How Did I Convince Surgeons to Amputate My Leg?
A controversial question however one that I am often asked when speaking to other sufferers of CRPS/chronic pain. Unless you’re in that head space, it’s so difficult to understand why an individual would wish to amputate a limb - especially against doctor’s wishes. Having said that, I am contacted a number of times a week to guide people through the process so what better way to speak to the masses then to write a blog post!
Please note that I am completely aware that people do not always have their limbs amputated for physical conditions and it is not right for everyone. Please ensure that you research, research and research into your specific condition. I am not an advocate for amputation as such however I am aware how necessary this post may be for people stuck in a horrible situation.
My Personal Story
As a 16 year old, amputation was merely discussed in passing as a potential solution to my pain. After many surgeries and procedures, I was pretty hooked on the idea but wasn’t sure of the implications with my condition or whether it was right for me. After more research, I was adamant that amputation was the right choice so I underwent 6 years of fighting with a number of surgeons, doctors and specialists.
As a 16 year old, I wasn’t taken seriously in my fight for amputation. I was treated as a child, to the point where a surgeon once wrote in my referral letter ‘it is not easy to know what you want when you are only young.’ Surgeons were reluctant to ‘take the plunge’ and offer me a solution to my never-ending pain and they were eager to refer me onto another specialist who may be able to take the responsibility. I had researched tons of surgeons and was desperately searching for any solution. I was in such a terrible place and would often think about how I would be able to have it amputated. Thoughts of train ‘accidents’ and chainsaw-related incidents swarmed my thoughts but the respect for my own life (very fortunately) stopped me from ever pursuing anything too serious.
After contacting over 50 surgeons and having appointments with most of them, I eventually came across a surgeon in Blackpool, 7 hours from my home, who had previously been on a podcast looking at the potential benefits of amputation for chronic pain sufferers. Immediately, I picked up the phone to his secretary and managed to book in for a private consultation the following morning. Starting my travels at 6am, I travelled up on the train and prepared for my appointment. I had all the necessary paperwork and was ready for a fight however when I arrived at the hospital and met him, he seemed to be the only surgeon who was willing to accept that amputation may be a viable option to relieve my pain. He seemed very sympathetic to my situation and seemed genuine in his approach to making my pain more manageable. We agreed between us that he would like to try a surgery that may work to relieve my pain however if that wasn’t to work, he would be prepared to amputate, as long as I had undergone counselling and a few other criteria.
Following on from the appointment, I immediately made an appointment with my GP to have a referral made to the surgeon on the NHS however months later, I was still waiting for the first appointment. I decided to look elsewhere and found a surgeon who was willing to amputate in India. I had researched into the procedure that the surgeon wanted to perform however my research had found that actually, it was extremely unlikely to offer me any solution. On a whim and just before booking my flight to India, I decided to email my surgeon to inform him that I would be going to India and whether he would be willing to see me quickly on the NHS. Fortunately, he replied and just a few weeks later, I had my appointment.
Within that appointment, we talked about the potential risks and benefits of amputation, which was mostly lead by myself and towards the end, he agreed to amputate. I was living on a cloud and was almost in tears of joy. Was my fight over? Was I eventually going to get the procedure that I knew I needed?….I suppose you all know the answer to that one!
The journey following on from that was certainly not a straight forward and lead to the amputation being cancelled and rescheduled because of more complications however for the purpose of this blog (and to not ruin future posts), I will leave my story there.
Although the fight was tedious and sometimes, I was left in the worst place in the world, it taught me a lot about perseverance and how to fight for what you believe in. After 35 operations, I was certainly ready for what the amputation was going to offer.
Here are my tips based on my experience of how you are able to approach the topic of amputation with your specialist:
Body Dysmorphic Disorder (BDD)
When researching surgeons to see who was able to perform my amputation, BDD was constantly popping up as a reason for amputation. A mental health condition where a person spends a lot of time worrying about flaws in their appearance, sometimes resulting in an individual wishing to become disabled or an amputee. Surgeons and doctors are very wary of this condition and will often shy away from amputating a limb incase this is the reasoning behind the wish - especially if all the scans and tests of the limb appear ‘normal.’
