressure, knowing something was off. My general BP readings were about 98/52. After several days of experiencing this every time I stood up, I told my wife I felt like I was dying. Nothing in my life had changed, so what was happening. Then it hit me, the only change in my life the past few months was Suboxone. So before I called my cardiologist, I started researching to see if there was a connection between Suboxone and orthostatic hypotension, which is a sudden drop in blood pressure when standing up. Guess what, at the top of the list of SERIOUS side effects of Suboxone (Buprenorphine) was orthostatic hypotension. I reported this finding and my continued symptoms to Dr. Kotova, who informed my PCP, Dr. Curole, who consulted with my cardiologist. Being a congenital heart defect patient, I take several blood pressure medications to keep my ticker and aneurysm patch from being damaged. Dr. Curole had me cut my blood pressure medications one by one until the orthostatic hypotension went away. Well, my wife and I worked on doing this until I was down to a single blood pressure pill, and, unfortunately, the orthostatic hypotension never went away. In November 2023, my wife and I received a call from Dr. Kotova and discussed that the orthostatic hypotension was still occurring. Her attitude was one of concern and was helpful. She said to us that she didn’t feel good about the medication anymore and wanted me off Suboxone. She also indicated that she was going to have Dr. Curole write you a prescription for Oxycodone. She had explained that we would try Oxycodone since Norco was not as effective for my pain management when I had last taken it. I was glad that someone, Dr. Kotova, cared enough to recognize that Suboxone was causing a serious problem for me. One that should not be ignored.

Part 7: Communication Breakdown

Even though I was now on 60mg of Oxycodone, we continued to have the same issue with lack of response from Dr. Curole to any messages sent and last minute fills on my pain medication only. When at an appointment, I inquired with Dr. Curole about the lack of response. He simply stated that he does not answer messages because he was not paid to do that. Seriously? How am I supposed to ask questions, submit medication refills, etc.? He told us to call the front desk. Oh wait, he doesn’t respond to their messages either apparently, because NOTHING changed when we did that. When it came to my pain medication, my wife and I would have to call multiple times in the days preceding the refill due date to hope that it would get refilled in time. Every month I experienced great anxiety surrounding this lack of communication and action. How could I cope if my pain medication was not filled on time? I relied on it to function every day. I was always concerned about not only the immense amount of pain I would experience without it, but also worried that I would have to relive my ER experience. On top of that, the fact that I might have had to miss out on family events, functions, and just time with them weighed heavily on my mind and heart. It was just too much! Oftentimes it actually took my Patient Advocate to pull Dr. Curole aside to have him refill my pain medication. Why was this the only medication that I had any problems with concerning refills? 

Part 8: Honesty Opens the Floodgate to Mismanaged Pain

I had been on 60mg of Oxycodone for about nine months when I went in for a routine medical appointment with Dr. Curole. As the conversation about various health issues dwindled down, I mentioned to him that “You know, the Oxycodone works and everything, but it isn’t lasting as long as it used to, maybe 3 hours max.” I felt that in order to have proper pain management I needed to be, and should be able to be, honest with my doctor. I had been open and forthcoming about all of the symptoms and experiences on a variety of pain medications prior to this point, so this should be no different. Also, please keep in mind that I had a massive, complex surgery and they had me taking a significant amount of pain medication just to get through it, WAY more than the level that I was currently on, so my tolerance to pain medication had likely gone up and the Oxycodone 10mg every 4-6 hours, was just were not lasting like it should. Tolerance naturally occurs when you have taken an opioid medication for a long time. In many ways it protects you from overdose. For instance, I can take 60mg of Oxycodone per day where my wife may very well overdose on that amount. So, doctors who prescribe and put someone on an opioid regimen, such as a chronic pain patient like myself, know, or should know, at some point the medication will need to increase to control the pain. At this point I had been on opioids for close to ten years. Anyway, Dr. Curole looked at me and said “hmmm” as he turned to his computer. I asked him if we could try Norco again, the previous pain medication that I was on over a year prior. Norco is a weaker pain medication than Oxycodone but I didn’t really think about that at the moment, as I was just throwing out ideas. He looked back at his computer and told us that I had been on Oxycodone too long so could not transition back to Norco. About a minute later, he reversed that statement, saying that we could give the Norco a try. We left the appointment knowing that a new prescription would be available soon. To be honest, we had forgotten to ask what the exact prescription was going to be, but since Dr. Curole had indicated to us that Norco and Oxycodone was 1:1.5 ratio, we figured the new prescription would reflect that, so like 80mg of Norco. You can only imagine the shock and horror when my wife picked up the new prescription and it was 60mg of Norco per day. WHAT?!? That meant that I received a prescription that was a 25% reduction in my pain management medication. This was simply surreal.

What choice did I have but to start taking this new prescription. Within two days, I could already tell that this Norco prescription was not going to work. I informed Dr. Katova about how while the Noroc was lasting longer, its pain coverage was not adequate at all. The response I received was from another pain pharmacist, as Dr. Katova was out of the office, and was the first time that it was mentioned what Dr. Curole’s new plan was for my pain management (to address how Oxycodone was not lasting as long). And guess what that suggested plan was…Suboxone again (basically round two of Buprenorphine)! When I read the message, I thought that I was seeing things. I wondered why my doctor wanted me to try the very same medication that made me so sick? The same medication that pain pharmacist, Dr. Katova said I could no longer be on? I could not believe it. The pain pharmacist explained that the Suboxone was going to be discussed at my next appointment with Dr. Curole as a viable option for pain management, but no switch was to be made at present. I was to just stay with the 60mg of Norco. 

