Seeing Stars & Other Signs of Pain in Recovery & Hemiparesis

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, 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.

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            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. 

Challening, but not impossible thanks to therapy and the desire to overcome. 

Challening, but not impossible thanks to therapy and the desire to overcome. 

This way Forward: Finding Hope in the Face of Adversity

We are often reminded by our circumstances that life rarely goes according to plan, and when it does, it is indeed a rare blessing that must be treasured. The past year alone has been a harsh and humbling reminder of this. But even with such uncertainty, one must always keep moving forward and appreciate that any situation has the potential to get better. It is with this hope that I have overcome significant challenges which have threatened my resolve on more than one occasion. I have also had the privilege of meeting others who inspire the same feelings through their sense of determination and their unwillingness to remain stagnant. As the end of October nears, I look back, proud of the accomplishments I have made as well as those made by others on similar journeys. 

Chris Cusano, 'Playing for the Cure Brainstormin' Event

Firstly, I have to start by mentioning one of my new favorite bands, Broca’s Area, and fellow central-neurocytoma survivor, Chris Cusano, who with great effort and dedication to brain tumor awareness hosted an event September 19th, “Playing for the Cure…Brainstormin’”. The event was described as “A give back music festival to benefit the Yale Brain Tumor Center” and featured along with Broca’s Area, was the equally amazing, Goodnight Blue Moon Group. The night was filled with survivors, supporters, clinicians, musical talent, and the raw energy of those passionate about the cause. Mid-way through the event, neurosurgeon Dr. Joseph Piepmeier, M.D. of Yale New Haven Hospital graced the stage and before starting an inspiring speech about the Cusano family, he humored us with the repercussions of his ill-fated choice of selecting none other than a Pabst Beer. After his perfectly delivered commentary about his subpar beverage, he moved us with his appreciation of the generous contribution the Cusano family has made to benefit the much needed and ongoing research efforts in treating brain tumors. More of Chris, his family, and the event can be read on his blog at:

Path of Hope with my Family & Friends

University of Bridgeport PAI students

Next, I was able to participate in the much anticipated, “Path of Hope” by the CTBTA at Hammonassett Beach in Madison, CT. Meeting other survivors and volunteering was truly inspiring and heartwarming, but nothing compares to the tremendous gratitude I feel for the CTBTA and Kimberly Canning for bestowing on me the privilege of announcing the Reginald Anderson Memorial Scholarship. It was started in honor of a young man who tragically lost his battle with brain cancer but who will forever live through his legacy of giving back. Additional information may be found at With my own University of Bridgeport PAI graduate students present, I was not only allowed the privilege of honoring Reginald but afforded the opportunity to share my journey from being a clinician now working full-time in academia; hence, why I was so honored to have been asked. The event also featured guest speaker, Amanda Tronchin, who shared her harrowing experience, her triumphant recovery, and current status as a college student at Northeastern University. All the individuals I encountered whether they be survivors, caregivers or clinicians inspired hope and the feeling was truly infectious. 


Had the honor of speaking today about certain aspects of my journey as well as make an honorable mention of the Reginald Anderson Memorial Scholarship. Mentioned a special and beautiful friend with a memorable role in my recovery. Crowd enjoyed the story too! Thank you #CTBTA and #universityofbridgeportPAI students. #therightsideofperfect

Posted by The Right Side of Perfect on Sunday, October 4, 2015

Retro Fitness North Haven, CT

After the event, I signed up for a local gym membership at Retro Fitness to continue where I left off at with outpatient Physical Therapy. I could not be more enthusiastic about starting this endeavor as I feel I have been blessed to find a facility that is not only near my residence but also one with a staff that is caring and supportive. At first, I was apprehensive about using the equipment or participating in a fitness class as I have difficulty either maintaining balance or with keeping my right leg on the machines. I felt like all eyes would be on me but I quickly realized that others were inspired by my coming to the gym when they approached me and told me that if someone with a cane can come, then they had no excuse.  So today, I celebrate two weeks since my return to the gym and I hope to keep going and participating in the classes offered.

Lastly, this past Friday I had my first 6 month follow-up after a year of having MRI’s every three months. As always, Dr. DiLuna provided me with the images from my MRI and thank God, I was blessed with a negative scan. I was grateful to share that since my last visit with him, I was now driving and had regained a little more sensation and movement in my foot. With some encouraging words from my surgeon regarding my own concerns, I was on my way with the hope that my progress will continue with more to report at my next appointment six months from now. 

Taking life one step at a time...

In conclusion, I have learned and sometimes still struggle to remember that you have to keep going and plan for tomorrow. If nothing else, this sense of determination will give you something to look forward to, but throughout the process, you just have to keep hope.