The pain in my lower spine has been ever increasing over the last two years. For the last 18 months, at least, it has felt like a knife stabbed into my lower spine, that twists every time I move. The pain is constant and intense, an “8”. But when I move the pain becomes a “9” or a “9.5”. It’s completely disabling, and I am unable to have anything like a normal life with this pain.
I have degenerative disc disease, facet joint arthritis at all five lumbar levels, facet joint arthritis that is severe at the lower three levels, and neural forminal stenois bilaterally at the lower three levels, and central canal stenosis. In short, my spine is a mess.
The nerve roots are compressed at several levels. I have numbness and weakness down both legs, though in a different pattern on each leg. I have 100% weakness in my left calf muscle, I am unable to raise my own bodyweight, which means I walk with a pronounced limp. On the right I have hip pain, and knee numbness and often feel like bullants are biting my shins.
Nerve compression causes horrible pain in both buttocks, hips and down the back of my legs. I have been coping with ever increasing doses of opioid pain medications (oxycodone) but I have become more and more disabled.
I have bouts of urinary retention. I have attended the ER with this, because it is a medical emergency – incomplete cauda equina. But I was ignored in the ER, and after ten hours of lying on a gurney with no treatment, I left dragging my partially paralysed leg behind me.
Since then I have not attended the ER, and I never will again by my own volition.
I saw a neurosurgeon almost two years ago, and he recommended surgery. But because I have PTSD from my hysterectomy where my surgeon was incompetent and negligent, and the hospital staff (nurses and doctors) were also incompetent and failed to notice I was bleeding to death, I didn’t pursue surgery.
I chose physiotherapy and exercise. I worked hard. I made some gains, but my pain has been too severe for too long and I am no longer able to cope with this pain.
But surgery is terrifying. I lay in that hospital bed for five days. Five days of agony. OF begging for help. I wasn’t given pain relief. I was either ignored or ridiculed and told to “stop making such a fuss”. The nurses treated me like a drug addict, and told me I shouldn’t need pain relief. So they didn’t escalate.
A physiotherapist tried to get me out of bed. I stood, but was soon overwhelmed with nausea and vomited all over the ground. She was openly disgusted and treated me like a naughty child. She told me I wouldn’t get better if I didn’t try harder.
The nurses cleaned me up but there was no kindness. They treated me as if I were sub human, not worthy of their time.
The fact was that I’d lost half my blood after the surgery. I had terrible bruising and you could clearly see where the blood had pooled internally, leaching into my tissue. All they needed to do was take a blood test, check my haemoglobin. They didn’t. And almost killed me.
When I was finally transferred to the ER across the road they did a haemoglobin and it was 68. They finally gave me pain relief, and admitted me. My new doctor told me I’d lost half my blood and it was a miracle that I’d survived.
I did survive, but I am a changed person.
I had no support post op. When I went home there was no help from friends or family. Family were too busy. Friends actually were purposefully NOT helping. My best friend was holding a grudge for something she thought I’d done. Turned out she was wrong, I had done nothing wrong. But she visited me once, she gloated at what terrible shape I was in, and she left, never to be seen again. No help. No support. No kindness. Not even a loaf of bread or some milk. For a month I was barely able to get out of bed.
But I survived. I did emerge a completely different person. IN the past I had always helped others, listened to their problems, supported them, gave them a supportive ear or shoulder or both. Most of my friendships evolved and revolved around their problems. I was good at it. I also was genuinely unable to see someone suffering without trying to help.
My mantra was that if I could help someone, I should. So I helped friends, strangers, even people I didn’t like very much. And I taught my kids to do the same. In the beginning, I had it all. So I was more than happy to share what I had. Over time I went from successful, professional wife and mother of two beautiful kids to disabled, single mother of two kids with disability. I went from having a very happy, comfortable life with everything I ever wanted, to living on the poverty line in severe, disabling pain.
