We don’t talk about this stuff often.  When it all goes wrong.  A surgery.  A procedure.  A new drug.  A new promise.  Promise to reduce your pain, increase your quality of life.

We research.  We believe. We hope. We trust.

ACpain3daysAnd then it all goes wrong.  Sometimes it goes very wrong.  Sometimes just a little wrong.  But it’s always pretty devastating when you come out of that theatre worse than when you went in.

This is NOT meant to be a post about blame.

This is about communication.  Open communication, and how that can make the ‘pain’ of treatment failure less.

The vast majority of the time, when things go wrong, there is no negligence.  Things just go wrong sometimes. Risk is inherent in every procedure.  It’s common for doctors to explain to me despite best practice, highly skilled professionals and the best technology, sometimes things just go wrong.

You weigh up the likelihood of things going wrong, along with just how badly things could go wrong, with how much pain you area currently in.  And you make a decision.  An informed decision.

As long as your doctor has been honest with you.

This is the key information.  Most of my doctors have been wonderful, but almost a week ago I had a percutaneous radiofrequency ablation.

I have had one before.  I had SI-L1 on both sides ablated.  It was a success, resulting in at least a 70% reduction in pain in my SI joint.  There was some pain post procedure…it felt like bruising, like I’d been kicked in the back.  It lasted for about a week. It was NOTHING like the internal searing, sharp SI joint pain that I had become used to.  It felt like bruising at the skin level.  It wasn’t severe.  It was tender.  It had been explained to me that this could happen, and worst case, it should be better in a week.

It was.  I never mentioned it. It wasn’t problematic enough to warrant a phone call to my pain management doctor who performed the procedure.

I still had a lot of lumbar spine pain, however, so I returned to have L2-L5 ablated.  We ran over the risks and benefits again, and again, the worst case scenario that was explained to me was this post-op bruising.

This time when the anesthetic wore off at home, I was in agonising pain.  And the pain was in a completely different area.   I couldn’t move any which way.  If I kept my spine perfectly straight, lying still, lying flat, there was no pain. Any movement caused strong, shooting pain down my legs, and sharp pains in the back of my hips. More on the left than on the right.  I couldn’t bend forwards at all.

This was completely different pain to what I was feeling before the procedure, and considerably worse pain.  Completely crippling, in fact.

I had the ablation on Thursday morning. Friday I was in agony and taking extra pain medication to cope. I didn’t call the doctor’s rooms because I knew they would tell me to wait at least 48 hours.

All weekend I was completely bed ridden and in horrible pain. Those days are a complete blur.

Monday morning I called.  Only to be told it was ‘normal to feel a bit of tenderness’.

The nurse started telling me that there can be a ‘bruised’ feeling. I had to stop her there and remind her I’d had the procedure before. This was not normal. I am used to pain, and this is terrible pain.  She told me it takes time for the nerves to die.  I told her the worst pain is in a completely different area than before the procedures.  The original pain was my lumbar spine. Now the pain was in the back of my left hip, to a lesser extent on the right as well.  Whenever I moved, I got shooting pains down my leg, and sometimes my leg collapsed out from under me.  The pain was sharp, like someone stabbed me with their dagger and forgot to pull it out.

That stopped her for a while.

I asked if I could speak to my doctor. She said  that wasn’t possible, and said that I had to wait and see.  Leave it another three days as it was likely to improve on its own, and call her back on Thursday if I wasn’t better.

She had absolutely no concept of the kind of pain I was talking about.  I felt that if the pain hadn’t improved at all in four days, it was unlikely to improve in another three.  I tried to ask her for advice.  How to manage this pain. My post op instructions advised being as active as possible but this pain was so severe that movement didn’t seem like a good idea.  So should I rest?  Ice?  Heat?  Seek physical therapy?  I told her how much oxycodone I was needing to take and she said that I should take less.  And just take paracetomol (Tylenol).  That paracetomol should fix it.

I became angry, but said nothing, because by suggesting that a mild analgesic was all I required, she was implying that I was over reacting to the normal after effects of the procedure.  She then told me firmly to call back on Thursday ‘if necessary’.

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And this is where the communication problem comes in.

Two issues.  One, at no time was it explained to me that there was the possibility of feeling worse after the procedure, of being in worse pain.  I have since read on reputable websites that sometimes the wrong nerves can be damaged, causing considerable pain.  And sometimes this pain is permanent.  This is not cheering.  And this was never mentioned as a risk.

And two, now that there has been a complication, I feel like I am being fobbed off and ignored.  I felt very strongly that I was inconveniencing her, and she wished I would just go away.

Additionally, I have no idea if my message has gotten through to my doctor.  She did not call back with any instructions for how to manage the pain. As far as I know he has no idea there is a problem.

I wasn’t dealing with the severity of the pain so I made an appointment with my general practitioner.  Not my usual doctor, but I’ve seen her before.  She also started to assume that it was just normal post ablation pain.

Seriously. I have severe rheumatoid arthritis.  I don’t complain about pain unless its’ really awful pain. Why don’t people understand this?  Why do doctors always assume I am making mountains out of molehills?

I had to ask her to examine me.  I showed her where the pain was.  She said it was likely muscle spasm and told me it takes time for the nerves to die off, and sometimes the pain gets worse before it gets better.  Fine, but then I asked her why the pain was in a completely different place to my original pain?  She had no answers.  She doubled my dose of slow release oxycodone and prescribed Valium for the ‘muscle spasms’.  She told me it could take two to four weeks for the pain to settle.

Two to four weeks???  Why was I not told this was a risk?  I would certainly NOT have planned the procedure just before the school holidays, had I known this.

Open communication.

Had there been proper communication of the risks, the complication would still have occurred.  But my kids would be at school while I rest in bed.  Not bored silly at home, knowing I can’t take them out to do anything fun. Missing out again.

Tomorrow I will call my pain management doctor again.  And see if he will make time to see me.  Something is clearly wrong, I would think that he would want to examine me.

I am not interested in laying blame, I just want help with this pain.  If it’s an irritated nerve, perhaps an injection into the nerve will calm it down. So I can walk again.

This has been a very unpleasant experience, but made much more so because of poor communication between my doctor’s office and myself.  I have spent a full week bed ridden and in agonising pain.  I have had to ask my sister to get groceries for me, to fill prescriptions.  I can’t drive a car safely.  I am completely dependent.  I need help.

I am stunned by the lack of care from my doctor’s practice.  Complete lack of interest even.  I would have found the whole situation far less frightening if the nurse had reassured me when I made my first phone call.  Has she given me good information about how to manage the pain.  She could have made an appointment for Thursday to see my doctor, so I know that I will be seen on Thursday at the latest.  Oh, and perhaps she could have shown some compassion.

I am not interested in laying blame.  I understand that sometimes things go wrong.

I just need help.

 

Please note that the content of this post reflects the personal experience of the blogger and does not constitute medical advice. Success or failure with a drug, medical procedure, personal fitness program, diet, or psychological outlook is individual. Readers cannot assume that they can replicate any success or failure they read about in a blog. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding your medical condition or medications.