Pissed off, 22, and stuck with a softball sized nerve tumour

I want to kind of start this article by explaining why I’m writing it. First, I’m writing it because I’m upset about the experience I’ve had and the experience I still currently am having within the medical system and want to share my experience. Second, I’m writing this because although I am upset with the individuals that are working on my case, I think that my situation is a reflection of a larger systemic issue with our health care system. Canadians seem to falsely believe that we have “the best healthcare in the world”. This, to me, is a huge misconception. There are faults in the system, one being the length of the waitlists. This is possibly due to the medical residency cut made in the 1990’s. There are many elderly people that now more than ever need care, but as a result of this cut there are not enough doctors and surgeons. Further, the doctors that are available are flooded with patients and thus are overworked. Unfortunately in 2015, the government made another cut to medical school enrolment. As a person tangled in the system, knowing that there are cuts being made when more doctors are needed is frustrating. Aside from my situation, there are still a lot of people in Canada that don’t have a family doctor.

My journey starts in March 2015 when I began feeling pain down my leg. It was an electric type of pain, and it got worse over the months. I started seeing a physiotherapist in September because the conclusion by doctors was that I had either inflammation around a joint in my back or a herniated spinal disk. I finally got an MRI in January because physiotherapy hadn’t been helping, and by the end of a month I was diagnosed with a nerve sheathe tumour in my lower spine. To put it simply, I have a tumour growing on a nerve. As you can imagine, this became very painful for me, especially since the nerve that the tumour is on happens to run down my left leg to the tip of my toes. When I was diagnosed with this tumour, I was obviously shocked, but I decided to stay positive, stay busy, and stay distracted. I was told I would be seeing a neurosurgeon at the beginning of February because the tumour had to be removed. I was eager to start my journey to recovery and get rid of this foreign mass growing in my back.

When February rolled around, I saw the neurosurgeon. For confidentiality reasons, I’ll leave his name out and alternatively call him Dr. X (alternatively, Dr. Douchebag). He was cold, impersonal, and had terrible bed side manner. I felt stupid having brought my mom, dad, and boyfriend into the appointment with me because Dr. X hardly said a word. He huffed and puffed, stared at my MRI pictures, and then in an aggravated tone muttered, “We need new pictures. I’ll see you in a couple of weeks once you get those done. My secretary will be in contact with you”, and walked out.

We weren’t impressed with how he acted, but to be honest regardless of Dr. X being unprofessional, I figured that his personality wouldn’t dictate how well he could cut a softball sized tumour out of my back.

What I didn’t know is that from that point until about mid-June I would be riding an annoying rollercoaster of waiting for Dr. X to get his shit together and take far too long to get back to me about something he promised would only take about two weeks. I had an appointment with him on April 19th so my parent came up and my boyfriend was there with me in the appointment. We had many questions for him, like potential risks, recovery time, when we would know if the tumour was malignant, and so on. He was reluctant to give proper answers. He did, however, mention that I would have possible mobility issues after the surgery, but that it wasn’t certain. He told us he wouldn’t know if the tumour was malignant until it was taken out. He then explained how he would do the surgery. Since the placement of the tumour was so odd and wedged towards the middle of my body, my pelvis would have to be broken in order for them to take it out. He would work with an orthopedic surgeon. He said to me, “We’ll have to drill through your pelvis, scrape the tumour out, and then put you back together with plates and screws”. Nice.

He expressed that he would want to get the surgery done in May, which I was pleased to hear. I asked how long it would be until I had a date and he said that I would hear back in two weeks. I warned him that I if two weeks had gone by and I had not heard back from his office, I would call the office and demand a date.

Two weeks did pass, and I hadn’t heard back. So I called the office. I was sent straight to the voicemail saying that the office was closed until May 16th. I was livid. I had not been notified about this and I was also supposed to have had a surgery date by now.

When the 16th rolled around, I called again. Either that day or a few days later, I was told that a surgery date is almost scheduled and that I should go in to sign surgical forms on June 9th. I went in and spoke with Dr. X. We signed forms, and he seemed to be confident with how he would do the surgery. He had me sign papers and didn’t notify me about any risks. He had me sign a blood transfusion consent form, but didn’t express that it was an actual worry. Anyhow, all surgical patients need to sign a blood transfusion consent form so I didn’t see it as a big deal.

