Following the appointment at Johns Hopkins, my husband and I headed to the next location to see another neurologist who specialized in pain and hard to treat neurological conditions. She was as honest and forthcoming as the previous Johns Hopkins neurologist. After reading the operative report and the information submitted by the company monitoring my nerves during surgery, she confirmed I did have a spinal cord injury.
During the office visit, she spent time explaining how the injury affected the nerves on my right side and I would continue to have weakness in both arms and legs. She also diagnosed me with Cervical Dystonia and explained that my Essential Tremor was getting worse based on her review of the medical records. She explained a few options for treatment and asked to work with a local pain management doctor.
Driving home, my husband and I spent a lot of time thinking instead of talking. I had a spinal cord injury, but how did it happen? Why did it happen? And why did the surgeon not tell us the truth? We finally knew what was wrong after so many months and while we should have felt empowered; the hardest thing to understand was why we had to go to Baltimore to uncover the truth?
Arriving home seemed surreal. We left thinking I was going to get better (or at least I was told that I would), but came home knowing I was permanently injured and life as I had known was no longer. We knew we had a lot of decisions and plans to make. However, where do we start? I wanted to rewind the entire day. In fact, I wanted to rewind my life until I got to the part where I had decided to have surgery.
I had a lot of sleepless nights during the week and what kept going through my mind was the neurosurgeon’s lies and how he told me I was his favorite patient and he was praying for me. During the last appointment and the last time I would see him as a patient he asked me to have another MRI to rule out MS or other serious neurological diseases and to see a neurologist he recommended. It seemed as if he did all he could to avoid telling the truth.
I saw his suggested neurologist a few months later — an employee of the same hospital where my surgery took place. We decided it would be interesting to hear his diagnosis. During the hour-long appointment he wouldn’t let me answer any of his questions. Since I was already diagnosed by the two Johns Hopkins doctors (information we didn’t share), we were curious as to how he would handle the appointment. I asked him specifically if I had a spinal cord injury. He said it was doubtful this was my problem. I asked him if he had talked to the neurosurgeon about my case. He indicated that he had not talked to him; however, later he said that the neurosurgeon had told him that he thought I might have MS. Did or did he not speak with the doctor who did the surgery?
During a follow-up appointment with my local neurologist we learned that he had spoken to the Johns Hopkins neurologist and that the two of them would both be coordinating my treatment. During that same appointment, he found a large knot on the back of my neck. I was once again scheduled to have a CT of my neck. Once I had the CT, the radiologist came in and asked if I would have a MRI since they spotted something that needed further review. Even after having both scans, there was uncertainty about the knot and whether it was caused from the spinal cord injury. A week later I had a biopsy done, but there was still no diagnosis. It seemed with each passing day that I developed additional symptoms.
At that same appointment, my medication was tweaked due to the tremor, muscle spasms, nightly bladder incontinence and ongoing pain in my neck and right arm. The doctor scheduled an EMG (a technique for evaluating and recording electrical activity produced by skeletal muscles) for my right side as well as for my lower back and legs since I began having stiffness in my legs and difficulty walking. He also contacted a therapist to provide cane lessons, so I could learn how to walk with it properly.
A few weeks following the EMG, my husband called my local neurologist after he caught me climbing up the steps on my hands and knees. I admitted to him that I had been having a lot of pain in my left leg and was unable to go up or down the stairs. The neurologist felt it possible that I could have a blood clot so we were asked to go to the Emergency Room for an ultrasound. Luckily, there was no clot and I was released with a diagnosis of unspecified nerve damage, told to rest, and given stronger pain medication.
As if we weren’t handling enough, I received additional Long Term Disability (LTD) paperwork from my employer. Along with contacting the neurosurgeon for the operative report and office notes, the disability company wanted my husband and I to complete 20+ pages of additional LTD application. I was still unable to write, therefore, my husband completed the application in his spare time.
Around this same time, I began noticing that I was turning inward and spent too much time in bed — only going to physical therapy or doctor’s appointments. I was sinking into a deep depression. I felt sorry for myself and couldn’t find a reason to get out of bed unless I was forced. Within that dark place, I was mad — mad at the doctor for the lies and for ruining my life; mad at myself for being so naive and trusting. Now, I admit, I was even mad at God.
With those feelings, my husband and I finally discussed the comment made by the Johns Hopkins neurologist — “I hope that you have a good attorney.” Neither one of us thought that we would ever have to hire an attorney. We knew nothing about lawsuits, medical malpractice, etc., but what we had seen on television. We talked to a few family members and close friends and all thought we should at least get the opinion of an experienced attorney. We spoke to several and all felt we had a solid case of medical malpractice and that the doctor had deviated from the standard of care. Should we proceed, did we have the money, energy, time? I thought I would be going to back to work soon. If we didn’t pursue a lawsuit for us, should we do it to prevent others from going through the same ordeal? We knew what we needed to do.
©My Unplanned Life and www.shakinguplife.wordpress.com, 2011.