We had a family weekend trip planned to celebrate my wife’s birthday. The trip turned out to be miserable for me. The progression of my pain symptoms, including the intense pain in my neck, as well as feeling sick from a significant reduction of pain medication (some withdrawal symptoms) made the weekend simply terrible. While we were on our trip, out of desperation, I emailed Dr. Curole asking about the reduction in pain medication. He took me down from 80mme to 60mme, without discussing it or the possible consequences of it. How was giving me less pain medication and no other pain management techniques supposed to help my pain?!? He never answered my message, even after the weekend, which I was not surprised about. This was the doctor that told me he does not get paid to answer his messages. Calling his office never works either, so it really came down to just living in bed, enduring the pain, living through withdrawal symptoms, and hoping someone responds with some sort of help. A couple of days later, I finally received a message response, but it was not from Dr. Curole. Instead it was from Dr. Katova, who informed me that it was completely normal to drop 25% in medication when switching to a different opioid. You have got to be kidding me! How many times in the past several years post-surgery had I switched opioid types? Multiple! And how many of those times did I endure a 25% reduction in pain medication? NEVER!!! This simply broke me! I even responded back by suggesting switching to Suboxone, since I knew that was where they were going, and I had simply become resolved that something concerning my pain management was going to kill me. Either the suicidal thoughts that I was experiencing or going back on Suboxone which caused be to almost black out, fall over, and have such low blood pressure it was danger, was going to be the end of me. Like I said, her message broke me. Between Dr. Curole and Dr. Katova, I had felt lied to, manipulated, and not taken seriously regarding my pain and feelings. 

I started feeling like life was pointless. I do suffer from depression as well, and the return of pain mixed with withdrawal added to that depression. I was honestly questioning what the point of living was. Was suicide my only option? I started to feel that it was because the quality of life I had on a medication that was not working, and Oxycodone wasn’t lasting as long as it had in the past, and Suboxone (Buprenorphine) was unsafe. What options did I have? Have more surgery so that my spine is 100% fused up to my head? Should I try more Cortisone shots? Nerve Ablations? My surgeon said that those could not be done on my neck either since there is too much damage there already and more damage than good could result. So in my mind, at that moment I thought, I should not be alive. Maybe it is time to go.

The suicidal thoughts were scaring me, I have a beautiful wife and three beautiful kids who need their husband and father. I decided to send a message to Dr. Curole to let him know that I was experiencing suicidal thoughts, that the Norco was not working, and I simply could not handle it anymore. Finally a nurse, who screened Dr. Curole’s messages called me to ask me if I was actually going to commit suicide. I told her no but that I had had a lot of thoughts about it. I was just so down, so low at that moment. I cannot even explain it properly. It was a dark place. Living daily with chronic pain is a job, and part of that job is keeping your spirit up as best as you can. Dr. Curole and Dr. Katova put me through a lot for those few days and my spirit was breaking; I felt broken. The nurse booked an appointment with Dr. Curole for the next day due to the severity of my situation.

Part 9: Here We Go Again: Suboxone Round Two

During my office visit with Dr. Curole, his attitude was one of normalcy. We discussed that the Norco was not working, as it had been a significant reduction in my pain medication. Instead of inquiring about my mental state and thoughts of suicide, he proceeded to tell us that Norco was a 1:1 medication with Oxycodone (meaning that they were equivalent in the amount a person was to take of each). It was so strange because, as I had mentioned before, he had indicated previously that Norco and Oxycodone was 1:1.5 when he switched me over to Oxycodone the previous November. He was essentially claiming this time that Norco and Oxycodone were equal, so it should have effectively managed my pain. However, while there are a few studies that say Norco and Oxycodone are equal as pain medications, it is much more widely accepted that Oxycodone is 50% stronger than Norco. Essentially, he prescribed approximately 25% less medication than I had with Oxycodone, hoping it would work. He kept telling me not to focus on the numbers but to focus on how I was feeling. So, I did! I told him, I feel terrible. My pain is not managed at all; that it was much worse than when I was on Oxycodone. The Oxycodone had been pretty effectively managing my pain, but was simply not lasting as long. The end result of my visit was that I was going to go back on Suboxone despite the concern that my wife and I had from my previous experience on it and the safety risk it presented. But it was clear, my safety was being disregarded in order to ensure I would not be prescribed any additional traditional opioid medication beyond my previous prescription levels.