Finally, a few weeks later in late-June I received an official surgery date. My surgery was set for July 11th. I was so excited, yet so nervous. I was still annoyed with Dr. X and how he treated my family and me, how he was borderline neglectful and how he had no compassion, but hey, I had a surgery date.

From that moment up until July 11th I put my entire life in order. I took time off of work and got a co-worker to take over my role as manager while I was away. I told my friends and family the date. My parents booked a hotel to stay in Kingston with me for a week. I did all my laundry. I cleaned my house. I replaced my bed sheets so that my boyfriend would have a comfortable place to sleep while I was away and so that when I came home from the hospital I would have a comfy, clean bed to sleep in. I made sure my cats had food and litter. I spent as much time on my feet as my tired mind and body would allow me because I didn’t know when the next time I would walk normally again was. I tried to organize everything so that I wouldn’t have to bother other people around me while I was recovering and so that I didn’t have to stress about petty things.

When July 11th came up, I was nervous, excited, scared. “After the surgery, things can only get better”, is what my friend Sam said to me a few days prior. I figured Sam was right because at least I would know that I didn’t have a possibly malignant growth sitting on a nerve in my spine. Things would get better. I had a painful and sleepless night, but I didn’t care. I got to the hospital at 8:30am, registered, put a hospital gown on and laid in a bed. I was in pain but I still didn’t care. In the light purple gown I held my boyfriend’s hand. He sat on the side of the bed. My parents were there too and planned to stay for the week. There was stress and worry in their eyes but they stayed strong for me and wished me good luck as if it was my first soccer game as a kid.

Around 10:30am an anesthesiologist and a few other doctors crowded around me. They explained the surgical process to me and informed me of risks that Dr. X had failed to tell me about. One risk was permanently losing vision; the other was that a blood transfusion was actually quite likely.

These risks were scary but the anesthesiologist was kind. He told me the surgeon would be ready for me in ten minutes, and that I would be brought down to the OR then. Not five minutes later, Dr. X came rushing up to me, seemingly in a panic. He said the following “I’m going to have to reschedule in two weeks with you”. I sat there, stone faced. “The orthopedic surgeon went into hospital last night. I don’t want to get another surgeon right now that doesn’t know your case. Safety first. I also think there could be a better was to do the surgery. Safety first, right?”. And then he ran off.

I couldn’t believe it. “That guy is a fucking cunt”, uttered my boyfriend. I looked at my parents and they looked shocked, not saying a word. A nurse came up to me and said, “I’m sorry, there’s been an emergency on the neurology floor so Dr. X is needed and we’ll have to schedule your surgery”. But that’s not what Dr. X had said. It didn’t make any sense. “You can get changed and go home”.

When I got home I called Dr. X’s office and not so surprisingly, his office was now closed until August 2nd. What. The. Fuck.

It’s mid-August now. I’ve been on a cocktail of drugs — including morphine, hydromorphone, laxatives and sleeping pills — since the beginning of April as well as a bunch of different pain killer combinations since January. My concentration is horrible. I had to take a medical leave from school. The worst part is, I still don’t know what happened that day.

On August 2nd, I didn’t receive a call like I should have. I waited until the 4th and called. I spoke to Dr. X’s receptionist and explained to her the situation. She doesn’t even know what’s going on. When I told her that they told me three different stories as to why I was cancelled, she said, “They’re all full of shit. This is all bullshit. I’m tired of the operating room and of surgeons lying to their patients. It’s not fair”. She also told me that Dr. X is now going on vacation until August 23rd. I proceeded by calling patient relations and making a complaint. I also stated that I didn’t want Dr. X as my surgery anymore as he has been difficult to work with throughout this entire process.

To sum up, here are my issues:
1) Dr. X has never followed through with what he says and is not punctual. He has promised to be back in touch with me in a certain time frame and has always exceeded said time frame.
2) He has taken time off and/or closed his office without notifying me (and probably not notifying his other patients)
3) He has lacked bedside manner and has been abrasive towards my family and I. Further, he has done a terrible job at answering questions.
4) I was blatantly lied to by him and the hospital staff on the day of my surgery.
5) There is a huge lack of communication amongst surgeons and administrative staff.

Now it’s a waiting game.