However, if you’re confident that you don’t have BDD, keep reading on!
Is Amputation Right For You?
Ultimately, the decision to amputate is mostly lead by the surgeon/doctor however there is nothing stopping you from doing your own research. I was pushed from surgeon to surgeon when I was searching for ‘the one’ and it was just the case of finding the right surgeon who believed in me and saw me as an individual who was suffering. So many surgeons were unwilling to perform the operation while others were recommending that I sourced mental health help instead of surgical options. I came armed to every appointment with my book of research and medical evidence and refused to leave the room until I had at least the next stage of my plan.
When speaking with your surgeon, you need to be able to determine the following:
Is amputation not right for you because it would have undesired results with your condition? If so, has anyone else with your condition had an amputation?
Are you being pushed away from amputation because the surgeon is worried? If so, is there another opinion you could have? What do you need to be able to do to prove it could potentially be a great option for you?
If amputation is completely off the cards, then what is the plan? What is the timescale for that plan? What are the contact details for you to chase this up?
Organisation and Planning is EVERYTHING
After every appointment, I always knew the next steps. If the Doctor X told me that I needed a referral to Dr Y, I would ask Dr X when the referral was going to be made. I would then chase Dr X’s secretary to ensure it was sent on that day. If it wasn’t sent on that day, I’d ring the next day….and then next day until the letter was eventually sent. I’d then ring Dr Y’s secretary to ensure they had received it and tried to get an appointment date over the phone, to save waiting for the post. Write a record of exactly who you have spoken to and when, in order to justify your work.
It certainly takes a lot of energy but when you’re battling with a slow system but these are the essential steps to get ahead of the queues. It took me 6 years to find a surgeon to amputate my leg - I hate to think how long it would have taken if I actually waited for the clinics to respond without me chasing them!
Don’t worry about bugging your surgeon/their team - you need to be able to get on with your life! If anything, bugging them makes them to deal with you quicker.
Be Prepared for Barriers
I’m sure if you’re reading this, you have already encountered many, many barriers to amputation. In order for my amputation to be performed, I needed to be able to visit prosthetic centres, meet other amputees, have a mental health assessment and have 2 years of counselling to ensure that I was prepared. Even when I had jumped through every hoop, I still needed to prove I was ready.
I’d suggest preparing notes of the potential barriers that your surgeon may have against amputation with counter-arguments and evidence for each point. Even if your surgeon isn’t ready to take the plunge with you, you will prove to them that you are clear-headed, confident and well researched.
Research Real Amputees
Social media is fantastic and enables a lot of people to receive support however it can also been a real hinderance when setting expectations. By all means, look at the likes of Jonnie Peacock and the Paralympic athletes as an aspiration but don’t set it as an expectation. Having a limb amputated does not make you superhuman. It’s also important to research amputees who really struggle and the daily struggles of amputees to check you’d be okay with that before you start thinking that amputation is all sun and rainbows. Take a look at my previous post to get an idea of the things that surgeons don’t tell you about amputation - http://www.jamiegane.com/blog/2017/10/25/what-the-doctors-dont-tell-you-about-amputation
Be consistent and confident - If you have done your research and feel that amputation is right for you, stick with it and be confident to medical professionals
Be open - Sometimes amputation is not the right journey for you to pursue so be open to alternatives. Be prepared to have to go down every avenue before surgeons are willing to operate as that is ultimately what they will want to do. When having a different procedure, think positively that the operation will work and you’ll be surprised how you feel - even if it’s a temporary feeling.
Keep calm - The fight can seem extremely difficult at times but it’s important to not allow it to engulf you. Allow yourself to pursue other hobbies and interests without consuming your life around amputation. Seek support from others if you’re struggling and don’t be afraid to look weak. Just because you want your limb amputated, it doesn’t mean that it isn’t a very difficult journey - speak up.
Keep happy - Keep pushing, keep trying but mostly just try and stay positive and happy. Look at what you’re able to achieve and look for those little positives in life.
I’m always there if you need any advice so feel free to drop me an email if you need any additional advice.