We started out with 2mg of Suboxone and titrated up to a total of 8mg over a period of about two and a half months. I experienced some light headedness when standing, but not nearly as bad as it had been the last time I was on the medication. However, when I was on Suboxone a year prior, it took a little while, around three months or so, to begin experiencing near blackouts and feelings like I was dying. My wife and I were meeting weekly with Dr. Katova to properly titrate the medication up, as well as communicate how I was feeling and what I was experiencing on this medication. Unfortunately, I still had A LOT of pain. Once we titrated up to 8mg, the neck pain I was having was still unbearable. In my weekly appointment with Dr. Katova in mid-October of 2024, I mentioned that I was feeling bad and my pain was uncontrolled. I also told her that I felt like I was craving more medication, and requested to try 10mg of Suboxone. At this point I was doing anything, and willing to do anything, to control the pain. If anyone out there reading this has experienced constant pain, day in and day out for years, you know exactly what I mean. Well, my use of the word “craving” was not a good word choice apparently because I felt like Dr. Kotova jumped at this opportunity to label me as a drug addict. She sat back in her chair and pondered what to do with me because I was still in pain. She then went on to suggest to me that Addiction Medicine was not necessarily a bad choice in my situation, and she wanted to know more about my cravings. Wait, what?! Addiction medication? I am not, nor have I ever been, an addict. I am a man living with chronic pain in a system that does not know how to adequately address my complex situation. Feeling confused by her statement, I answered honestly. I told her I just felt that I needed more medication; that 8mg was not providing for adequate pain control and did not feel good because of it. In fact, I had been feeling terrible; limited in my day to day function because of the pain I was experiencing. She pushed me by questioning what I meant by craving over and over. After I told her how I was feeling and what I was experiencing, her tone changed!  She stopped listening to me and said I appeared edgy and she needed to speak with Dr. Curole. It felt like she was treating me like a drug addict. The look on her face and her demeanor changed, and she came across as if she was talking to a person who was completely out of their mind. My wife was in the video visit as well, and just sat quietly stunned, looking shocked at this exchange that had just taken place. First, I want to point out that I was asking for more Suboxone, a medication that does not have ANY reward factor. Suboxone is the same medication they use to treat opioid addicts. While there is some very limited information about using it for pain control, it is not known as a great pain medication. I thought about it and wondered why a doctor would treat me like a drug addict on Suboxone (Buprenorphine)? Like I said, it is the very same medication they use to treat addicts. And why was it a huge deal that I felt like I needed more medication? The medication at my current level was not working. Again, I was being honest about my pain, my feelings, and my experiences, as well as being compliant with this second round of a medication that had previously had serious side effects. I was simply asking to see if more may help because I was in so much pain. To me, there was only one answer for why this was happening. Pain Pharmacist Dr. Mariya Kotova was trying to push me to another department so she would no longer have to deal with me. It felt as if she truly did not care if I was a chronic pain patient, in pain, and ultimately labeled as a drug addict, losing all access to pain medications. I believe she wanted me out of her hair. I was in pain, Suboxone was not working, she had no other treatment plan or option, so she had to get rid of me. It was that simple, and knowing she had the power to label me a drug addict was scary. I felt powerless and my anxiety was through the roof. I was afraid that my pain would never be addressed again, minus some Tylenol, which did not work, despite trying. 

Part 10: Maybe Something Can Be Done to Help the Pain

Due to the fact that obviously my doctors were failing me concerning my pain management, I decided to book an appointment with my surgeon and with a surgeon at University of California, San Francisco in order to find out if there was absolutely anything that could be done to my fused spine or other portions of my back to address the chronic, daily pain I was living in. My wife and I spent the day in San Francisco talking to one of UCSF’s Spine Clinic’s top surgeons. UCSF has one of the top spine centers in the country. Despite how great and innovative they are as a clinic, we received the disappointing news that the only way to stop my pain would be to fuse the remaining unfused section of my cervical spine. The doctor told me that he would not recommend or do the surgery right now as it would significantly limit my mobility further. He said that one day, when the pain is so bad that we can’t control it anymore, and I am older, we will do the surgery. While he did indicate that my spine surgery looked good and was technically exactly what he would want to see out of a complex surgery like I had. I was very disappointed and saddened to hear that my future was likely to consist of having my spine completely fused and immobilized. I decided to see my surgeon, Dr. Javidan, at UC Davis, as well, to discuss, yet again, my cervical spine pain and get his opinion on the matter. While the opinion was very similar to the surgeon at UCSF, the demeanor was different. He alluded to the fact that if I kept talking about how much pain I was in, I was going to end up with my neck fused as well. I chose not to react to this statement, I simply just nodded my head and agreed with what he said. On the inside I was freaking out. I was scared, as I now had two surgeons telling me that my only potential option is to fuse the rest of my spine, it won’t guarantee pain relief, and they will not do the surgery on me until I am older and the pain is so unbearable that I’m basically screaming in pain all day. After those two appointments, I realized I was left with needing some way to manage my pain, and, unfortunately, my PCP and pain pharmacist were following, what appears to be, UC Davis’ policy concerning limitations on opioids for chronic pain patients over their oath to cause no harm to their patients.

Part 11: Deja vu? 

Several weeks after my frightening visit with Dr. Katova, I had a follow-up appointment with Dr. Curole and Dr. Katova. Dr. Curole actually spoke out in my favor by directly telling Dr. Kotova in the appointment that I was not a drug addict, had not once run out of pills early, and reminded her that I have a complex pain problem that they were going to try to fix. He also stated that he wanted to raise the Suboxone to 9mg, which was close to what I requested. It meant that Dr. Curole was at least on board with trying what I asked, trying to address my pain, instead of calling me a drug addict. What a relief! At least I was not going to be negatively and incorrectly labeled and written off for life. In the same meeting, Dr. Kotova apologized for suggesting that I was an addict, which I appreciated. However, at this point, to be honest, I had this anxious and sad feeling about every word that was coming out of my mouth in regards to my pain and pain management. My head was swirling with thoughts like “If I say the wrong word am I going to be labeled a drug addict?” “If they take what I say incorrectly, does that leave me with no future pain control?”  It’s an awful feeling to live with on top of the actual pain that I was experiencing. Knowing that these doctors actually have the power to make these decisions to consider my worthiness of pain medication is completely scary and wrong. 

