I’m home. I did it. I made it through the surgery I didn’t believe I’d live through.
It didn’t go without a hitch though. No sir. It wouldn’t be any fun if everything went smoothly, right? Well, actually that might be nice for a change…
My spine has been severely degraded from years of unchecked inflammation and very likely a rare bone disease (so rare there is no name for it) that causes my bones to be extremely dense. The bones in my spine are currently six standard deviations more dense than a typical person’s bone density of my age (49). Anything above 2.5 standard deviations above normal-for-age is considered a disease process. But my signs and symptoms don’t conform to any known disease classification. It’s something similar to osteopetrosis, though it is milder than the fatal childhood version, but far more severe than the typical adult finding. My bone density is very rare, it is a one in three and a half million finding.
Spines are difficult things. When they go very wrong, there isn’t that much that can be done. I have severe facet joint arthritis at all five lumber levels, canal and neural foraminal stenosis, spondylosis, spondylolisthesis, and multiple nerves impinged causing partial paralysis, weakness and numbness down both legs. Pretty much anything that can go wrong with a spine. And at a much younger age than you would expect.
It had gotten to the point where I could no longer walk unassisted. And even with assistive devices (walker, wheelchair) I could not travel far on my own. Too exhausting to walk or wheel myself.
I first saw my neurosurgeon two years ago, when I woke up one morning unable to move my legs. Long story short, he examined my MRI and recommended surgery. Because I have medical PTSD from my previous surgery, the hysterectomy from hell that genuinely almost killed me, I declined the surgery. I did physio, exercise, I worked. Hard. I wanted that function back.
Over the months I’d make progress, regain some strength or feeling, and then one morning I’d wake up and the leg was numb again. Or I’d lose bladder control. Or I’d have terrible urinary retention. I had incomplete cauda equina syndrome, and I knew surgery was the only option.
And the pain. Daily. Like knives twisting in my spine. But the nerve pain! Every morning I’d wake around 3am with that electric pain down the back of my legs. It was unbearable. Eventually I could take it no more. I returned to my neurosurgeon. I consulted with him several times. And then I booked the surgery.
I was terrified. I had PTSD every night. Nightmares, terror. I believed I was going to die if I had this surgery. But I went ahead. Because the pain and disability were making my life not worth living, anyway.
Being housebound is NOT fun. Its not a life at all. I was truly suffering. And I wanted my suffering to end, even if it ended badly.
My neurosurgeon is amazing. He was kind, compassionate. He never rushed me out of his office. He was happy for me to make as many appointments or send as many questions as it took for me to feel ready. I truly believed he cared about my situation, he was disgusted by my previous treatment, and he wanted to make it right. He promised if anything went wrong, it would NOT be on his watch. He would look after me. And I believed him.
My anaesthetist was also brilliant. He agreed to give me a sedative on arrival, because the wait is always the hardest. He even said he would meet me in the carpark and walk me into the hospital, if necessary. Nothing was too much.
I explained to both of them about my history – bleeding out after the hysterectomy, the bleed not being detected, emergency transfer to the public hospital, almost dying. And about my adrenal insufficiency and my need for post-op steroids – a stress dose of at least three days of double my usual dose. Without that, I could go into adrenal crisis and die. And without those steroids I would unlikely be well enough to remind them that I need steroids!
After many talks, consults, emails, and phone calls, I was ready. Surgery booked. Monday, 24th February, 2020. It was anticipated that I would spend 7 days in hospital, and most likely spend the first night in ICU.
Monday arrived and everything went to plan. Last thing I remember is my anaesthetist telling me that this next injection would make me drowsy. And then…nothing.
Mere seconds later I woke with pain exploding through out my body. My lumbar spine, my hips, the nerves down the back of my legs, my quads, the pain was intense. Unbearable. I started to tell them the pain was terrible.
Inside my head I was back at the hysterectomy. I woke up from that surgery with searing pain in my lumbar spine, followed by the worst headache I’ve ever experienced before or since. PTSD flashback.
Tears were running down my face, and they were trying to talk to me. I was in agony. And it was happening again. Unexpected pain. Pain in an unexpected place, of an unexpected severity.
