This is part two of my time in hospital recovering from my three level spinal fusion. I need to blog about it to remember what happened, how I felt, how I made it through. Part one is here.
Day four in hospital, and my pain was finally under control. Bilateral injections into my L3 nerve roots had tamed the unbearable pain in my hips, caused by eight hours of lying on my belly, anaesthetised, crushing the nerves as they passed through my hips, so that they fired constant pain signals. The relief was palpable…because the pain just stopped. Instant. Those shots went in, and I felt the pain shoot around the entire length of the nerve, from my spine, down through the front of my hips and on down towards my knees and beyond…and then nothing. Blissful nothing!
By the time I was back on the ward I was laughing and joking with the wardsmen. I wanted to tell all the nurses I was better, I was ok. Some of them were clearly very worried about me, and they couldn’t believe the transformation, and the speed of the change.
Thanks to my neurosurgeon.
Having a neurosurgeon who cares about my pain levels, and actually knows his stuff, and knows what to do about said pain makes all the difference. There are no words for my gratitude for the excellent care he provided. He came when I needed him, he explained patiently, he empathised with the pain (there was nothing he could have done different to prevent it) and he had a treatment plan, which he implemented as soon as was practice. I could not recommend a doctor more highly. (PM me if you want to know his name).
That nerve pain was the worst pain I’d ever experienced. Looking back, I don’t know how I made it through those first four days. It felt like one long day, from waking up from surgery, to four long days of agonising pain with only brief snatches of sleep, to getting those cortisone injections in my L3 nerve roots, to finally having the agony cease, and experiencing only the ‘normal’ or ‘expected’ amount of pain from the surgery site. Which, when you’re having three levels of your spine fused, is still considerable. But acceptable. Workable. Doable.
While I had been functioning, to an extent, during those four days, doing my required walking around the wards, talking to my mother and the nurses, I have very little memory of those days. I was running on sheer adrenalin and determination, knowing that the pain in my hips and thighs was nerve pain, and the only thing I could do about it was MOVE those muscles in the hopes that the inflammation and swelling would reduce, and the pressure would move off of the nerves.
Now, that the pain was only coming from the surgical sit, it was what you would expect. Ortho surgery is always painful, and a multilevel spinal fusion is considered one of the most painful surgeries to have. I was warned of this, and I would tend to agree.
I couldn’t lie on my back and rolling over from one side to the other was exquisitely painful. Once I made it onto my side though, the pain reduced, and I could sleep again. During those first four days, there was no true sleep…just little snatches of unconciousness, never longer than 20 minutes. I’d wake from sleep with a start, because of pain, look at my watch and realise that only 20 minutes had passed.
I started sleeping 2-4 hours stretches overnight. I’d sleep for maybe three hours, then be awake for an hour or two, but then sleep another four. It wasn’t enough, but it’s the best I could do on those rock hard hospital beds, confined to one immovable position. I started dreaming of my bed at home, hoping I was still on schedule to go home in three days.
On day four, after those injections, the pain in my spine felt very much like it did before the surgery – sharp, stabbing pain. Like a knife. BUT, most importantly, the gnawing, thrumming, constant electric pain down the back of my legs was gone. GONE!
The relief! I don’t know how I lived with that pain for so long. Now that it’s gone, I must have been mad to keep on putting up with it. My quality of life had to get down to zero before I could book the surgery and take control.
I guess that’s how PTSD works…my psychological fear and pain was greater than my physical pain. Until one day it wasn’t. And on that one day I realised I couldn’t live this way anymore. I had no life, I never left the house, I barely left the couch, severe pain was my only and constant companion, never dropping below an “8” and thoughts of suicide were plaguing me daily.
My life consisted of enduring. There was no joy, nothing to look forward to. Just me and the couch. Not a life at all.
Nerve pain is the worst pain I’ve had to live with. Opioids don’t touch it. I was taking large doses of oxycodone and it was doing nothing. While in hospital I was prescribed amiltriptaline, and it took the edge off. if I’d known I would have taken amiltriptaline sooner, but I was prescribed it more than thirteen years ago, and I still remember the side effects. Not pleasant. But better than that pain.
I’m still taking it, because I have a real fear of that pain returning, of there being a need for repeat injections, of suffering that pain again, but I am tapering down, and will be off it in a week.
My surgeon arrived for his daily rounds on the afternoon of Day 5, and he commented on my being “a different person”. I thanked him profusely. I felt like this was the first time I’d really talked to him since the surgery, as before that day I’d been so out of it on medication and exhaustion from dealing with the excruciating pain, that I doubt I made much sense.
He talked me through the surgery. Previously he’s reassured me that everything had gone perfectly, text-book in fact. We’d both had concerns pre-op given the instability of my spine, the degree of degradation, the degree of nerve pain before the surgery, and what effect, if any, my rare bone disease would have.
I have extremely dense bones. My femoral neck comes out to 4 standard deviations higher than an average person my age, and my lumbar spine measures at 6 standard deviations. I’ve had it measured three times over the course of six years, the results are steady, and always the same. It is not an artefact.
