Scar tissue that I wish you saw - my pain journey so far

What’s your favourite song? Like most favourite of all time? For me, it has to be ‘Scar Tissue’ by the Red Hot Chili Peppers, and I've loved it for years. There's just something about Anthony Keidis’ voice in harmony with John Frusciante in the chorus that's always struck a chord with me. It’s always been a song that I've loved, and I decided a long time ago I wanted it played at my funeral. I'm not even sure why to be honest, I just did. It's funny how life can imitate art, and now ‘Scar Tissue’ is more relevant to me than ever.

So, what actually happened to me that sent me on my chronic pain journey, you ask, and why the dubious connection to the red hot chili peppers? 

Well, the story so far is I tore a disc in my lower back (L5/S1), and the disc herniated out to the side (also commonly known as a slipped disc). This compressed my left sciatic nerve, leaving me with constant sciatic pain. If you've ever experienced sciatica you'll understand how truly excruciating this pain is. If you haven't then I'll give you a quick description of mine (because nerve pain is very individual interestingly!) - it's like someone sends an electric shock down my leg into my ankle when I move. My leg constantly aches. At night, electrical pulses run up and down my leg and it will physically twitch around. Sometimes it feels like someone has pinched the inside of butt check really tightly and won't let go. Sneezing or coughing can be agonising when it shoots pain down your leg. I've lost feeling in some of my toes and my outer calf feels like it's half asleep all the time.

Anyway, this all happened during my first pregnancy. I was only 25 weeks along, and was having a complicated pregnancy as it was, but suffering such bad sciatic pain that I could hardly move landed me in hospital for most of the latter part of my pregnancy. I couldn't have surgery to release the nerve while pregnant, so it ended up being 7 months before I was operated on. 7 months is a long time to live in agonising pain - so bad that I couldn't stand up straight or walk properly, lift or carry my daughter, and sitting was so painful I would lie on the floor in hospital waiting rooms. My neurosurgeon promised it would be a quick surgery to release the nerve and hopefully the pain would disappear. She managed me to schedule my surgery for the week after our initial consult, and I spent the week desperately wishing away the hours and dreaming about finally being free from pain.

Post-surgery I was devastated to find that the pain persisted, although not quite as intense as pre-surgery.  The word devastated actually doesn't even come close to describe how I felt when I realised that pain was permanent. I felt like I had been handed a life sentence. 

I begged my neurosurgeon to operate again. I was certain the disc had re herniated, and the disc was compressing the nerve again.  She ordered another MRI to find out exactly what was happening before she could consider surgery. The MRI showed that scar tissue had formed on top of the sciatic nerve, keeping the nerve permanently compressed. There was a significant tear and general degradation in my disc. She told me, regretfully, that she couldn't operate again. Removing the scar tissue would only encourage more growth of new scar tissue, probably more vigorously than the first time.  There was nothing surgically that could be done, and to date, there is no known way to remove internal scar tissue without a high chance of new scar tissue forming in the same place. She discharged me from her care and sent me down the path of pain management.

At first, I tried everything possible to find a cure for my pain, convinced that something had to be able to take the pain away. Surgeons, specialists, injections, burnt nerve endings, steroids, pain killers and more pain killers, physiotherapy, chiropractors, massage, acupuncture, hydrotherapy, tens machines, support belts and so on. Surgeons told me there was nothing they could do, specialists told me to get used to it. The stranger the therapy, the more they promised to help, but nothing did. 

No one promised a cure. No one delivered one.

Eventually I got admitted to hospital for an inpatient rehabilitation pain management program. It was a 2-week program aimed to help a group of patients learn to better manage their pain and improve quality of life with a chronic injury. There were about 8 of us in the group, one young man and myself were the youngest there by a good 20 years. It was good to go through the program and meet other sufferers, but it didn't help as much as I had hoped. It taught me a few valuable things though. First was that I needed to accept my fate, and then work out a plan to manage flare ups and bad days. Mostly it highlighted the huge gap in knowledge and resources available for someone young with chronic pain, especially someone with young children. It’s also where my idea for this little blog started!

After the pain program, I started to work towards acceptance of my pain. The support of my family and friends, especially my husband and my mother, has gone a long way to help this process. My psychologist has also been amazing at helping me come to terms with my situation. She has helped me regain some quality of life by deal with my depression and calming my anxiety and mother guilt (there’s still a way to go on that one!). I still have pain, and a lot of the time the pain gets on top of me and I struggle to cope, but I am learning to balance it better.

I didn't chose this fate. I can’t blame it on anyone. I was just failed by my own body. Well-meaning friends suggest therapies I've already tried and failed. Well-meaning strangers suggest I try outlandish therapies, insisting they'll work wonders. Worst of all is the assumption by most; that because I look normal I must be, and the judgement I receive when people see my mother lifting my children or groceries out of the car while I watch on, or see me sitting on the bench at the park watching my daughter play rather than running around with her, or see me telling her when she is crying that I can't pick her up because my back is sore. That judgement hurts. Sometimes it feels like it hurts more than the pain itself. All because of some unwanted, misplaced, scar tissue.

It's somewhat ironic that ‘Scar Tissue’ was always my favourite song, yet scar tissue is the thing that has caused me so much pain and grief, and changed my life irreparably. My hidden injury that no one can see, but I wish they could.

‘Scar tissue that I wish you saw’. Couldn't have said it better myself Anthony Keidis.