In that same appointment, I went ahead and shared with both doctors the details of my appointments with the spine surgeons. I explained that both surgeons wanted to wait to do surgery because that surgery would mean losing the remainder of the mobility in both my spine and hips due to the metal anchors already attaching my spine to my sacrum. We were all sitting and Dr. Curole started to say “Maybe they could do it soo”, I knew he was about to say “sooner”, until I abruptly interrupted him. I said in a firm tone that I am not going to have this surgery any sooner than ABSOLUTELY necessary, as it would cripple me further, like for the rest of my life, permanently. And why should I endure that now, at my age, when there is medication already available to treat my pain. Both doctors were just silent and Dr. Curole went on to want to try the 9mg of Suboxone. I informed both doctors that the light headed episodes from the Suboxone were starting to get worse. I let them know that they were not as bad as before but were getting significantly worse and more concerning. 

Over the next month, the periods of near blackout came back in full force. On top of the daily pain I was experiencing, I now was experiencing periods of dizziness, dwindling vision, and loss of hearing almost every time I stood up. I had to consciously get up slowly, bending my knees, hoping that I did not completely pass out. I was feeling sicker and sicker, most likely from my blood pressure being too low. I felt like I was reliving my experience from over a year ago. It was seriously like deja vu!

Part 12: An Injury as the Last Straw

On a regular November day, I had woken up and, while not feeling my best self, wanted to attempt something that gave me a small sense of normalcy. I have SLOWLY been working on restoring a 1957 VW Beetle with my teenage sons (it takes me a long time to do anything on it, so I am extremely lucky to have my boys by my side). They take charge of the parts that I am unable to do or are too challenging due to pain and mobility. However, I refuse to let this project go, because I will not give up on striving to live as normal of a life as possible. Well that day I decided to go into the garage to do some work with a small electric sander. Now, I had been experiencing regular occurrences of near blackouts when standing, but I even planned for that…I was going to do this task sitting down. I knew that I would have to get up slowly, bend my knees and take deep breaths, but I could do this! I was having a pretty good time, sanding away with my Dremel at 8000rpm’s for a good 15 minutes. I was in a zone! Needing to progress in my work, I decided I needed to grab a tool off of my peg board, so I stood up and stepped forward a couple of feet and started looking around for the tool that I needed. It took a few seconds or so to look for the tool, and then it hit me! I suddenly felt the oncoming of the usual light headedness that I experienced when standing, but oh boy, this was one of the bad ones. Things started going dark, my ears felt muffled, and I still had the sander in my left hand. I had put it there so that I could reach for the tool. However ,the sander was still ON! I was trying to think as fast as I could before blacking out entirely. I thought, if I fell backwards I would crack my head open. But, wait, I still needed to turn the sander off so that I don’t kill myself with a small but powerful rotary tool. I tried reaching for the off switch with my right hand but the Dremel hit my arm instead. In those moments, I could feel my heart beating so slowly, like it was trying to pump blood but could not. It was such an odd feeling, a feeling that you would experience as you were dying, but consciously being aware of your fading into the great beyond. Your heart pumping hard but slow, losing hearing, and vision fading to complete black darkness. It was frightening, but I knew this medicine, Suboxone, was causing this event. I had just hoped this would not result in my death. I mean, nobody was in the garage with me, so I was on my own. It was impossible to really think clearly in these moments, although as I thought about falling forward I bent my knees thinking I may just collapse and be ok. Well, slowly I could feel something changing. My  vision started slowly changing from dark to just little stars, and my heart was returning to its normal beating rhythm. I could feel life flowing back into me. Blood was trying desperately to get to my brain and provide it some much needed oxygen. I was able to finally regain my composure, turn my sander off, stand there for a couple of minutes, and just breathe. Then I felt some pain in my arm. I looked down at my right arm, and became consciously aware that I had sanded myself pretty good in several areas. There was some blood but it mostly looked like severe cases of road rash in several areas of my arm. I went into the house and called for my wife. I told her that I thought I had blacked out for a few seconds, and showed her my arm. She was at a loss for words as she helped clean me up, concerned about how I was doing and feeling. She simply could not believe that the doctors were keeping me on a medication that was a huge risk to my safety and well-being.

I continued to have these episodes of short lived blackouts, in addition to constantly feeling dizzy, and loss of vision and hearing each time I stood. It got to a point where my teenage sons would regularly have to hold me up to support me and prevent me from falling when I first stood, or my wife would come home early from work just to make sure I was okay and had not fallen and significantly been hurt. The saddest part of this time was when my youngest, my daughter, too small to hold or support me, would stare at me with fright in her eyes, asking if I was okay, as I tried to balance myself when I stood. All of this made me feel so defeated and as if I did not matter, since my doctors were not listening to me and the concerns my wife and I had about this medication. Why was I being kept on Suboxone when it was clearly posing a risk to my overall person and well-being?