Anything over 2.5 standard deviations more dense than average is considered a disease state. But this finding, bone density this high, is so incredibly rare, that there isn’t a disease that describes me. It’s something along the lines of osteopetrosis, though more severe than the standard adult course, and not as severe as the infant course which is fatal.
I was planned to have a bone biopsy, to find out if my bones are incredibly dense and incredibly hard, or incredibly dense and incredibly brittle, but I hadn’t had the biopsy done before surgery. So we didn’t know what would happen when my neurosurgeon cut into my bone.
There was a real fear that my bones could be very brittle and collapse under the pressure of the surgery. My surgeon was doing a laminectomy (removing the bony cover at the back of my spine) to allow more space for my compressed nerves and thereby reduce the pain, weakness and numbness caused by this nerve compression. Because my spine was already unstable and removing this bone would make it more unstable, I also needed a multilevel fusion, from L3- S1. Three level fusion. This is a big surgery, eight hours under anaesthetic, but the big fear with me was that my bone would crumble. My surgeon was prepared, he had a plan, he explained that he could use cement to shore up the bones, and reinforce the site. He’d had plenty of experience operating on severely osteoporotic spines in the past. He was prepared for the eventuality and he was confident in the plan.
As he was walking me through the surgery, telling me that everything had gone perfectly, and in fact much faster than he’d planned, I asked him about my bone density – what did he find when he cut into my bones? Were they ultra-dense or ultra-brittle?
He laughed and said “How could I forget?” and then told me that my bones were incredible hard! So much so that he, and the surgeon assisting, were afraid that they would break the instruments! Between them they had around forty years of experience doing spinal fusions, and neither one had ever seen anything like it, bone as hard as mine. Bone that could break instruments.
The surgery had been difficult only because my bones were so very dense and hard. It took a little more elbow grease and effort to deal with my bones, but it is fantastic news that my bones are hard and dense and strong. My bone density is so rare that no one really knows what it means, apart from widespread pain and early onset osteoarthritis, but this result bodes well for my future in terms of fractures.
One of the wonderful things about my neurosurgeon is that he never makes me feel rushed. Before the surgery I consulted him many times. I asked the same questions, over and over. I made conversation, just to get to know him better, get a feel for him as a person. Decide if I could trust him with my life.
PTSD made me highly anxious, untrusting and very fearful. But he has a calm and patient nature. He answered the same questions, over and over. He elaborated as much as I needed, repeated himself as often as I needed him to. He never gave me the eye-roll or ushered me out the door before I was ready. He understood my terror of this surgery, and of any surgery, he understood my history and how it had affected me, and he genuinely wanted to help.
That morning as I thanked him, and he asked how my time on the ward had been, I told him that this experience was completely different to my hysterectomy. Everyone had been wonderful to me, the nurses, the wardsmen, even the food attendants. I thanked him for giving me all the extra support I needed, and for replacing that terrible, horrific experience in my memory with this one.
Despite having suffered excruciating pain for the first four days, at no time did I feel ignored and worthless. I knew everyone in my care team was trying to help. And at no time was I in danger of dying (although there were times when PTSD made me afraid I would) I knew I was safe.
He looked genuinely elated to hear this. There are great doctors out there. People who became doctors because they want to help and they want to heal. My neurosurgeon is such a person.
My experience this time was so different BECAUSE everyone cared about me. My surgeon rounded daily and was easy for the staff to contact. He came to the ward when he was needed, when my pain was out of control. The nurses were caring and efficient. The came quickly when I pressed the buzzer, unlike last time when they just closed the door and ignored my buzzes. I knew they were doing everything they could to help, and it was my job to breathe through the pain, stay calm and do everything they asked of me.
What was different this time? Why was my care so much better?
I think its two main thing:.
Firstly, I was in ICU for my entire stay. I believe there’s a higher level of care in ICU. Even when I was no longer on all the monitors, I was still on the ward. The staff here are used to dealing with complicated patients, and they are well drilled to report and escalate situations.
And second, my mother was there with me. A patient alone is easily ignored. Easily forgotten. But when I family member or loved one is sitting there asking for help and bearing witness, it’s much harder to just walk away.
My mother and I have had a difficult relationship, but when I woke up in the horrible pain, I begged her to stay with me. To please not leave until my pain was addressed. I was terrified, and to her credit, she stayed. She has been working hard to improve our relationship. I’m glad, but it’s a long road. But we’re working on it and I’m grateful that, this time, she was there for me when I needed her.
The next three days in hospital were uneventful. Time spent resting in bed, time spent sitting up in the chair, and time spent mobilising around the ward. On Day 6, two nurses who’d looked after me at my worst came back on shift. They weren’t assigned to me, but I walked over to them while doing my ward laps, to say “hi”. Both looked genuinely thrilled to see me looking so much better, and up and walking. They commented on how terrible they felt for me, I’d been in such terrible pain. One gave me a spontaneous hug that was genuine and heartfelt. I got a little teary.