What I needed was someone like the person I used to be. But that person is gone. And I didn’t realise how rare kind, self-sacrificing people are. As soon as I didn’t have anything left to give, I also had no friends.
And given that I almost died and that not one of the many people I’d befriended and supported in the past thought it might be nice to be there for me, I wasn’t able to be that person anymore. I literally died, and no one came. It’s like that dream you have where you die, and no one comes to your funeral. Except this happened to me. Had I actually died, not a single person in the world (bar my kids) would have given a damn.
Think about what that knowledge does to a person, right after they have been through two weeks of trauma, almost died, been in such severe pain for so many days that I actually closed my eyes and was ready to die. I gave up. I was ready. I said goodbye to my kids (in my mind, because no one brought them in to visit me) and I closed my eyes knowing I wouldn’t wake up again.
But I did wake up. The transfusion saved my life. But it didn’t save my soul.
I reached out to people when I got home from hospital. I asked for help. When I tried to talk to them, they’d give me a one line answer, something caring and insightful like “Well, you’re just going to have to get over it.” And then they would immediately return to talking about themselves.
I refused to talk about them, I refused to listen to their troubles, because I’d been through a terrible trauma, and they didn’t ask nor care to hear how I was. I realised very fast that I had NO friends. Not one person cared. I was left to deal with the aftermath on my own. And I hate those people who took so much of my energy, my compassion and empathy and my time and gave me nothing in return. You can say that hate is a strong word, and it is. I never hated anyone before the hysterectomy. Now I have a list.
I preferred my life before I learned how to hate. But something this big can’t just be “think happy thoughts” away. Particularly when several people went out of their way to kick me when i was down. And happily admitted that they’d been waiting for that opportunity. That’s next level cruelty. Not one of those people was able to articulate what I had ever done to hurt them, except the friend whom I proved wrong. They just thought I needed taking down a peg.
The trauma was severe. The pain was unbearable. I had no support so the trauma became Post Traumatic Stress Disorder. Which clearly few people understand. One of my “friends” invited me to talk to her, and when I did she told me to “think positive”, write a gratitude journal, and recognise that “EVERYONE has pain, you’re not special”, that we all have problems, that her pain was terrible too and I hadn’t been there for her while I was busy dying in hospital. The least I could have done was answer her facebook messages while I was slipping into a coma.
But she epitomised how everyone treated me. I don’t know how some people sleep at night.
The point is, I refused surgery and choose severe, daily, ongoing pain rather than face the surgery, and the vulnerability of relying on doctors and nurses for my every need, for my very life.
I wake up every morning with horrible pain down my legs. I usually sleep 4-6 hours, before the pain wakes me. I am ALWAYS woken by pain, every day. I never have good days. The pain never goes away. The pain is always and “8” or above.
And I am losing my mind. The trauma, the pain, my empty, isolated life devoid of friendships and relationships is a miserable place.
I am disabled. I need a walker or a wheelchair to get around. I was a very active person, it is very difficult for me to be unable to exercise, to go to gym to work out hard. Of course I do exercise, but it isn’t the way I’d like to.
And it isn’t my RA that has caused my disability, its my degenerated spine. I don’t even know how severe my RA is anymore. The pain in my lower spine and legs is overwhelming. I have sore hands and feet, and knees and hips and my right shoulder is pretty terrible, but I can’t tell how severe that pain is, because its ‘washed out’ by the severity of my spinal pain.
My RA pain was severe one, but is not severe compared to the pain in my spine. I don’t know whether my RA has improved, or the spinal pain is just far more severe pain. Not that it matters, I can’t cope with that pain anymore. I am depressed. Disabled. Isolated. Alone. I’m unable to get out of the house (that eternal suggestion that cures all ills – “you just need to get out more”). I can’t go out for dinner, or even a coffee. I can’t sit long enough to see a movie. I can’t do much of anything.
So I consulted my surgeon again, It’s time. I need this surgery, or my life is over.