Part 13: Let’s Get Off Buprenorphine, Or Not

A couple of weeks after my incident with the sander, I had an appointment with Dr. Curole and Dr. Katova. The majority of the hour plus visit was focusing on my pain, pain management, and what options there were because of the orthostatic hypotension I was continuing to experience. I am always grateful that my wife comes with me to every one of my appointments, but during that visit, I was especially glad she was there. For some reason, probably my desire to maintain my male pride, I made no mention of the wounds on my arm from the sander incident. I think that I was at a point where I figured that I had been discussing my problems at length with the Suboxone enough. But as Dr. Curole started minimizing the black outs, my wife reached over, grabbed my arm and said to Dr. Curole that I had hurt my arm while sanding something in the garage because I had blacked out. She looked at me and told me to show him so I pulled my arm out for Dr. Curole to see. Dr. Curole looked at my arm sympathetically, but ultimately stated that I was lucky and it could have been much worse. My wife and I just looked at him, nodding our heads, ready to hear an alternative solution to my pain medication, as Suboxone was simply unsafe at this point. The thoughts swirling in my head were focused on what else would have to happen to me while on Suboxone to get their attention that this medication was unsafe to me in particular. Would I actually have to die before anyone took me seriously? Dr. Katova acknowledged that there needed to be a change because this was the second time that Suboxone had not worked due to safety concerns with my experiences of orthostatic hypotension. The end result was that I would start a new pain medication regimen, 30mg of Norco and a 20mcg/hr weekly Butrans patch. Butrans is a medication that basically slowly adds buprenorphine to your system. It’s a very tiny amount, so Dr. Curole’s idea was that the very small amount of buprenorphine would remain in my system once the Norco wore off and kick in to give pain relief. I thought, well I need to be compliant and I have no choice. So I said I was willing to give it a try. At this point, I was feeling just confused as to why he was pushing a buprenorphine product SO hard. I mean, this medication was making me sick, causing injury, but yet my own doctor kept wanting to give it to me! Why? While we left the office understanding that this new medication regimen would start once my insurance approved it, Dr. Curole also indicated that we would adjust the Norco as needed. Within a few days, we had adjusted my medication to 60mg of Norco, as 30mg was leaving me in intense pain. About two weeks later, I reached out to Dr. Curole asking to be switched to Oxycodone instead of the Norco, because the Norco was not providing for ample pain relief, even in combination with the Butrans patch. Dr. Curole did make the switch, which was definitely a help in my pain management. On a separate note, in the beginning of my time on Butrans, the dizziness that I had been experiencing was better, but not gone. Unfortunately, just like with Suboxone, the symptoms from orthostatic hypotension returned. On my next visit to see Dr. Curole and Dr. Katova, it was suggested that I could try and reduce the Butrans to 15mcg by putting TAPE over part of the patch. He showed me how I could potentially do this to get “about 15mcg”. He also said that I could try going down to 10mcg by covering half of the patch if I wanted to, or completely get rid of it. I thought to myself, this is insane. Here I have shared all of my problems and concerns with Buprenorphine, and both Dr. Curole and Dr. Katova wanted to put the medication management in my own hands based on how I was feeling? I made the suggestion that maybe we could try a slight increase in my traditional opioid prescription, but that was met with an immediate rejection. The possibility of covering the Butrans patch was their solution to both my pain management and side effects of the medication. I couldn’t believe this was happening. I felt so depressed inside. I actually felt abused, like I was being bullied. The nature of the conversations felt manipulative, like they were trying to make me believe that Buprenorphine was safer than any other pain management option despite everything that had happened to me on it. It just felt wrong and deceitful. It seemed like they were working very hard together to keep me on Buprenorphine. The appointment ultimately left with me remaining on 20mcg of Butrans. The entire conversation was a lot to digest, and because several things were suggested to me, and I wanted to follow what was being said by my doctor to ensure I was compliant in accordance with the opioid agreement I sign yearly with UC Davis, I read over Dr. Curole’s post-visit summary notes to make sure I was doing the correct thing with my pain medication. Here is what he wrote:

Pain controlled with Burprenorphine and Oxycodone. Patient reports that Buprenorphine helps extend the effect of Oxycodone. However, concern for Buprenorphine contributing to orthostatic hypotension.

 -Continue current regimen of Buprenorphine 20mcg patch and Oxycodone 10mg every 4 hours.

 -Consider reducing Buprenorphine to 15mcg if dizziness persists, and further to 10mcg if necessary.

After reading these post-visit notes, from February 20, 2025 until May 6, 2025 (when other events occurred…read on for the details on that one), I kept with the prescribed pain medication regimen, following both these directions, as well as what was on my prescription bottles’ labels.

Part 14: Refill Policy Leads to Lack of Pain Management

Since November 2022, when Dr. Curole took over my pain medication, he had my traditional opioid prescription filled on a 28 day cycle so that I could have access to twelve extra pills each month for breakthrough pain. He acknowledged the seriousness of my spine surgery, the recovery, as well as the ongoing pain treatment that I was in and would continue to endure. I would use this extra medication for times when the pain was unbearable or if I wanted to be able to do an activity for a longer period of time. In the early stages of my recovery, it was often used for days where I would have physical therapy, or if I wanted to sit in my chair and spend some time with my family watching a movie. As my recovery progressed, I would use the extra medication to attend day-long robotics tournaments for one of my sons, which required a lot of looking down at robots battling each other for the win, or tending to a garden, planting and watering (something I really enjoyed doing prior to my surgery), among other things. The extra medication had been very helpful in trying to achieve as much of a normal life as possible. This procedure had never been questioned by other doctors (ER and within Dr. Curole’s practice), pharmacists at three different locations, including the CVS I regularly had all of my medications filled. Well in February 2025, all of that changed! Dr. Curole had put in for my medication to be picked up on February 13, 2025. After my wife had put in a call to our CVS about the status of my Oxycodone prescription, we received a call from the pharmacist expressing that early refills would not be allowed. He indicated that according to CVS’s current policy, any type of opioid would only be filled on a 30 day cycle. We discussed that the 28 day cycle had been the standard for my opioid pain medication for over two years, always prescribed and sent in by my doctor to ensure I had breakthrough pain medication. The pharmacist indicated that they would do a 28 day fill this one last time, so that it would give us ample time to speak to my doctor, and that he, the pharmacist, would have time to communicate this policy with Dr. Curole. 

