Multilevel spinal fusion – L3-S1 and decompression surgery – FEB 2020

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I’ve just completed my online admission form for my upcoming Spinal fusion and decompression surgery.  Earlier today I spoke to my anaesthesiologist, and he was lovely.  Very kind, very caring.  I had written a summary of what happened at my last surgery.  Namely, that I had a total abdominal hysterectomy and suffered post-operative bleeding that wasn’t picked up.  I had five days of excruciating pain because they didn’t provide appropriate pain relief, they treated me as a drug seeker.  And they didn’t provide extra steroid cover which is essential for me, because I have adrenal insufficiency.  I was close to death when I messaged my sister and asked her to rescue me.  She had me transferred to the public hospital ER across the road, where they discovered I’d lost almost half my blood and they finally gave me pain relief.  They transfused me and told me outright that if I’d stayed at the private hospital I would have died.

Earlier I’d spoken to the receptionist and she was very concerned. She called me to let me know that she’d read my history sheet and wanted to make herself available to answer any questions.  She told me that she would get my anaesthetist to phone me, and discuss everything with me as well.

When I was talking to him, I could hear the panic in my own voice.  The last week has been rough. And the next week will be rougher.  Exactly one week to my surgery.

My anaesthetist read my history and asked a few questions.  He repeated thing back to me to show that he understands.  He offered me lorazepam on arrival, to calm me down. I accepted that offer, with gratitude.  Given my anxiety levels at the moment, I will be terrified by Monday the 24th.  He even offered to meet me in the carpark, if necessary.  Talk about your “above and beyond”.

Which is great, because I really need this level of care.  This is why I am putting myself over $10,000 in debt and having this surgery privately.  I would not get this level of care in the public system. I would not be able to consult my surgeon several times.  I would not be able to speak to my anaesthetist as often as I need.  And I would not be able to get through this surgery without the level of concern that my medical team are showing.  I feel as confident as it is possible for me to feel. I trust these people, if anything goes wrong it will not be through their negligence.

My anaesthetist went to great pains to explain that this is a very big surgery.  That I would be under anaesthesia for eight hours, and that would ”knock me around a bit”.  Previously the biggest surgery I’ve had was the hysterectomy, and apart from the complications, this surgery is a much bigger deal.  He explained that my throat would be very sore afterwards, as would be my shoulders, from lying face down, unconscious, for eight hours or more.  He was concerned because of my rheumatoid arthritis, and he wanted to warn me that the pain could be quite severe, and asked if my shoulders were affected by rheumatoid arthritis (yes.).

He promised me that he understood the steroid cover I need.

And he talked about my opioid tolerance.  He said getting my pain under control post-op would be challenging.  He told me that this is a very painful surgery, and promised they would do everything possible, but it will be a very painful recovery.   He said I will wake up to pain and they would work hard to get my pain levels managed.  He promised me they’d keep me on my current medications and dosages, and add some fentanyl vis PCA, so I can control my own analgesia.  If that isn’t enough, they will transfer me to ICU and give me ketamine infusions.

I feel both much calmer having talked it all through with him, and more terrified.  Filling out the forms and talking to my anaesthetist has made it all very, very real.  And I feel that horrible, gnawing panic.  Sleep will be hard tonight.

But I also feel better. I know he is taking me seriously and is genuinely sorry for my previous experience and I believe that he will do everything possible to control my pain.   

I will probably have to attend the pre-admissions clinic.  It’s an eight hour surgery, and its complicated.

I have an information session with the practice nurse on Friday, to give me the opportunity to ask any questions and she will also talk me through the recovery, rehab, what to expect, all of that.

And then on Monday, in one week, I will have the surgery.

I have been resolutely positive.  I am terrified and feel like I am going to die.  This feeling will get worse as the date gets closer, but I am committed.

My daily pain levels and disability have gotten to the level of severity where my life I have no quality of life anymore.

I need help to do almost everything.  I can’t walk more than 10 metres.  I can’t leave the house. Most days I can’t drive.  I can’t watch a movie at home, let alone go to the cinema.  I can’t eat out. I can’t even have a coffee out.  Walking is agony, even with the walker. I’m not strong enough to self-propel my wheelchair.  Any position other than lying flat on my back is agony.  Even lying flat on my back is sometimes agony. Every day I experience pain levels that are an “8” and above.

My life is quite simply, pure torture.

This surgery has the potential to give me a life back.  To reduce my disability.  To reduce my pain. Best case, in a year I could be running again.  Most likely not, but very likely that I will be able to walk again.  My pain levels should halve.  Which to me, would be bliss.  It’s possible I won’t need opioids anymore.

I’ve been off my rheumatoid arthritis medication for three weeks now, in anticipation of this surgery.  My RA has roared back to life, but its still no where near as bad as the pain in my spine.  I don’t know if my RA is actually less severe now, of if having spent three years with this excruciating pain in my spine has “recalibrated” what I consider severe pain.  The pain in my spine is much, much worse than anything RA can dish out.   But my RA is still active, and certainly adds to the pain. 

My life is just pain and work.  This surgery has a chance to change that.  So I’m focussing all my energy on that idea…that I will be a functional human being again after this surgery.  I have a very high pain tolerance, as most people who’ve lived with long term severe pain do.  It worries me a little when my surgeon and my anaesthetist warn me that the pain when I wake up with be bad.  But its just something I have to get through, to get to the goal – walking again, without severe pain. 

I have set myself a goal of walking around the pond again. I haven’t been able to do that in well over a year.  I’m not setting a time limit on my goal I will work my ass off at rehab until I CAN.  And that’s all. 

Resolutely positive.  I’m doing this alone and I am answerable to myself.  I don’t need a cheer squad, I know what I want.  Gym. Walking.  Cycling.  NORMAL things.  Abled things. 

Life is very hard when you’re disabled and alone.  My life is about to get a lot harder, but after that, after the recovery, my life will be much, much better. Resolutely positive.

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