The other nurse told me I was a rare patient, because despite being in horrible pain, I’d never “lost it” with the nurses. I didn’t get angry, or abusive, as some people do. (she was quick to state that she understood why people react that way sometimes). She marvelled that I’d continued to smile and be respectful throughout the worst pain. She told me I was a great patient, and she admired me. Damn, I think I have something in my eye…
It was lovely to see them, I told them they’d helped me through some of the very worst days of my life, and I would always be grateful.
I would never have believed, before going in for surgery, that before I left I would be hugging and hugged by the nurses.
And because this experience was good (intense nerve pain notwithstanding) I am more open and less afraid of surgery in the future. I know I need a skin cancer removed as soon as possible, and I am accepting of this. Ofcourse it’s a much smaller surgery, just a little spot on my face, but I know I’ll get through it. It has to be done, its still a skin cancer, afterall.
I still have PTSD. It can’t be erased so easily. But I am much, much improved. I have faced down and conquered my greatest fear. I truly believed that I would die during or after that surgery. I had to get to the point where my life no longer held any pleasure, only pain, to be ready to book the surgery. Where the fear of death was equal to the fear of continuing to live with the pain. I had to hit absolute bottom, and even live there for two years, but finally I conquered that fear. And now I have a future opening up in front of me.
My surgeon talked to me on the final morning and he too gave me high praise. He told me that if I’d had I had the surgery sooner it would have been a much smaller, simpler surgery. I would have experienced less pain and had a much easier recovery. But he understood that this surgery was Everest for me, and he complimented me on my bravery, my determination to get back on my feet, and my attitude. He too commented that I was a rare patient in that even when the pain was excruciating, I kept smiling. He complimented me on my positive attitude and my determination. His words meant a lot to me.
I’d told him at one of our appointments that my goal was to walk along the beach. He told me to send him a photo of me on the beach when I do. He has no doubt that I will get there.
And somehow, through him saying these things to me, I felt healed. I felt like myself again. The ‘me’ I was before the hysterectomy. The ‘me’ who was strong and patient and kind. The ‘me’ that I lost when every important person in my life abandoned me at once.
I was lost in that very same hospital, two years previous. When I woke from that surgery and was ignored and left to die by my surgeon, my nurses, the hospital administration, even a physiotherapist. It broke me. Then when my family dismissed my experience and left me to cope with the aftermath alone, and when my closest friends abandoned me, another part of me broke. Completely. And I thought irreversibly.
I’d felt worthless. I’d almost died and no one had done anything to prevent it. No one had even cared that I’d almost died. No one would talk about it with me, I got the eye roll and empty air. No one answered my messages, my pleas for help. I was left alone, abandoned and I felt invisible and worthless. No one checked on me. No one messaged me. And when I messaged my closest friends, they didn’t respond, and then blocked me on all social media.
I had been a good person before the hysterectomy. I helped people. I listened. My mantra was “if I can help, I should” And I did. Even people I didn’t know or didn’t like very much. I was strong, I had time, I had empathy, and I gave people a shoulder to lean on and a sympathetic ear.
Not one of those people gave me anything in return. I disappeared and no one noticed or cared. It was like attending your own funeral and realising that no one came. Not one person in the whole world gave a toss.
The PTSD set in, and my feeling of utter worthlessness continued. I had to haul myself out of my isolation and try to engage with the world again. Not an easy thing to do when every thing you believed about yourself and the people who you love has been shattered. It took me two years to book this surgery. Two years of constant, terrible pain finally gave way to courage.
Now the surgery is done, and I am recovering and all I see ahead of me is LIFE. This surgery is going to give me my life back. My surgeon has given me the opportunity to get my life back. But I had to slay some formidable demons to put myself in his capable hands.
And there is a long, long road ahead, but I’m ready for it. My left leg is weaker than before, my legs are heavy and slow. I have bowel control, but still some bladder accidents. I need a lot of help from the kids with day to day life. I am weak, and fatigue easily. Having been off my rheumatoid arthritis medications for over three weeks, my RA pain is roaring back to life. I am still very much disabled by my pain and disease.
But…I’m in recovery now. Instead of each day getting a little worse, now each day is getting a little better. I want that walk on the beach. Its ALL I see. I will get there. I have my determination back, and I have my sense of worth back.
I am not garbage. I am not worthless. I am not rubbish that my loved ones can just ignore and walk away from. It was NOT my fault, it was theirs. I did nothing to deserve that treatment, I was a good person. And they all broke me, but now I am healed. My faith in myself has been restored. And I restored it.
I am me again. I have my sense of self. My positivity and empathy have returned. My strength. My determination.
The term “warrior” never really resonated with me. I see it all the time – RA Warrior, chronic pain warrior, fibro warrir. We ARE warriors against our disease and our pain.
But I never felt it. Before. The word, the title “warrior” never sat right on my shoulders. I never felt like a warrior.
Now I do. I am a warrior. I have faced down my biggest fear, and I have survived.
I am a warrior.