The problem is I feel convinced that this surgery will kill me. Either way, I feel like my life is over.
My surgeon operates out of the same hospital where I was abused so badly.
But my surgeon is kind. Understanding. Empathetic. I’d stake my life on his honestly and integrity. In fact I AM staking my life on it.
My spine will only get worse. It’s hard to imagine “worse”. He examined my updated MRIs and showed me the problem points. I’ve never had a doctor be so thorough and explain scans and test results the way he did.
I told him again (as I did last time) about the hysterectomy and the five days of torture I endured.
He promised me nothing like that would happen on his watch.
It’s a big surgery though. 4-5 hours in theatre, a decompression and fusion. He will fuse FOUR levels. I’ve read over and over that you should never fuse more than two levels. That fusing that many levesl reduces the mobility in your spine and creates much more pressure on the level just about the four level fusion. But i have no choice.
A laminectomy would resolve the main problem – stenosis or narrowing of the spinal canal, so the nerves and nerve roots are compressed causing pain, muscles weakness, numbness and prickling pins and needles. But a laminectomy involves removing the back of the spine, and my spine is already inherently unstable. I would also have laminectomies at multiple levels, and this would further destabilise my spine.
I have spondylolisthesis at L3/L4, and while it is only grade 1 (the mildest grade), it has slipped significantly in 18 months. Removing the lamina would only exacerbate and speed up that process and there would be another spinal surgery in my future if I don’t have the fusion now.
So he needs to fuse four levels levels, L3 down to S1. Afterwards I will have a lot less mobility in my lumbar spine, but I should also have a LOT less pain.
The recovery will be long. And painful. He told me that immediately post op, I’ll be in the ICU, closely monitored. I will probably be in the ICU for two to three days, and then be moved to the ward for another four days. A week in hospital in total.
I’ll be encouraged to walk from day one, and move as much as possible. I’ll be given strong pain relief, and as much as I need, he is aware of my current opioid use, and he will treat my pain appropriately, understanding the significant tolerance I have built up.
He understands that I have adrenal insufficiency and that makes any surgery inherently more dangerous for me.
He understand that I have a rare bone disease, and my bones are extremely dense. My lumbar spine is 7 standard deviations more dense than a normal person of my age, my femur is 4 standard deviations more dense than a normal person of my age. Anything over 2.5 standard deviations is a definite disease process. My results are a one in three million finding.
But it is impossible to know if my bones are extremely dense and extremely hard, or extremely dense and extremely brittle. Once my neurosurgeon starts cutting into my bones, he’ll find out. There is no way to predict. If my bones turn out to be brittle, it will increase the difficulty of the surgery and the recovery by a large margin. But he is prepared for the possibility, and he has a plan.
He had all the right answers. He is a very calming, soothing person. He is gentle, and extremely knowledgeable. He didn’t rush me, in fact I felt like I could have stayed and asked questions all afternoon and he would have accommodated me. He told me to call anytime if I have questions. He said I could make another appointment if I wanted to discuss it more.
I told him I want to go ahead but I need to get my head around it and deal with the trauma first. He told me to talk to my loved ones and support circle. I almost said “Yeah, I’ll talk it through with my dog, she’s my support system” but I didn’t think he’d find that funny.
I trust him. I don’t need someone to check on me post operatively, and make sure I am being looked after. This neurosurgeon will look after me. If something goes wrong, it won’t be because he didn’t notice a post-op complication.
Then the next big issue – he is ceasing private practice in a month. If I want him to operate on me, in a private hospital, it needs to happen within four weeks.
The alternative is have the surgery done in the public system. Which means it will take longer, he estimated 3 – 6 months, maybe longer. I will get a call one day and have to take the date offered. I would have no control over when the surgery would happen, its take the date offered or go to the bottom of the list (barring a very good reason, of course).
If I go private, I have more control.
If I go public, I don’t have to be in the same hospital where I was tortured and abused and almost died.
If I go private I need to have the surgery done very soon.
