There’s always a catch. There was I thinking ALL I had to do was work through my intense PTSD from the near-death hysterectomy-from-hell which still wakes me every night in genuine panic. But no, there is more. Much, much more.
I consulted a surgeon, one of the best. I have private health insurance for exactly this reason. In the public system, I would not be able to choose my surgeon. Given my horrible sheer terror of surgery, I need to know my surgeon. I need to explain what happened that time I almost died, I need to explain my very complicated medical history, the bleeding out, the adrenal insufficiency, my extremely high bone density, my pituitary tumour, the PTSD, the fear. The all-encompassing, incredible fear.
I need someone who understands all of that. Someone whom I can trust. Someone who will take a proper history, understand all my complicating factors and who is happy to explain to me, step by step, how he will manage these complications if or when they occur. I need that reassurance. Do you understand adrenal insufficiency? Yes. I have a pituitary tumour, its not just exogenous steroid use. Yes, understood. I do tend to bleed a lot after surgery, for no currently understood reason. Yes, it will be handled. My bone density is 7 standard deviations higher than a ‘normal’ person. There is no way to know if my bone is extremely hard, or if it is infact very brittle. Until, of course, you start trying to cut into my bones. If they are extremely hard, it will be a much more difficult surgery. I have a friend who also has very high bone density, although not as high as mine. She had spinal surgery that became very compliated, and ultimately failed because of those ultradense bones. My history is remarkably like hers. I told my surgeon about her, and he LISTENED. He didn’t dismiss me, and roll his eyes at my stories about “my friend”. He paid attention.
And he told me that if my bones are extremely hard, he’s prepared.
And if my bones are brittle and fragile, then he can use a form of cement to stabilise my spine. Both situations make the surgery even more complicated and will take more time, but he is aware, and prepared
I need this neurosurgeon. He listens, with interest. I’ve consulted him three times, to talk through everything. First, 18 months ago, when my disc herniation because severe. At that time my left leg was partially paralysed, and I was in the worst pain of my life (apart from the head pain after my hysterectomy). I could barely walk. I couldn’t sleep. I couldn’t do much of anything. I was completely bed ridden and house bound.
I needed a microdiscectomy to remove the disc fragment that was pressing on my sciatic nerve. He also recommended a laminectomy. I told me I have grade one spondylolisthesis, and one day in the future I would need a multi-level fusion to stabilise my spine. I had a very good chance of a full recovery.
But I couldn’t face the surgery.
I chose physiotherapy. I worked hard. Months of excruciating exercises. But I improved. I went from bedridden to doing spin classes. And then I had a relapse. The partial movement in my left leg was lost again. And my right leg started to go numb. I spoke to my GP. She ordered an MRI which confirmed that my spinal disease has progressed. While my spondylolisthesis is still only grade one, the extent to which the vertebrae have slipped mean that my neurosurgeon now believes that if he does a laminectomy my spine will become too unstable. I need the fusion.
A four-level fusion. L3-S1. This is major surgery. This is 4 or 5 hours under anaesthetic, and very complicated. This is me in hospital for a full seven days, and then months of recovery at home.
IF you stick “four level lumbar spine fusion” into google, you’ll find a lot of negative results. You will also find a lot of surgeons who refuse to fuse more than two levels, saying that the long-term effects of a four level fusion are catastrophic, and it should never be done.
But I am in agony. I am losing the feeling and function of my legs. I am unable to walk unassisted. Some days I am completely unable to walk. I am in agonising pain every day. If I lie still, on my back, I can get the pain down to a 6 or so. But for most of the day it is an “8” or above. It is truly excruciating. I am back to housebound again.
It is terrible pain. The kind of pain that most people never have and never will experience. Certainly not for two years on end. With not a single moment of being pain free.
I’m used to RA pain, but this is far worse. I can’t walk unassisted. Anything more than a ten-metre walk and I need a walker. A wheelchair would be better, but I’m not able to hoist the chair into the car or self-propel very well anymore. My bladder function is compromised. Urinary retention is the most excruciating thing…it happens occasionally, and I get through it because I have attended the ER, and they ignored me. I know I;m on my own. I have no life. No social life. No close friends. My family are, to put it mildly, either oblivious or assholes.
Life is very close to not worth living. I have my two kids, and they are my only reason for being. I love them. They need me. But life is very, very hard. And this degree of pain is breaking me. I can barely think anymore, constantly trying to block the pain leaves me exhausted.
But I have to work. I can barely make ends meet, because I have used up all my savings on medical expenses. I use my very limited energy, every day, making bracelets. I am working on another business. I need money just to meet my usual bills.
My whole life is pain, and work. Once I am done with work for the day, I have no energy left. Making bracelets is physically easy, but it’s exhausting. I finish, and I need to lie down for a few hours. Then I make dinner. And then the day is done.
It’s not a life.
The surgery offers a reduction in pain. It offers the return of the function in my legs. I could walk again. There’s a change I could RUN again. I have always been an active person, I deal with all my stressors in the gym. I like to stay fit because I want to be lean and strong (which I am far from now). Gym is even more important for someone with RA, I need to exercise to improve my heart health, cardiovascular fitness, muscle and tendon strength and stave off disability.
So I finally worked up the courage to return to my neurosurgeon. He remembered me. He told me my story, he’d reviewed his file. He remembered about the PTSD. He was kind. Most of all he promised me he would look after me. He promised that nothing like what happened before could happen again. NOT on his watch.
I believe him. I trust him.
