I am afraid its true, Doctors don’t like Chronic pain patients!
Yesterday I had an appointment with a consultant who specialises in pain, it was not the first appointment and I have actually lost count of how many appointments I have had at the Pain Management clinic. However yesterday I was discharged from their care as there is nothing else that can be done to help me.
I have been having knee problems for over twenty years and for the past ten years those problems have caused disability and chronic pain, major surgery to try to repair the left knee was carried out and months of recovery followed, however a short time later and an accident at work damaged that knee and so it was suggested that I have a total knee replacement.
Unfortunately despite lots of physiotherapy and hydrotherapy, I was left in even more pain and even more disabled and it was then that the Orthopaedic team at Southend Hospital let me down.
Doctors are fixers, this is especially true when it comes to the Orthopaedic doctors, they are presented with patients who have anything from a simple wrist fracture to someone who has multiple life threatening and complicated fractures and they actually do manage to fix what appears to be impossible to fix. The pain management team offer many ways to help people who are in need of help, Pain management courses, TENS machines, Spinal Cord Stimulation and of course medication.
However I am a problem, apparently I can’t be fixed and the symptoms, in this case pain can’t be masked with any of the options available and so therefore I end up sat in front of a consultant who hasn’t got a clue what to do and this must be so frustrating.
Of course chronic patients bring an extra layer of problems, we unlike most other patients have a deep understanding of what is going on, we spend hours upon hours searching the internet and we gather in forums and discuss what has happened. The last thing a consultant who is baffled needs is a patient sat there telling them what the problem is and what they want done to try to resolve the issue.
In my case the problem is that the knee replacement prosthesis is clonking and whilst this can be quite common, in my case it triggers a massive spike of pain and so transferring to and from my wheelchair or just moving my leg to get more comfortable scares the hell out of me in case the knee clonks and I’m in even more pain.
I have offered a solution to a few orthopaedic consultants at Southend hospital, the solution for me is to amputate the leg above the knee and having no joint would eliminate the clonk and the pain that it gives me. Naturally these fixers who are used to spending hours upon hours in theatre fighting to save legs are horrified at the request, they have refused my request stating that “they swore to cause no harm” in their oath as a doctor. They also state that I will suffer extra nerve pain and more disability and so they wont amputate the leg.
What they don’t actually realise is that harm is being caused, I have lost six years sat here with a knee joint that they put in that is causing me pain every minute of the day. I have tried looking into what my rights are, how I can force them to help me. I don’t care about the extra disability, in fact I believe I would be less disabled as I would be free to move around without the fear of the joint clonking. Just yesterday I was in my wheelchair and I leant forward to kiss my daughter and that movement made the joint clonk, my poor daughter didn’t get a kiss, instead she got a torrent of swear words as the pain shot through my leg.
It’s so frustrating and upsetting when we attend a hospital appointment hopeful that this time we will get help and we then leave without any answers. Hospital appointments can actually be damaging to chronic pain patients, we learn to come to terms with the pain and we then try to get on with life the best we can. When we have an appointment with the pain management team or a specialist, we start to hope that we will get help and we also have to then recount what has happened and how it impacts our lives and I have on many times when explaining this to a consultant how the problem, broken down in tears and set my wife off crying.
What is the solution?
Well its always best to write down exactly what you want to ask the consultant and make sure you ask those questions. Don’t let the consultant take control, this is your appointment and its liable to be months before you get to see them again!
Try to talk to them with respect, no matter what you think of them they are human beings (shocking I know) and getting through to them in a way that makes them empathise with you is a sure way to make them try something else when they think that everything has been done.
Take someone with you, someone who can testify to what a crap time you are having, consultants unfortunately get hardened over the years and they see quite a number of people who are exaggerating their symptoms. A husband, wife, partner, mother, father, friend, whoever it is that you are close to can be a great way to back you up.
Don’t be afraid to question their views, like I said they arte human and therefore they can make mistakes or overlook things.
Finally if nothing is helping, if the consultant doesn’t have the answer or the answer you want, either get referred to someone else who you have already researched and you know can help or stop seeing the consultant and try to get on the best you can with the resources that have already been given to you. that way you wont have to go through the disappointment of being told there is nothing they can do again and again.