If I go public, I will have to wait and have absolutely no control over when the surgery will happen.
So I’ve decided to try to go private. I have to phone my health fund to make sure I am covered for the surgery, my neurosurgeon said a lot of health funds have dropped cover for this type of surgery for all but the highest tiers, because its expensive. It’s a major surgery, the hardware is expensive, the theatre time is significant. So I am hoping I AM covered. I want the choice. And now that I’ve decided to have the surgery, I may as well get it done fast.
That does NOT mean that this is easy.
I told my mother and she only said “good, I’m glad you’re over it.”
Nothing I said to her in any way should have made her think I was “over it”. Booking the surgery is an extremely difficult step. Its the necessary first step. I have been having panic attacks for weeks. I have been working on getting the courage to face this surgery for two years. It took a lot of courage to get the MRI, to see my neurosurgeon. Like I said, no support. I pretty much get scoffed at if I mention PTSD or trauma. My mother is doesn’t believe in psychological illness and is “no good with that emotional stuff”.
A lot of people aren’t. Even people who I know DO care don’t want to talk about it. Or don’t know how to talk about it. When you’re talking about trauma its very easy to misstep. It’s hard to talk about. It’s hard to know what to say.
Here’s a tip. Ask. Ask questions. Don’t jump to conclusions. If I say I’ve booked the surgery don’t say “Oh Im so glad you’re going through with it and you’re over the trauma”. I’m not. Try saying “Yay, good you for booking the surgery. How are you feeling about it?”
The first way gives me no opportunity to talk. I need to talk. The second option gives me the chance to talk, or to say “terrified. I can’t talk about it right now, can we talk about it later though?”
I have a session booked with a psychologist who was recommended by a friend and who specialises in PTSD. That appointment is a week away. I’m hoping he’ll be able to fit me in for some intensive sessions, if the surgery is to happen in the next four weeks, I will need that.
I also have a basal cell carcinoma I need to get removed. Its on my upper lip and therefore its complicated surgery, I need a plastic surgeon to remove it. I was hoping to have that smaller surgery first, to “prepare” in a way. But seems unlikely at this point. I’ll have to have the spine surgery, recover and then have the skin cancer removed.
And while it is the safest of all skin cancers, and unlikely to metastasize, it is STILL a skin CANCER. It’s a high risk skin cancer because of the location on my face, and because I’m immunocompromised. That surgery isn’t trivial either. Nor is the worry of cancer. I am always that one in a million patient. Always.
I also have a bout of iritis, or my GP thinks its iritis. I really need to see an optometrist to be sure. I have some drops, but iritis needs steroids. My eye is red and painful and it feels like iritis.
It’s all just a little too much.
I don’t talk to people about my health because they give me the eye roll. My sister, my pseudo sister, my friends, they all make it clear they’re bored and they think I’m a hypochondriac. They think I”m faking. They think I’m making it up. They think I don’t really see all those doctors.
It’s very cruel.
I learned a long time ago not to talk about my health. Its why I started writing about it.
I honestly find it hard to believe that people can be SO cruel, to someone who is very sick, who is in terrible pain, and is disabled. They have no conscience whatsoever. I guess not believing me releases them from any responsibility. They can bully me and say nasty things, and refuse to help, because I’m not really sick, right?
Or…they’re appallingly selfish, privileged, cruel human beings.
But I digress. I’m in a terrible place. I hope my health fund gets back to me soon, I need to know if going private is possible. That’s step one. There are a lot of steps after that.
But I have to have this surgery. My life is pure misery and has been for a long time. No one is going to help me, I guess I never really expected anyone to. It would have been nice to have some support though. One of the theories on why some people get PTSD and others do not is centred around how much love and support and empathy and compassion the person has after the trauma. Those who don’t have support are many times more likely to develop PTSD.
I don’t have any friends or family to talk to, but I will have a psychologist. And I can write about it. That helps.
And like everything else, I will get through it. One step at a time.