I had been told several times that a multilevel spinal fusion is well accepted as one of the most painful surgeries you can have. The amount of cutting, screwing, fusing done to four levels of my spine meant the surgery took eight hours and was physically hard work for the neurosurgeons.
And still, THIS degree of pain didn’t seem right. And not in those places. I expected pain in my lumbar spine. That’s what I’d been told to expect. Instead it was down my legs, back and front, and there was no way to relieve it.
They started a ketamine infusion. I started to hallucinate. Horrible grinning creatures. Walls that turned orange liquid, fusing into a thick soup with red-tinged velvety edges. Eyes staring at me and morphing into faces that dissolved wickedly. Slobbering mouths that faded back to red velvet walls, that whorled in a maelstrom of squishy orange sludge and morphed back into undulating orange plush velvet walls, confining me and pressing down on me.
I knew ketamine could cause hallucinations, so I was (very oddly) able to remind myself this wasn’t real. That this was a ketamine side effect. So I knew what was happening, but I couldn’t STOP it. And the nausea the moving, waving walls were creating was unbearable. I’m not sure if I vomited or not, I think I did.
Someone told me I needed to try and eat something. A sandwich was put infront of me. I picked it up and took a bite. TUNA!
I have an anaphylactic allergy to all seafood. And they were feeding me seafood. I spat the mouthful, I’d barely touched it. I told my them it was fish! They looked first confused and then horrified!
It was happening again. After the hysterectomy they tried to feed me fish, despite knowing about my severe seafood allergy. How could this happen TWICE? Panic was setting in. The pain and the fear were driving me crazy, and I believed they were going to kill me. Again.
The medical team struggled for three hours to get my pain under control. I arrived in recovery at 7pm, surgery done. I woke around 7:30 in agony, and at 10:30 I was transferred to ICU. I heard them say “We’ll just have to take her up and keep trying up there.”
Eventually my body was so worn out and battered from the surgery and the ketamine that I mercifully passed out.
I woke up in ICU a few hours later. Pain. Pain in my legs. Thrumming, pinging…electrical shocks on top of a constant buzzing. Hard to describe, but it was terrible and severe. A humming, zinging electrical pain, that cycled from bad to worse. Down the front of my legs, from my hips to my knees, and a little below.
THIS was the pain that the surgery was supposed to take away! But now it was on both sides, and it was an 8+ and it escalated right up to a 10 at times. It was on a cycle of a few seconds….7.5 up to 9.5 and then down again. It was nauseating, electric pain, rising and falling but never subsiding. Never even close.
I felt panic rising. I struggled to control it. I think the ketamine had dulled my mind so much I was unable to even panic properly. This pain was worse than anything I’d ever experienced. All I could thing was “this is was post-op…this pain shouldn’t be here anyhmore”.
I was sure something had gone terribly wrong, that I was now one of the 0.01% of patients for whom the pain increased after surgery, and that they would need to take me back to theatre and operate again.
I tried to tell them the bad pain wasn’t in my spine, but in my legs. They couldn’t understand me, they kept asking about my wound. I passed out. I woke up 20 minutes later. I tried again. I begged them to stop the ketamine.
It had now been 12 hours since the I was in recovery. The ketamine made me hallucinate but didn’t take away the pain. Somehow I’d survived 12 hours of agony.
I begged them again. Please take the ketamine away…it’s making me sick. It’s gummed up my brain. I can’t talk. I can’t see anything except orange undulating velvet walls.
I also had a PCA (patient controlled analgesia) containing fentanyl. I asked them to take that away too. It wasn’t touching my pain and I felt it was contributing to the nausea.
I begged them to take it all away and just give my usual oral meds – targin (slow release oxycodone with naloxone) and oxynorm (immediate release oxycodone).
They didn’t listen. It was happening AGAIN.
No one is listening! They can’t hear me! Am I talking? Why can’t they hear me? Why won’t they listen?
These thoughts raced around in my anaesthetised mind. Panic was rising, but my senses too dulled to speak louder.
Finally, someone said “I don’t think the ketamine is helping.”
