In Need of Support

My General Practitioner was shocked and angry when he walked into the exam room and saw my declining appearance. After hearing about my fall, the bladder problems and the “little problem with the nerves on my right side that occurred during surgery,” he immediately left the room and went to his office to use the telephone. I heard him talking to my neurologist (who had been my doctor since I moved to Pennsylvania), who treated me for migraines and a slight Essential Tremor in my right hand (a genetic medical condition that causes a mild shaking). When he came back into the exam room, he told me that the neurologist wanted to see me immediately.

I got into the car and drove to the neurologist’s office. I was taken into the exam room and met with the physician’s assistant. She took measurements, checked reflexes and gait (a way of judging balance), examined my tremor and discussed what had occurred during the last few months. Following the initial exam, the doctor came into the room and discussed the surgery, the exam and asked if I would agree to have an MRI while at the office. I had the MRI and was told there was significant swelling in my spinal cord around the area where the surgery was done. In fact, the radiologist was unable to do a complete review of the MRI due to the amount of inflammation. The neurologist prescribed Prednisone to help decrease the swelling in the hopes of controlling the medical issues that had developed.

The following week the neurosurgeon returned from the conference and called.  I updated him on the findings from the MRI. He agreed with the neurologist giving me Prednisone, but also told me I should begin using a cane for ambulating (a fancy way of saying walking and moving around) and he would fax a prescription to the home health store. My husband and I went to pick up the cane, but were a bit surprised since it was a four-prong cane. It was big, bulky and heavy and I knew walking out of the store it was going to be more of a problem than a solution. After a few weeks of walking with the four-prong cane, I asked for a prescription for a regular cane. Since it didn’t provide enough balance I purchased an Able Tripod Cane base that offered better support and mobility.

My bladder problems occurred every third night. I began using a waterproof pad on the bed; however, there were times when it would shift. When it did, I would have to wake my husband to change the sheets while I took a shower. Still only able to use my left arm and hand, I wasn’t much help with household chores. No matter what happened or how many appointments I had, my husband never complained.

My weekly routine consisted of physical and occupational therapy, doctor’s appointments, sleeping 12-14 hours a day, medical testing — and not much more. My neurologist was the most open about what had occurred, but didn’t know how long the pain and hypersensitivity would continue. At the same time, I also found myself turning inward and only socialized with my family and the physical therapist. I was slipping into depression and knew I needed help. I felt as if someone had taken my life and replaced it with a life  I didn’t recognize. However, I became quite the actress when it came to being around others or talking to my family. After all, I signed up for the surgery, picked the doctor and always wanted to help others. Now I was the one who needed help and I didn’t know how to ask.

A few weeks after I began using the cane, I fell down the stairs of our house. The doctors asked if I was experiencing seizures, but I believed they were more of like ‘pause out moments’ since I knew I was falling, but was unable to do anything to stop the falls from happening. One Thursday afternoon, I fell in our family room and was an inch away from hitting my head on the fireplace hearth. Our sweet dog, who was in his bed next to the base of the fireplace, saw me falling and helped break my fall. As I was lying on the floor looking up at the ceiling, I remembered the last time I looked at the clock it was 11 a.m. and had I hit my head it would be at least six hours before someone found me. After this fall we decided I needed a medical pendant in the event of an emergency. When no one was home I wore the pendant around my neck.

Each time I saw the neurosurgeon for bi-weekly appointments we discussed my lack of progress. He kept telling my husband and me “to give it more time.” First he told us the pain and hypersensitivity would last for three months. When that time period passed, I was still dealing with the problems with many of them getting worse. Following six months of continued pain and hypersensitivity, the neurosurgeon extended the time period and even began suggesting other medical diagnosis. Not surprisingly, at the conclusion of each office visit, he would give me a hug and tell me I was “his favorite patient and that he was praying for me.” He also ordered additional MRI’s since he wasn’t happy with the quality of those done at the neurologist’s office. Obviously the MRI’s done at the hospital where the neurosurgeon was on staff didn’t reveal any problems. I had nine MRI’s and seven x-rays within the first six months following surgery.

Along with the pain, the falls and bladder incontinence, I was having problems with my muscles becoming stiff, cramping and shaking when sitting or sleeping. In addition, during my many medical exams, I had non-existent or lack of reflexes, noticeable weakness on the right side and began having electrical shocks throughout my body when looking down. I began having problems with the bottoms of my feet feeling like they were zapped with electricity.

Feeling beaten up and depressed, I opened an envelope from my employer and the disability company. In the two-page letter it stated that I had to complete the enclosed paperwork to see if I qualified for Long Term Disability (LTD). If I didn’t complete the forms, my employment would be terminated. It also stated I needed to have another physical examination and then the Medical Review Board would determine if I qualified. It was the most heart wrenching news I had received up to that point in my life. I had only used half of my Short Term Disability, so why was it necessary for me to complete the LTD process? I was determined to go back to work. After all, I had a great job, worked with outstanding people and thought that my condition was temporary. I called my Human Resources Manager and asked if I could have a conference call with those involved so I could better understand the STD/LTD process. She agreed; however, the call didn’t take place for several weeks.

Somewhere along the way, I came to the realization I needed another opinion as to why I was getting worse instead of better. I contacted a neurologist who I knew at Johns Hopkins. His specialty was migraines, but he contacted a few colleagues and made an appointment for me to see two doctors. Within a matter of weeks, we were on our way to Baltimore searching for the answers we desperately needed. Feeling beaten up, depressed, confused and lost — we wanted the truth, but were we ready for it?

©My Unplanned Life and, 2011.



About mswd

I am an individual living with a spinal cord injury. How the injury occurred, how I found out how severe my injury was and how my planned life suddenly became 'unplanned' is included in this blog. Also included is how the injury has tested my family and me. I believe you will discover it has been both a mentally and physically challenging ordeal and I learned a few lessons along the way. While I am still defining my life’s purpose since the injury, I have uncovered those who are injured, live with pain or have other obstacles to navigate are never able to escape. However, come with me as I explore ways to improve my life, learn to live with multiple neurological conditions, educate others and look for the silver lining. I believe with a little willpower, my caring family and God's guidance I will learn to forgive, hopefully forget how I was treated and dismissed by a doctor and uncover life's new purpose. I pray for painfree days and answers to questions that keep swirling through my mind. I also pray for a cure for neurological conditions and for the doctors to treat their patients with respect. Welcome to my journey. I would love to hear about yours!
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