At my February 20, 2025 appointment with Dr. Curole and Dr. Katova, no changes to my pain medications were made, but we did discuss the issue with the 28 day cycle for Oxycodone no longer being allowed by my CVS pharmacy. At that time, Dr. Curole said he would look into this situation and reach out to my CVS pharmacist to confirm that the early refills at day 28 would be allowed. Dr. Curole also mentioned that he would look into possibly writing the prescription for 28 days instead of 30, as he stated a colleague of his did that for one of their patients. Well, the time came for me to put in my Oxycodone refill request (I always put it in a week prior to when it was due to ensure plenty of time for Dr. Curole to send it over to the pharmacy). He did send the medication over in time for the 28 day cycle refill. However, on the day that he sent it over, which was the day that it was to be due on that 28 day cycle, my wife got a text notification from CVS that it was too early to refill the Oxycodone. She immediately called the pharmacy. When the pharmacist called her back, he said that the earliest that he could fill it would be in two days, per CVS’s policy, and that he had already told us and my doctor that. There would be NO 28 day cycle. When my wife asked if the prescription were to be changed to a 28 day cycle, like re-written to say 28 days instead of 30, would that be okay. The simple, direct, firm answer was no! So here I was left with NO Oxycodone at the end of the day, as I had been expecting to pick up my prescription and have it ready for my late night dose. It was clear that Dr. Curole HAD NOT figured out a solution to the situation that my wife and I were concerned about, and warned him of. It felt as if my care, my well-being, my overall person, had been disregarded, as if I simply did not matter. He failed to do what he had promised us to do; what he had even put in his post-visit notes. We immediately called Dr. Curole’s office, explaining the situation. A short while later Dr. Curole called us back. We told him what had happened with CVS, and he said he would reach out to the UC Davis pharmacy and explain my situation to see what could be done. What could be done was that I was able to receive the Oxycodone prescription a day early from the UC Davis pharmacy. Dr. Curole called us that evening to tell us the news, and that it would be for a 30 day cycle as anything less than that would not be filled. He also indicated that he would not go above the current pill amount of 180. If he would have gone above that number, I would have been able to keep my breakthrough pain medication. To be honest, at that moment, my brain was not even processing that fact. I was terrified of the next morning when I had to go without any Oxycodone until the pharmacy opened and they had my prescription ready. I knew that I would be facing a horrible number of hours literally going through immense, excruciating pain and withdrawal symptoms from opioids that I had been on for close to a decade. This should NEVER have happened! To say the next morning was rough is an understatement. I was in so much pain and starting to feel the effects of withdrawing from opioids, that there was no way I could get down to the pharmacy myself to get my medication. My wife actually had to take the day off of work to go to the pharmacy, wait for the prescription to be filled, and then drive home to give me my delayed dose. I hate to say it again, but this was yet another nightmare that I had experienced with Dr. Curole and my pain medication. A true, painful nightmare!

Part 15: Enough is Enough! I Cannot Take it Anymore!

Staying on a medication that continued to make me feel dizzy and lightheaded almost every time I stood up, coupled with the loss of my breakthrough pain medication due to a change in the refill cycle and Dr. Curole’s refusal to prescribe me those extra pills as part of my regular prescription, was just too much for me to handle. I had been stripped away of a breakthrough medication supply that had given me the ability to function on a more normal basis with regards to activities, family events, and just living a more regular life. This breakthrough medication that had been part of my regular opioid pain medication regimen for over two and a half years at this point. I simply decided I could not live like this anymore. I could not sit back and let a set of doctors, as well as a medical system, disregard me, my pain, and my life. I had to take a stand. Some may say I was ready to make waves, but I simply wanted to have my pain addressed properly. I needed to take a stand for myself, as well as all of the chronic pain patients out there who are being punished for their medical problems. 

I decided to craft a letter and send it to UC Davis to let them know about the ongoing problems I have had with Dr. Curole and Dr. Katova. I figured that since this was a top-rated medical system, UC Davis would not want me to suffer; that they would want me, their patient, to be taken care of, and not mistreated, as I had been. 

Here is the letter that I sent to the UC Davis Patient Relations Department, the Department of Family and Community Medicine, as well as some other individual Medical Directors, if you are interested in reading it.

A couple of days later, I received confirmation letter from Ms. Sanha Shah in UC Davis’ Patient Relations Department, indicating that not only an investigation would be conducted, but that my case would also be forwarded to the Harassment & Discrimination Assistance and Prevention Program (HDAPP) for a separate review due to my disability status. I read this letter several times to let it sink in. Could this finally be the answer to all of my concerns? Surely an investigation into EVERYTHING that I had documented, my files, the email/message exchanges, etc. would result in them finding the care I had been provided by Dr. Curole and Dr. Katova as inadequate, harmful, and potentially dangerous. This confirmation felt like a breath of fresh air and gave me hope that moving forward I had a chance for better, safer pain management, and a more normal life. 

Here is that response for your reading enjoyment.

Within a few weeks, the HDAPP responded with a disappointing, generic letter, stating that they found that Dr. Curole and Dr. Katova had done nothing that would constitute discrimination. To be honest, this was surprising due to the research I had done within UC Davis’ own disability discrimination guidelines. 

Here is their response, as well as my written reaction that I sent their way.

I did respond, I didn’t expect an email from HDAPP or about HDAPP issues, so I wanted to be clear on what I meant as discriminitory. You can read my response here:

The reply to this was not significant. I don’t feel like Taylor really cared much.

