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. 

7 Things Most Patients Don't Want to Hear When They're Recovering from Surgery

1.      You look Great (when we don’t):

This can be perceived as pity, especially if we’re alert and oriented enough to detect it. It’s not that we don’t appreciate the fact that you’re trying to be kind. It’s just normally, we would put more effort into our appearance than just waking up and sitting around in a hospital gown covered with mouthwash from the swish and swallow the nurse had us do earlier. I don’t remember feeling self-conscious until the day I was being transferred from the hospital to rehab. As I was being lifted into the ambulance, I remember catching a glimpse of myself in the mirror by the exit doors and I was mortified. I looked like the young girl from the original Exorcist movie and that’s an understatement. The gentleman who was getting me into the ambulance saw the color go out of my face and said “awe, honey. It’s not that bad. You look fine.” I would have honestly preferred cousin It from the Adams Family over the girl from Exorcist, only because It’s hair was smooth as if it was just treated with a keratin blow out. Just saying, priorities.

2.      No, You don’t look Different to Me

This was in response to my growing concern that my face along with the rest of me was starting to blow up from the high dose steroids, commonly known as “Moon Facies”. Obviously, when it’s happening, which is over a long period of time, the patient doesn’t notice right away so I didn’t expect my family and friends to either. But eventually, when I did start to notice, I was frustrated when people would say I don’t notice anything different, you look fine or you look the same. I tried to explain to a friend visiting me in rehab and the only way I could describe it is that my face looked like it ate my previous face. When everyone kept telling me I look like my normal self, it made me feel HORRIBLE. I kept thinking, OMG, is this what I look like all the time? Luckily, one of my closest friends, kept it real and was the first one who basically said, “No girl, you have moon facies.” I was all golden after that. 

3. You Should Really Try to Do More so Your Progress is not Stagnant.

  All of a sudden, everyone becomes an expert after YOU have surgery. This statement in particular was one of the most frustrating. I’m a pretty positive person but losing function on my dominant side and spending all day trying to compensate with its counterpart was emotionally, mentally, and physically frustrating. Then add the unsolicited advice or commentary that I am not pushing myself to my potential was not only diminishing my efforts and the improvement I was making but also my spirit and self-esteem. I literally would stay up late after everyone left and try to move my right side or stare at my hand, leg, and foot and think please move, if only a little. And that was devastating to an already bruised psyche, until it finally happened.

4.      So are you ever going to be normal again?

  I was asked this ALL the time, just yesterday in fact by someone close to me. This to me is as bad as asking, “when do the doctors think this will be fixed?” As a clinician, I can assure you, just like all five fingers on your hand are different from one another, so are patients and therefore, recovery is extremely unpredictable. When I was first told in the hospital that I was paralyzed, my surgeon honestly believed and convinced me as well that the swelling would diminish and I would awaken one day and be back to baseline. So naturally, I woke up EVERY single day for three weeks and the first thing I would check is if I could move my right side. And every day, I would be crushed to find out I couldn’t. I kept thinking if not today, then maybe tomorrow and it was a vicious cycle. One day, I decided that I would no longer think that it would be a miracle overnight and the sooner I realize this will be a process for a “while”, the better I’ll be. It was only until that moment, that I felt a tremendous burden was lifted off my shoulders and now I still take it “one day at a time”. 

5.      You should be grateful, just look at so and so. 

 This was definitely from a positive place as well but not always well received. Even though I tried to remain optimistic and keep moving forward, there were and are days where I will wake up and I’m in a funk. I feel like the donkey from Winnie the Pooh, Eyeore, “woe is me”. This can happen to anyone on a good day so certainly after surgery it would not be uncommon. And especially earlier on, the last thing I wanted to hear was about someone else’s hardship. Sometimes, it would add on and make me feel worse and worry about them too.

6.      Maybe you’ll meet someone in rehab. 

To put it in context, I was in the stroke unit and I was a 3 person assist for transfers, bathing, and how do I say this delicately, using the “powder” room. Even in this condition, there were people who unfortunately were worse off than I was. Indeed, a love connection was neither expected, pursued, nor had. That storyline is cute in Lifetime movies only, thank you, or rare real life stories in something like Glamour magazine articles.  Maybe it’s just my luck or unrealistic expectations that one day I’ll meet a younger version of Liam Neeson. Hey, stranger things have happened, but I digress.

7.  You should enjoy your time off from working and look at this like a vacation. 

Truthfully, I probably was naive enough to say that to someone before too. But let me tell you about my vacation. Once a week I would be startled awake at 3am not because a tropical breeze blew open the windows to my luxury suite, but because the tourniquet was keeping a choke hold on my arm so that the tech could draw labs (blood). And then, I would stay wide awake until 6am when I would have to use the “powder” room like clockwork. Because I couldn’t just get up and go, I’d have to page the nurse’s station and wait for 3 people to come all while struggling to control my bladder, the urge was more intense after surgery for some reason. They, the nurses, would then help lift me up, put me in the wheelchair and transport me to the “powder” room and in the end, I’d have to page them again so they could lift me up and put me on the wheelchair to bring me out. After this morning ritual, I’d have a day of PT, OT, and speech therapy where I would have to learn how to solve basic math problems of addition and subtraction, test if I could remember words like colors, objects, and pets. But, mostly I would spend a great deal of the time struggling emotionally with why I was having so much difficulty completing these easy tasks. So no, that is not a vacation. Don’t get me wrong, the resources and assistance I had were a blessing and I mean no disrespect for I am very grateful, but let me be clear, it was not a vacation and I certainly wouldn't have bought a timeshare if it were. 

All of these commonly used statements came from a good place but hopefully I was able to illustrate in this article, the effects it had on me as I was recovering from a traumatic event in my life. If anything, my hope is that perhaps someone else recovering from something in their life may not have to deal with these emotions too.