Driving to Johns Hopkins went quickly considering my husband and I were both extremely nervous. Would we learn anything? Would they be able to help? We arrived an hour early giving us time to relax and organize ourselves prior to heading into the hospital. We had a list of questions and copies of all MRI’s, x-rays and appointment records, including the operative report completed by the neurosurgeon.
We arrived at the appointment, filled out new patient paperwork and were called back within a few minutes by the neurologist himself. He escorted my husband and me into his office and immediately stated that I didn’t have MS or ALS even though those were diagnosis mentioned to us by the neurosurgeon. He indicated he could simply look at a patient and tell if they had either illness. It was a relief hearing this, but it didn’t explain any of the things I experienced since surgery. He then concentrated on the operative report, asked to see the most recent MRI, as well as the one prior to surgery. He placed the MRI disk into his computer, asked a few questions while it was loading and then studied the MRI scans for several minutes. He then looked up and without hesitation said, “I hope that you have a good attorney. You can see on the MRI where the neurosurgeon damaged your spinal cord.”
That moment, that one single moment — from the time he said the words — I felt as if time stopped. Call it an out-of-body experience or something else, I remember looking down from the ceiling and seeing the three of us talking. In fact, when I think about the doctor making the statement, I can’t seem to recall his face or the words being said to me. I was an audience member listening to the dialogue — not a participant in the conversation. As I looked closer, it WAS me receiving the horrible news, and with that shock, I was back in the chair I never actually left. Had I experienced time standing still or had it literally stopped?
I regained clearer thinking and remember looking over at my husband in disbelief. He was pale as if the color had suddenly drained out of his face. The next part of the conversation was just as hard to hear. The doctor pointed at my spinal cord on the MRI and said “there it is, there is where he injured your spinal cord.” It was so obvious even those with limited medical knowledge could see it. He also went on to explain “There is really nothing we can do to help you other than manage your pain and try to treat your symptoms. You now have to think of yourself as if you were injured like Christopher Reeve. Sadly he didn’t get better, we just watched him manage his pain and be more comfortable with his injury. You will also need to teach your brain and spinal cord how to communicate again since the nerves were damaged for a rather long period of time.”
He showed us the MRI prior to surgery without an injury, and then side-by-side, the MRI with the injury. He said “It’s not rocket science; you went into the operating room with a herniated disk and left the operating room with a spinal cord injury.”
After the shock and the extensive conversation, the doctor did a complete neurological examination — one of the best I had experienced. We discussed medication, the side effects and other issues I was experiencing. He then asked what were the three side effects I wanted to concentrate on. With my head spinning, I told him that the pain in my arm was first; bladder problem was the second, and third was the balancing issues.
We asked a lot of questions regarding possible future recovery, including stem cell. The doctor explained that while stem cell was progressing they hadn’t been able to map the cells and the technology for this was perhaps 10 or 20 years away. We asked if there were other side effects that could occur, but he side-stepped the question. We ended up being with the doctor for more than an hour and a half., but I remember thinking a few weeks later it felt like we were there for days.
The doctor asked if I would return in three months, but in the meantime, he would work closely with my local neurologist. He altered my medication indicating what I was taking caused me to sleep too much and keeping me medicated was not the answer. He also explained after a certain amount of time my body would get used to the arm and hand pain, but it would never stop hurting completely.
I remember my husband and I leaving the hospital. We were holding hands and didn’t say a word for most of the walk to the parking garage. It was like we were moving in slow motion through a fog. In fact, to this day, I don’t know how we were able to put one foot in front of the other and actually walk. I had just received the news that I was permanently injured by the doctor who led us to believe my problems were temporary. After all, since the surgery, I had 15 follow-up visits. During one of those appointments, why didn’t he tell us the truth?
I remember saying to my husband, “well, now we know what we are dealing with.” It seemed like I had to say something and when I did it was if I was also trying to convince myself. I didn’t know how to feel, what to think or how to go on living. I recalled what the doctor said about Christopher Reeve and remember how badly I felt when he was injured. I also knew he most likely had all the resources in the world available and there was nothing that could heal his injury.
As we drove along, my mind was flooded with questions. Would I lose the use of my legs, would I be able to work, would I need to walk with a cane for the rest of my life, why weren’t we told the truth by the neurosurgeon, and since I would never get over my injury, what other side effects should I expect and prepare for?
I then needed to do something that was as difficult as hearing my injury was permanent. I had to call my daughter and parents and break the news to them. My husband knew what was going through my mind and looked at me as he picked up the cell phone. My head was hurting, I was confused and emotionally drained. As I looked out of the window, I was trying to absorb all we had been told. However, all I could do was cry. Cry for the life I had lost and for the one I had yet to live.
©My Unplanned Life and www.shakinguplife.wordpress.com, 2011.