About two years ago, I assumed that the brief use of narcotics in the post-operative period would be the extent of my experience and management of pain; however, I have been proven wrong, repeatedly. I assumed my small incision would produce minimal pain, well, until it didn’t.
Initially post-operatively I was well taken care of. The transition of relative comfort to pain happened approximately two weeks later when I first experienced spasticity. I remember mistaking the involuntary movement in my arms and legs as return of function, but learned that it was not, at least not entirely. According to StrokeSmart.org, as a result of an injury to a normal functioning part of the brain, “Spasticity is tight, stiff muscles that make movement, especially of the arms or legs, difficult or uncontrollable.” For two days I went from a compliant and pleasant patient to one that was inconsolable, miserable, and uninterested in PT. My legs felt like a wet towel that was repeatedly wrung out. The nurses were angels who would manually massage my legs to help alleviate the pain. I was started on Valium and Gabapentin (Neurontin) and given Ambien to help sleep at night. Once the Gabapentin levels created the desired effect, others were discontinued, thank God because Valium was horrible.
The months that followed were relatively pain free aside from the soreness of wearing a leg brace or resting my arm on an unkind surface for prolonged periods of time. My paralysis was improving and by mid-September I had begun walking independently in my driveway, enjoying the crisp autumn air. My recovery followed the pattern noted in reduction of brain swelling evident on serial MRIs (every three months the first year). By December, I became aware of movement in my right shoulder and this was the first time I experienced pain since my Valium experience in rehab. The pain was excruciating and I found myself unable to use my right upper extremity effectively or at all, instead elevating it and carrying it like the Hunchback of Notre Dame. Naturally my elder brothers in their usual supportive fashion found an opportunity to poke fun at my inability to move my right arm often mimicking its stiffness in conversation. Eh, I thought it was funny too, but I also enjoy self-depreciative humor. This started my eight months of exclusive right shoulder occupational therapy treatments after which I was advised to seek other care as the focus was limiting improvement on other areas of need such as my hand.
I found myself walking into a Naturopathic clinic at the University of Bridgeport. Being one of the coordinators for our graduate Integrative Medicine Course, I kept an open mind. I had friends who swore by acupuncture, so I figured why not. I found acupuncture to be very effective, but extremely painful, which I expected from Eastern Medicine. I noted some improvement in pain, though not completely and not long-term. The intensity of the treatment often resulted in fevers and soreness for two to three days with one day of bliss followed by return of symptoms usually by the time I was due for another treatment. This was a cycle for a few months.
Despite pain in my shoulder, I returned to the gym at RetroFitness in North Haven, CT. Wanting to lose weight and strengthen my body, hoping it would help with issues I have with balance, I found myself going six to seven days a week. Between acupuncture and the gym, I felt I could tolerate the pain and that I was at least trying my best to manage. Unfortunately in December, I started experiencing incredible pain in my left leg, “the good leg”. I awoke one morning to find a red, angry, swollen knee. I remember rolling my eyes and feeling annoyed, I wanted so desperately to ignore it. I felt like Kimberly “Sweet Brown” Wilkins, “ain’t nobody got time for that”. Alas, fearing immobility would affect my ability to drive, I scheduled an appointment with my primary care physician who got me a consult with a Yale orthopedic surgeon stat. After x-rays and an MRI, I was told I had evidence of osteonecrosis, likely from exposure to steroids around the time of surgery. To make matters worse, I fell in the comfort of my home, sustaining an injury that for the lack of a better expression, made me “see stars”. It took me 15 minutes to get off the floor and the next morning I was completely unable to move my right shoulder. It was a devastating blow to my ego and self-confidence. I was referred to Dr. Patrick Ruwe of CT Orthopedic Specialists, who examined my shoulder and leg and said you don’t need bed rest or a knee replacement, you need therapy. So there started my journey with STAR therapy in Hamden, CT where I continue today. I placed my gym membership on temporary hold and workout aggressively at rehab with their amazing team of therapists. It is not without pain, from manual manipulation of trigger points and a rolling pin like contraption for IT Band Syndrome pain, but seeing stars that will result in long-term relief is worth it. I just say to myself, “no pain, no gain”.
This past month I walked two blocks at work for the first time and it felt great to rely on my leg again. To be independent. To feel strong again.
In addition to my shoulder and leg pain, this past month I have started experiencing terrible headaches originating from the incision site. At first I attributed the pain to normal stressors such as work or social obligations; however, the pain progressed from headache to nauseating and debilitating. It often feels like I sustained a recent injury to the incision site. After speaking with my neurosurgeon I was told that post-craniotomy pain was common and again was advised to try acupuncture as there has been relief noted by neurosurgery patients.
This past Friday, I had my recent MRI and was told it was “clean”. I felt such relief, actually blessed. I have now officially graduated my second year since surgery and will only require annual MRI exams instead of every 3 months or six months. I have accepted pain will always be present to some degree or another but that I will have to be more creative in my management.
After all, the show must go on.