I’d gotten through, I remember trying to tell them again. Please take it away.
They did. They tapered the dose down, and by midday on day 2, the ketamine was gone.
I felt better, clearer a few hours later. The hallucinations had decreased, but the walls still bubbled and frothed at me angrily. And the pain remained. I felt I was starting to lose my mind. Again, I tried to tell them, they kept telling me that my spine was SUPPOSED to hurt. I’d just had a very painful surgery on my spine.
It took another 12 hours to make them realise the pain was in my legs and hips.
History was repeating itself: just like the hysterectomy I woke with unexpected pain in an unexpected place at an unexpected severity and was unable to get the medical staff to understand where the pain was.
The day passed in a haze of agony. I was aware that my mother was there, and was trying to help. I wanted her to speak for me, to know, to understand. I cried about the pain and she mildly scolded me, telling me it was only the second day! Try harder!
The physio came to see me, and I told him about the pain. He was abrupt, picking me as a whiner. All everyone could say to me was “It’s a very painful surgery, you just have to breathe through it.”
I knew this was different. They kept checking my wound. It wasn’t my wound.
I did a lap of the ICU with the walking frame, with the physio next to me. He was impressed, and his attitude changed. I have to walk. I just have to walk. Move those legs. Shift the pressure from my nerves. Over and over I told myself. Resolute.
The following morning I awoke in ICU again, and I knew I was dying. I could feel it. Steroids!!!
The nurse was with me, I asked her about my steroids. She said they’d been given. I asked her how much. She asked how much I usually took. I said I need double. She said, its fine.
I was still incoherent with pain, and the nurse didn’t understand adrenal insufficiency and my need for a stress dose of corticosteroids. Finally I yelled “I need to see the doctor”.
She said she would call him. Thirty minutes later they gave my IV hyrdrocortisone. I just had to trust the dose was correct.
My anaesthetist had forgotten. How could he have forgotten???
Just like last time. No stress dose of steroids. That’s the kind of thing that kills patients with adrenal insufficiency. That’s why I am a high-risk surgery patient. I passed out again.
I woke up four hours later, feeling better. The pain had calmed a little. And when your pain is a “9” to a “9.5” a little relief goes a very long way.
They decided to move me to a quieter room, but still in ICU. I wasn’t well enough to go down to the normal ward. But I was calmer and didn’t need constant watching. I begged for pain relief.
I managed to get up and walk again, with a walking frame. I knew the pain was nerve pain and the only thing I could do is try to MOVE and hope those nerves would become somehow unimpinged. That the motion would cause spinal movement and the pain would lessen.
And I had to show the staff that I am NOT a whiner. That I am strong, determined…I want to get better. I want to walk. I want to make this pain end. The way to do that was to walk. And it honestly made no difference to the pain whether I was lying down, sitting, standing or walking.
I did a few laps of the ICU. The nurses were lovely to me and were very encouraging and proud of me for walking. That spurred me on. I needed them on my side, I know what happens when the nurses don’t believe you.
That afternoon, after another few hours of the sickening, thrumming, electric pain in my legs, I burst into tears. I was utterly losing my mind. The nurse had asked me what my pain number was, and I said “nine and a half…please help me.”
She said “we’ve given you all we can give” and directed me to the PCA (Patient controlled analgesia). Which didn’t do a thing. Literally nothing.
She started to leave and I fell apart. I begged. I cried. It has been three days of excruciating pain, with only brief moments of relief.
She looked shocked and said she’d get the doctor.
I don’t know how much later, but he arrived. I was feeling ready to die (again). He was gentle, he was patient, he examined me, he asked where the pain was.
And then he explained.
Because I’d been anaesthetised for over eight hours, lying on my belly, the nerves in my hips that originated at L3 had been crushed for all those hours. Now they were still crushed, firing off constant pain signals, and it would just take time for them to recover.
He agreed that it was excruciatingly painful and he apologised, though there is nothing that can be done to prevent it. It just happens with some patients, and not others, depending on their individual anatomy.
