We were all very positive. Since I started outpatient rehab, both physios (pool and land) were asking each session when my post surgery appointment would be. They had their list of questions they wished me to ask. But really all their questions came down to one, can they push my rehab work to the next level. We all thought I was ready. Muscles that were not working before were now beginning to engage. My right foot and leg were gaining more movement each day. We were all very positive. The post-op appointment was scheduled for mid-day Saturday.
I was so positive that before my appointment with my surgeon I had brunch with my housemates to talk about what would need to happen for me to move back to my actual home. We talked and laughed, we ate and we drank. Moving back home seemed possible within the fortnight. I was looking forward to being back in the Adelaide Hills, ready to take the next step to get on with my life. After brunch, my housemates kindly dropped me off at Wakefield Clinic where the Wakefield Neurosurgery rooms are. I was a bit early so I walked across the road to a cafe. Upon entering I realised that I needed to order at the counter before taking a seat. So I stood in the queue. Standing without moving was still a bit of a challenge. I decided to distract myself by getting my wallet out of my bag. It wasn’t until the man in front of me turned around with a rather annoyed look on his face that I realised that in my effort of getting my wallet out of my bag that my walking stick had come off the ground and hit the man in front of me. I smiled apologetically, slightly embarrassed, said ‘sorry’, and made sure that my stick was firmly on the floor.
After I had finished my pot of tea at the cafe, I crossed back over the road to Wakefield Clinic. I entered the neurosurgery rooms, noted the other patients waiting, and knew without being told that the surgeon was running late. I waited by the reception for over ten minutes while the receptionist scowled at a computer. Eventually she looked up and apologised. She was trying to find the surgeon’s coffee preference. She looked pretty nervous. So I continued standing while the girl continued scrolling away on her mouse, searching her computer. Eventually she asked for my name and clicking once more on her mouse, she asked me to take a seat apologising to me that the surgeon was running late. I took a seat in the waiting area, pulled out my iPad, and continued reading a book that I was aiming to write a review on that weekend.
A while later, movement out of the corner of my eye brought me to attention and I realised that the surgeon was standing by me. I hurriedly put my iPad away and got up from my seat. After the friendly but formal greeting ‘Hello Katherine’, the surgeon admitted that he hardly recognised me out of hospital garb. I noted in return that pyjamas or a surgical gown were not my normal clothes choice in public. We entered his office and I took a seat on the other side of his desk. And the questions started. I was used by now to the list of questions, they don’t change much. I was also happy to start answering them, I had made progress. The surgeon was genuinely pleased at what he was hearing and there was even a couple of smiles now and then. The right foot and leg were gaining muscle function. I had progressed to the ankle-foot brace, leaving behind the heavy plastic prosthesis that they had originally fitted for me. The only slight let down in my feedback was that my left leg was not showing much sign of improvement. I think he was glad to hear me admit that I knew the surgery was necessary. Explaining the progress of my leg movement showed to him that I understood how serious the situation was before the surgery. He knew that I had questioned having the surgery at all. He knew that I only agreed after he had been very frank with me, after he had told me that I could lose movement in my right leg permanently and risked further damage to the left, not to mention other vital bodily functions. Being faced with the seriousness of the situation was the only way he persuaded me to agree to the surgery. After I finished answering his questions about my legs, he asked if he could check the movement in my legs and feet for himself. But rather than the positive response that both my physios and I expected, his response was mixed.
Once he returned back to his office chair, behind his desk, an earnest look returned to the surgeon’s eyes. A look I had seen a few times before the surgery. He told me, based on what he had just seen, that I might recover 70-80% of the function I had lost in the areas that had started to improve and progress, but where there is no or little improvement, there may not be much recovery. He then added that progress to this 70-80% mark may take anywhere from six months to a year. My brain, when hearing information like this, receives it, but it often takes an hour or two for it to truly sink in. I nodded and said ‘okay’, indicating that I had heard what the surgeon had said. The implications of what he had said not yet occurring to me. Straight after receiving this news, I was brought to attention for the second time that morning with another question. It wasn’t a question I was expecting and I knew that I didn’t want to give the answer. But I did, especially knowing that I had withheld information before the operation about the loss of sensation in the lower half of my body. I relayed to the surgeon the problems I had experienced in rehab, the divided opinions about the cause amongst the doctors and physios, and how the problem had deteriorated over the past couple of weeks. Some doctors thought that the problem was due to post-surgery medication, while others thought the problem was a result of nerve damage from before the surgery. Originally I had wanted to believe that the problems were associated with medication, but after the problems persisted some three weeks after I had finished the medication, my suspicion was that the other doctors were right. He asked me how the issue had deteriorated, so I gave him examples. It wasn’t the easiest thing in the world to say to him. And while I was explaining, trying very hard to find the right words, his whole manner changed. And what he said next, no 32 year old should ever hear said, ‘I did raise the concern that this was Cauda Equina Syndrome when you were admitted.’ It wasn’t a question, it wasn’t even a statement of fact. He didn’t explain what Cauda Equina Syndrome was. I vaguely remembered him mentioning whatever it was in the pre-op stages. He was articulating his thought process aloud. I didn’t know what he was talking about and I didn’t know how what he was saying related to my answer to his question. He then turned back to asking questions about what tests were performed before the operation. A questioning look still on his face. He asked me to get another ultrasound done at the radiology department of the hospital. This was a repeat of a test done before my surgery.
The appointment with the surgeon was soon over. I asked him the question my physios both wanted to know. He gave his permission for my physios to go to the next level of rehab. At least I could give them some good news. And by this time, my mind was beginning to spin. I did as the surgeon asked. I went to the the radiology department, put in his order for the ultrasound, and I didn’t need to wait long. Once the ultrasound and the tests that go with it were done, I walked out of the hospital, out into the fresh air, and my mind felt like it was breaking apart. And I still hadn’t consciously put together why. I decided I needed to walk, so I walked to a cafe on East Terrace, a distance I couldn’t walk that comfortably. The cafe’s seating is mostly upstairs, so with no spare tables inside on the ground level, I chose to sit outside, although quite chilly. While waiting for my lunch, my mind was still breaking apart, I tried to regather my thoughts, unaware of the creeping cold. And then I did something I never ever do. And I shouldn’t have done. I don’t like knowing the technical details of medical conditions. I prefer to be ignorant. I googled Cauda Equina Syndrome. And my world shattered. What I read was a list of my presenting symptoms from when I was admitted into hospital. I was struck again by the enormity of what I had been through. And I realised how close I had come to losing function permanently in the lower half of my body. But then what I had unconsciously already pieced together came to the forefront of my mind. And I recalled the surgeon’s words. Where there is no or little improvement, there may not be much recovery. If the health problems I had been experiencing were a result of nerve damage before surgery, and there has been no improvement, then does that mean there will be little recovery now or in the future? That is a question no 32 year should have to face. My world fell apart that day. And I could no longer keep the tears at bay.