Three-page Letter to Doctors (a.k.a., I Have Had It, Officially)

I am writing because I have some concerns regarding my treatment, and—as an autistic person—I feel most comfortable expressing myself in writing. As such, I may not have provided the most appropriate descriptions of my current situation at past appointments. Following the rhizotomy, I experienced severe pain at the site for approximately 3 weeks. Since that time, I have had no pain in that area whatsoever until 2-3 days ago, though it is intermittent and slightly different, which leads me to believe it may be associated with aggravation of problems in other areas. As I mentioned previously, the most severe pain occurs directly to the left and right of the vertebrae in my lower back, as well as right over the spine in the same area. This deep pain is accompanied by muscular pain most of the time, which ranges from tightness to a feeling of cramping. I also experience pain very far to the right and left (more intense towards the right), at or above the crest of my hip. This pain also causes the muscles in the area and in my side to spasm. Over the past year, the pain has seemed to worsen in these places, such that any bending, twisting, or sitting (or staying in any position for too long) causes dramatic spikes in pain. However, I am in pain all the time. The pain seems to be accompanied by a feeling of pressure. I feel physically weighed down in this region, and I feel like I cannot stretch to full extension. Chiropractic adjustments seem to help tremendously with relieving that feeling and the pain that radiates to the outer regions of my lower back. These also help with the pain around the center, though the effects do not last long at all (8-36 hours), and attempting to bend, twist, or move too drastically (which isn’t very much these days), will cause the symptoms to return.

At my first appointment with Dr. Gerszten, I was told that the rhizotomy would be the first in a series of steps aimed at identifying the source of the pain, in the event that the treatment did not result in complete resolution of symptoms. When I was told that I was again being referring to another facility, this came as a shock. I’m unsure of what this means. Will this treatment occur in conjunction with these other steps, or am I being passed along again? I do not mean to sound harsh in this case, but it’s a very frustrating experience. I don’t think I have been able to express just how, but please allow me to try.

The only things that have been able to improve my level of functioning in life—alleviate symptoms of anxiety, depression, overstimulation/sensory overload, intrusive thoughts, and many others—have involved physical activity. Previously, I was preparing to compete at the national level in bodybuilding. I have won several competitions based on my ability to dance. I have played sports for my entire life and built a career as a fitness professional while striving to achieve my long-term career goals. Over the last 2.5 years, I have watched my entire life fall apart. I spend most of my time lying in bed, unable to deal with the thoughts or find any way to stop them. (Medication is not an option. I have tried roughly 2 dozen in my life, almost all of which have resulted in severe side effects. The others blunted my ability to feel and caused depersonalization to varying degrees.) I cannot complete even the simplest task due to a severe regression of executive functioning skills, which is why I have spent hours every day since the phone call regarding the next step trying to write this message. Every task, even getting up to go to the bathroom, has become this arduous. I cannot do very many things myself. Until several months ago, I was able to go to the gym, albeit doing very basic workouts in comparison and requiring assistance to be able to move throughout the facility and lift things to the appropriate position. However, the pain in the central region of my spine has worsened such that this is barely possible, though I continue to try to do as much as I can, within reason. In addition to greatly improving my mental health, these activities have given purpose to my life. I have had none of that over the past 2 years. My entire life has been consumed with pain, just making it through the day. (I’ve also attempted various forms of therapy with no success, and I’m very familiar with the psychological aspects of pain.) Even at my best over these past 2 years, this level of functioning has been unacceptable because I am still incredibly trapped and dependent on others. I want to begin living my life again, and I’m worried about this next option.
I do not want to attempt conservative treatment—lie in bed for 90% of the day—until others decide that I am old enough for surgery. Do the years until then not matter? Or the years I have spent barely leaving my house, losing my home several times, losing contact with friends because I physically cannot do anything with them, losing opportunities to advance my career or return to school? Even at its best, again, it has been unbearable. But I’m not the type of person to show pain on my face. I blame that on how I was raised and a general insensitivity to pain until it becomes life-threatening. (Example: I broke my hand in several places in 5th grade, but I kept skiing for three more hours before I told my teacher.) But I cannot handle living like this, mentally or physically. Even now, I don’t feel like I have adequately expressed the level of distress this causes.

Some options aimed at identifying the source have been presented to me in the past: facet joint injections or rhizotomy (bilateral), another spinal injection, discogram, etc. I’m absolutely willing to undergo all of these, but I need to know the plan, its likelihood of success based on published evidence and clinical experience, and what happens in the event that the plan fails. I’ve also considered asking about Celebrex, as I know that the risk of stomach issues like I had experienced with other NSAIDs is lower. I have had several injections, undergone physical therapy three times, tried multiple NSAIDs, tried two anticonvulsants that both resulted in a reaction referred to as DRESS syndrome, have been through psychological counseling/treatment in various forms, and I just don’t know what else to try at this point. What else could give me my life back. And that is important to me: MY life. And that’s not a life of sitting around, watching movies, and the like.

I do have some additional information about symptoms that might be interesting. When I have been able to make it to the gym, I squat using a weight belt, which I began doing 6 months ago. After squatting while wearing the belt, I’ve experienced a complete reduction in pain upon taking it off, which lasts 20-40 minutes. I do feel some level of pain if I attempt to move suddenly during these times, but I found this to be quite curious. The problem I have is that, even in pain, I can still do a 2-minute plank (down from 4 min since injury), and my abdominal muscles always outlast my back. I have attempted to do back exercises to strengthen these muscles as well, but the issue is not about form or weight. If not in pain, I feel confident that I could do everything I could before. However, I have been experiencing another symptom that I did not believe was related. I’ve been having pain in my very low abdominal area that extends to the groin on the right side, which seems to worsen with strenuous activity or sitting completely upright. This has been going on for 8 months, though I originally assumed it was related to the general abdominal swelling/discomfort I have had for about the same amount of time. I have been unable to make my appointments for an ultrasound, so I still do not know about this. It’s been difficult to leave the house, though I intend to reschedule soon.
I apologize for the length of this message, but I do not feel that I have adequately explained how desperate I am, how incapacitating this is, and how much work it takes (physically and mentally) just to make it into these appointments or leave my house in general. Again, this is not acceptable to me, and I can’t continue living this way. If the best conservative treatment can offer me is being able to shower and walk down the street—and not allow me to do things I love—then this is not okay with me. I’d really like to discuss an actual strategy. Thank you for your time, and I hope we can talk soon.