I understood. And the understanding of where the pain was coming from helped. A lot! A large chunk of panic dropped away. The surgery hadn’t gone wrong. I didn’t need to be re-operated. This wasn’t caused by the surgery per se, but by the unavoidable position I’d lain in for eight hours.
It would go away on its own, in time.
I took several deep breaths. My head cleared, but the pain remained.
My neurosurgeon continued talking, gently.
“There are a few other things we can try… we can do some injections into the L3 nerve and numb the feeling and reduce the inflammation there. That should reduce the pain. But not just yet. I think we need to wait a little longer, see if it resolves.”
Because I respected my neurosurgeon so much, and because he came, and he listened and he didn’t rush, I agreed. He also said that being that it was now 3:30pm, he could ask radiology to do the injections, but even if he begged and promised his first-born child, it was unlikely they’d be able to do the procedure. He left telling me that he would prescribe some amitriptaline (commonly prescribed for nerve pain), and it might tone down some of the pain.
His calm manner calmed my manner. I agreed. I hate amitryptaline, but I was prepared to try. He said it would make me drowsy and I hadn’t slept more than a few snatches of 20 minutes or so in three days. Drowsy sounded good.
I accepted that I was going to have to get through another night of this. I cried in my bed, silently, for most of the night. I took all the pain meds they would allow me. And the pain never stopped for a moment.
The next morning I was given the amitriptaline, and an hour later the pain had reduced. Not gone…but significantly reduced. Seven out of ten. I’ve lived at higher than that for weeks on end. I can do a “7”.
Around 11:30am I was taken to radiology. They were beautifully kind. One tech kept making jokes, and they were funny. Wish I could remember them, but I remember laughing and being grateful for the distraction. The other tech kept pushing my PCA button every five minutes, to keep me as comfortable as possible. She watched the button and pushed it the second it was available.
I knew that the only road to pain relief was to just lie STILL, on my belly (which exacerbated the pain back up to an 8) for 30 minutes so that the radiologist could inject corticosteroids directly into the L3 nerve roots bilaterally.
Sounds easy, right?
Not so much. But I did it. The tech held my hand and pushed my PCA button. And talked me through it. “Now we’re disinfecting your skin, it’ll be cold, now he’s inserting the needle, now were going to put you into the CT scanner and make sure the needles are in the exact right place, now we’re injecting the dye to make sure the needles are in the right place.”
Three more times, back and forth in and out of the CT scanner checking the position of those needles. I just had to lie still, even though the pain made me want to squirm. I breathed. I meditated. I focussed on the sound of her voice. He couldn’t inject my nerve roots if I didn’t lie perfectly still. And if he didn’t inject my nerve roots I would have to keep this pain. I repeated that idea to myself over and over.
Finally she said “ok, injecting the anaesthetic now…you should feel it all down the nerve, it will probably hurt quite badly, but it will be over quickly And the benefit is that if it’s in the right place, you’ll know it!”
The anaesthetic went in and the pain was an electric “10” almost instantly down my leg, up around through my hips and back to my spine. It knocked the breath out of me.
But then the pain was…gone. Instant relief. I could barely believe it. From 10 to 0 in a split second.
Then he injected the steroid for long term relief and did the other side.
It was the hardest thing for me to just lie there for 30 minutes, motionless, while all of this happened. You really don’t want to be moving around when someone has a whacking great needle in your spine. Paralysis is a possibility. So is death. It was a herculean task, but it was the only way. And with the help of some wonderful people, I did it. I stayed still. And had instant pain relief. At last.
For the first time, I felt the bone pain and the incision pain in my lumbar spine. But that was acceptable. It was typical. It was the pain I was expecting.
All my panic faded away. All my anxiety lifted. Take the pain away and energy and optimism returned.
The two techs congratulated me and confessed that they’d been very worried about how they were going to get the procedure done. They’d been told that my pain was out of control and I was unable to keep still. I thanked them profusely, and praised their technical and people skills. They got me through it, and the radiologist was excellent and did the procedure in record time, yet he did it perfectly. Its as much an art as a medical skill.
Two hours later I was doing laps with the nurses, laughing and making jokes with them. I was through the worst. The severe pain was gone.
It was day 4.
Part two tomorrow.