During this period of letter exchanges with these two departments, I received a call from the director at Dr. Curole’s office, Tu, who explained that she had heard about the problems I was having with Dr. Curole and wanted to present me with the option of transferring my care to Dr. Molly Davis in Rancho Cordova. She explained that Dr. Davis was the Clinical Medical Director at that clinic. Before accepting this transfer, my wife specifically asked if Dr. Davis worked with chronic pain patients and those on an opioid pain regimen. Her answer was a firm and absolute “YES”. Recognizing that this could be the very thing that I had needed for better care for my pain, we agreed that the switch was necessary and needed. I booked my first appointment with Dr. Davis for May 6, 2025.

Part 16: It Really Got Worse?

Prior to my appointment with Dr. Davis, I was feeling fairly positive. I really thought that the UC Davis Health System was going to come through for me and my overall health. I felt that I had been heard; my letter had been taken seriously. I thought at bare minimum, I would be given back my breakthrough pain medication and come off of the Butrans. Those thoughts did not feel unreasonable considering the Butrans was repeatedly causing me to nearly pass out, and it  made sense to return my breakthrough pain medication so that I could live a more normal life. 

Those thoughts, hopes really, were dashed within the first few minutes of my appointment with Dr. Davis. The tension between us started almost immediately when we began discussing my pain medication regimen. We went over what my medication routine was, and I indicated that I understood that doctors faced pressure from the DEA when it came to traditional opioids. She simply snapped back that that was not why they restricted the dosage, that, instead, they did so because it was unsafe. I completely understand a concern for my safety and well-being, but that was not the case in this situation. I had clearly developed a tolerance to traditional opioids over the years (like almost ten years), but was not looking to just have my dosage increased for no reason. I was looking to have breakthrough medication that I had been receiving for over two and a half years restored, as well as to be on a medication that had proven success with pain control, rather than one that caused me to pass out, feel sick, and was potentially dangerous to my greater well-being. When she talked about safety, I pointed out that the Butrans was not safe for me, but yet I had been put and kept on some form of Buprenorphine for an extended period of time, multiple times. She asked me what my Butrans dose currently was. I told her I was on the 20mcg once a week patch. Dr. Davis immediately stated that I had been told by Dr. Curole to reduce my Butrans amount to 15mcg or 10mcg by taping the patch. She said that she saw it in the notes, and that by following the prescription on the box rather than what the doctor said could actually be considered as a violation of my opioid agreement with UC Davis. Wait a minute! There was NOTHING in my records that ever indicated that a change in the dosage of Butrans was to be made. There was no prescription change, no conversations, messages, post-visit notes from Dr. Curole indicating anything other than continuing on the 20mcg patch. The conversation Dr. Davis, my wife, and I was having was feeling insane, like I was living in a surreal dream. The most disturbing part of that conversation was to find out that she had gotten information about my pain medication regimen not only from my records, but from having a conversation with Dr. Katova. Yep, that’s right. My new PCP had a lengthy conversation about me from one of the doctors I had filed a complaint against; a pain pharmacist who had repeatedly chosen to disregard my safety and supported keeping me on medication that had resulted in injury and regular mini-blackouts. This fact just reinforced the tone of my appointment with Dr. Davis. She had come into the appointment with preconceived notions about me AND my pain medication.

The appointment ultimately resulted in several things. First, I would NOT be getting any breakthrough pain medication. Two, I was to stay on Butrans, but was given the choice of 15mcg with side effects but better pain control, or 10mcg with less potential side effects but less, if any, noticeable pain control. I ultimately chose 15mcg due to pain control that needed to be addressed. Third, I was to increase my Gabapentin dosage to address pain. Gabapentin had provided some relief to me in regards to muscular-skeletal pain, but not the severe, chronic pain I experienced everyday. It had been documented in my records that the Gabapentin did work for specific pain, particularly at night, but did not reduce my overall pain in any consistent manner. I had also tried this medication at higher doses before and it resulted in immense swelling and loss of my body hair. But for the sake of being compliant, I went along with it. Fourth, I was to be referred to Psychiatry because I demonstrated “anxiety” during the appointment with Dr. Davis. She wanted to have me evaluated because mood can be affected by opioid usage. She indicated that an Opioid Use Disorder specialist might be able to help me best in this case, but assured me that I was NOT being referred due to Opioid Use Disorder. This action did not take into account that I had been diagnosed with, and on medication for, General Anxiety Disorder and Major Depressive Disorder YEARS before ever taking any opioid medication for my back pain. I also have consistently seen a private psychologist to deal with the issues surrounding my chronic pain. This referral felt like I was being suspected of being a drug addict, not that my actual mental health was being looked out for. Fifth, I was to be referred to Pain Management (which I had been in the past, as I was working with Dr. Katova from that department) to see what they could do for my pain management. Again, I agreed, so that I was in compliance with my Opioid Pain Agreement with UC Davis, but this step failed to recognize that I have tried EVERYTHING that has been suggested to address my pain, except for fusing the remainder of my spine, which two surgeons have indicated would not be something they would recommend at this stage and age of my life. I looked at my wife, who was fighting back tears, as this was not the type of meeting, resolution to my complaints, that we had hoped for. She looked helpless and defeated, as she sat there and took everything in that Dr. Davis was saying and recommending as a treatment plan. She felt she had let me down. My wife’s countenance, on top of the entire appointment, left me feeling completely disheartened. I had any optimistic hope of my pain management dashed through this appointment that left me with another reduction in pain medication, and what felt like a systemic desire to label me as a drug addict. 