However, the surgery I now need is am much bigger surgery. I need to have a four-level fusion, from L3 to S1. A laminectomy (decompression) and a general clean up. Afterwards my spine will be much more stiff (its like that now), but the nerves will have room to move. Over time, the nerve pain, the numbness, the weakness in my legs, and the back pain should decrease.
I need the fusion because my spine is unstable. There is central canal stenosis because of the spondylolisthesis (L3 over L4) which is steadily getting worse. I have neural forinal stenosis on both sides from L3 down to L5. This is pressing on my nerves and causing left and right sciatic pain. The pain goes down into my buttocks and down the back of my legts. On the left the numbness and painful pins and needles are down the outside. My calf muscle is completely paralysed. I can’t lift my bodyweight with my left leg. I have severe muscle weakness. On the right the numbness and painful pins and needles are down the shin, and my knee is often numb. Sometimes I can’t feel or use my knee at all. But the sciatic nerve, constantly compressed, contantly ON, causes a sickening, deep, boring pain down the back of both legs.
It is the kind of intense, constant pain that has made me consider suicide. I am here because I love my kids and I believe they need me still.
My life is pure pain. I am depressed. I am never happy. I am a completely different person, because after the hysterectomy, when I really needed friends, everyone abandoned me. So I haven’t been able to talk about it, process it, work through it.
My mother just yells at me that I should get over it. So I don’t talk to her anymore.
I need the surgery. I can’t live this way anymore.
I told my neurosurgeon that I was still incredibly anxious and I would need some time. To be honest, I thought I would think for a few weeks, and then probably go ahead just before winter. The pain is unbearable and I can’t live this way anymore. But the fear…vs the pain. Terrible equation. At the time I still wasn’t sure I could go through with the surgery.
And then he told me the problem.
He is ceasing private practice at the end of February. He will become the head of neurosurgery at the public hospital, however. So I can still have the surgery, with him most likely doing the surgery in the public system. But there’s a catch.
Public vs private.
Most people believe private hospital treatment is better. It’s certainly a nicer building, newer, cleaner. But I had the hysterectomy in this hospital. I almost died in that nice, new, clean, staffed by incompetents, private hospital.
Post op, I will need to be in the ICU. I will need high level care for two days. Then another five days on the ward. Seven days in hospital, total.
In the private hospital I have choice. I will have my neurosurgeon and he will manage my care. I will choose the dates. I feel safe because my neurosurgeon will have control. Therefore, I will have control. Or the most control that it’s possible to have.
In the public system, I will have to wait. Three to six months. I will get a call one day with a date sometime within the next week. There will be no time to prepare. I will have NO control over the day, just when a space comes up, I will be offered the spot. If I don’t take it, or can’t take it (because of PTSD or anything else), I will go back to the bottom of the list. There will be no negotiation. There is no wiggle room. There will be no control over anything. This is NOT good for my PTSD.
Unbearable for my PTSD, in fact.
This means I have to have the surgery in the next three weeks. After a few nights lying awake and enduring panic attacks and having no sleep, I decided to go ahead with the private treatment, and tried to book in.
That’s when the next “gotcha” showed up.
My health insurance covers this procedure. But the rebate is woefully inadequate.
Infact, my out of pocket costs, or co-pay for the surgeon’s fee alone, with be $8,000. Then there’s the surgical assist, I’m guessing that’s another $1,500. And then the anaesthetist, usually around $2,000.
Obviously I don’t have that kind of money. I used to have savings. I spent them on previous surgeries and health care, and disability devices.
They have offered me a payment plan, but there is no fat in my budget. I would need a two year term to pay back what I own. And I need to come up with a third of the cost in advance.
So there is. After all that agonising, I can’t afford it.
I have paid my health insurance premiums for most of my adult life. For the last eight years I’ve been living on a very low income, disability, and I STILL paid those premiums. I made it a priority, because the public health system is not good enough for someone with high needs, and lots of complicated illnesses.
Thousands of dollars paid to my health fund. And when I really need them, I need this surgery, their rebates are woefully inadequate.
It’s not the neurosurgeon’s fault. The years of training and education and dedication required to do these kinds of surgeries mean that his $12,000 is reasonable.
But it is unpayable for someone like me. That’s why I have paid my health insurance premiums, despite living on the poverty line for the last six years.
I am currently trying to work out a payment plan, but I would need a two-year term to pay it all back at $50.00 a week. Which I don’t even see how I can pay. I have been struggling to meet my bills for 18 months now. Moving to this house was expensive. Fixing all the things that were wrong with this house wiped me out.
So that’s that.
I wait. And every night I wake up at 3am having a panic attack. I am far more afraid of the public health system. I spoke to my psychologist who worked in that system up until a year ago, in a senior position. He highly advised I go private, for continuity of care. Which is something that I need.
I doubt that they will offer me a payment plan that I can actually pay. I have already sold off everything I can, to meet other bills. I am out of options.
I wait. I hope. I shouldn’t be in this position. Health insurance should be adequate to cover the cost of neurosurgery. But it is not. And this is a problem made by the government and the health insurance companies, NOT the neurosurgeons.
I have paid my premiums for most of my adult life, and still I am left waiting, totally reliant on my surgeon’s practice to allow me to pay for the surgery over the course of a year. I have been waiting all day. I suspect the answer is going to be “no”. It is a lot to ask.
And so, despite having insured my health and paid 25 years of premiums, and done everything possible to avoid this very thing, I will have to wait three to six months, and will be completely at the public health system’s mercy.