Part 17: Continued Reduction with No Replacement

A few days after my appointment with Dr. Davis, and after several message exchanges, she ultimately decided to rewrite my Butrans prescription to a weekly patch of 10mcg. This newest change in my prescription meant that my Butrans went from 20mcg to 15mcg to 10mcg, a 50% reduction, in about a week’s time with no viable alternative medication provided for my pain control. I was not opposed to reducing or ultimately eliminating Butrans, as it was one of my hopes out of my appointment with Dr. Davis, since it is a medication that has serious side effects for me. However, the fact that Dr. Davis significantly reduced my pain medication (between the Butrans reduction and failure to reinstate my breakthrough pain medication) left me in a position of less pain control than when I had been under the care of Dr. Curole. While I was provided with alternative pain treatment options, such as increased Gabapentin, referrals to Pain Management and Psychiatry, those were not addressing a reduction in opioid medication. All three of these items are either redundant or have been documented to not adequately address my pain. It still seems so bizarre to me that over the course of a couple of months I would have the only successful, proven method of pain management, traditional opioids, reduced. Why, when a medication is available, would I only be given options that have not proven to be successful in my chronic pain management? 

I have been completely honest and transparent that my body has a dependency on opioids, so when a measurable amount was taken away, I began to experience symptoms of withdrawal, which is completely normal for someone who has been on opioids as long as I have. Initially I said nothing about these symptoms to Dr. Davis because I thought that it would pass. However, the symptoms of withdrawal coupled with the increased level of pain I was experiencing on a daily basis led me to reach out to the doctor who was covering for Dr. Davis while she was out. Yes, you read that correctly, Dr Davis was and would be out of the office for approximately six weeks. So after setting me up on a pain regimen that reduced my medication, had me waiting weeks to access the referral resources, Dr. Davis left me in the hands of Dr. Susana Torres. Dr. Davis told me, and noted in her post-visit notes, that I could reach out to Dr. Torres with any questions or concerns during her absence, and all I needed to do was to put Dr. Torres’ name in the subject line. With feeling the effects of decreased pain medication in terms of mild withdrawal and increased pain, as well as the ineffectiveness of the increase in Gabapentin, I did send a message to Dr. Torres about my concerns. I indicated, very honestly, what I was feeling, that my Butrans had been tapered too quickly (I mean the CDC recommends a taper of no more than 10% a month and mine had been tapered 50% in about a week) and wanted to have my case reevaluated. After several days, the Clinic Manager, Melissa Soderman, responded that since my doctor was out, coverage of the messaging system was not available, meaning no one would be reading or responding to my messages, despite following the protocol set forth by Dr. Davis before she went on leave. I continued to be unheard and mistreated under yet another UC Davis physician, and now another UC Davis clinic. The systemic issue of mistreating chronic pain patients is one that needs to be addressed in order to properly treat every patient in a health care system. 

Part 18: You ARE a Suspected Addict

I received the referral for Pain Management and Psychiatry, and made appointments for the summer, as they were booked out. Upon reviewing the referral for Pain Management, I saw a note that rocked me to my core. Dr. Davis actually put in the referral that Opioid Use Disorder (OUD) was suspected. The notes about possible OUD was a huge ethical violation! First, Dr. Davis is NOT a clinical psychologist with the skill set to make this diagnosis. She provided no diagnostic criteria, mentioned nothing about my behaviors, attitudes, etc. that would suggest that I could possibly be suffering from OUD. Second, Dr. Davis never discussed Opioid Use Disorder with me in person or through messaging. My own doctor was going behind my back to try and get me labeled as a drug addict. I was now being sent to a department in the UC Davis Health System that was supposed to look at helping me manage my pain, but would already be tainted by Dr. Davis’ words that it was suspected that I had Opioid Use Disorder. Words matter, and in her case, her words were an attempt to create a prejudice against me and the access to proper pain management. While it pained me to do so, I had to file a complaint with UC Davis’ Patient Relations against Dr. Davis and her ethical violation of my right to receive care free from misrepresentation or unsubstantiated labeling in my record. Again, I had to take a stand for my health and rights. 

Here is that complaint letter for your reading. (Insert PDF)

Part 19: I Have to Matter!

I am a chronic pain patient, not an addict or drug seeker. I have a very serious, documented, life-long spine condition that, while addressed through major surgery, caused even further pain. I deserve to have access to any and all medications available to help my pain, as long as they do not pose a threat to my life. I am a human, who deserves to be treated with human decency! 

It amazes me as I reflect on this, my story, to see in text how the past two and a half years of my life has been dominated by a “new” body, pain, monthly anxiety surrounding pain medication refills, pain medication “yo-yo”ing, and a set of doctors who have been there to aid in this disastrous care instead of actually care for me. 

My story does not end here, as there has been no resolve, and I still am existing in a system that has not “figured out” how to treat my chronic pain properly or fairly. I will continue to update my journey as new events and developments, but hopefully no atrocities, arise. 

Our nation’s medical system is broken. I do not know exactly where, but it is broken. Something needs to be changed so that people like me are not mistreated, pushed to the side, or ignored. I, and others like me, are worth paying attention to. I could no longer live in silence about my experiences with the UC Davis Health System, which is why I chose to share my story with others. I honestly hope that you have found some value in my words, or at least an understanding and compassion to systemic challenges and disregards that myself and other chronic pain patients live with on a daily basis. If you have experienced something similar to my story, I invite you to….

The opioid crisis is real, but it is not the crisis that hits the media headlines or what doctors tell their patients. The real opioid crisis is the mistreatment of chronic pain, opioid-using patients! And the crisis HAS TO END!

Part 20: The Story Continues…

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