The road to get my leg amputated due to my CRPS (Complex Regional Pain Syndrome) has so far been long, bumpy and windy; but I am getting closer to achieving the goal!
As, I've previously written my journey started with convincing my GP to refer me to a specialist, which I had a horrid meeting with a my local (for now) rehabilitation centre about this time last year (2023); then I finally met my Consultant Surgeon on the 7th August 2023.
At the meeting with my Consultant, he told me to 'go find my rugby legs again' (increase my leg muscles and fitness), reduce my BMI, quit smoking and go through a lots and lots of tests and appointments with other specialists.
September 2023, having called to get a GP appointment on the 8th August 2023, to get an appointment, I finally had a telephone consultation (let's face it they don't like seeing us patients) with my GP to discuss the outcome of the appointment with my consultant surgeon and get my referral to the only specialist CRPS team in the UK, which are located at the Royal United Hospital (RUH), Bath.
The following day, from extracting teeth with my GP, I meet my Health and Wellbeing Coach for the first time, we discussed everything my surgeon needed me to achieve and came up with a plan as to how to be successful at losing weight, getting fitter and stopping smoking (more on this later).
On the 18th October 2023, I had my first of many appointments to come with many specialists. This one was with my Occupational Therapists at Salisbury District Hospital (SDH) Burns and Plastics Department; where they explained the rehabilitation programme and recovery process, the highs and lows I will possibly experience. They were really lovely and really understood what CRPS is and its impact. Another appointment was arranged for a few months time; after I had been through more specialities.
November 2023, my appointment of the month was with my Consultant Anaesthetist and Pain Management Specialist at SDH Wessex Rehabilitation Centre. We discussed all the pain relief and other drugs I am on, what I had tried and alternative managements. He took me off opioids, no great lose as they don't touch my CRPS and just make me constipated; plus he didn't want for me to build up a tolerance to them at the time of my amputation, as he said you'll need a lot especially in the first few weeks. Instead, he put me on two nerve blocking pain drugs, which he will increase in the few weeks leading up to my operation. He wanted me to start them immediately, to get them into my system. This was all agreed and a letter was sent to me GP, where the next battle started; they refused to prescribe the drugs requested. Basically I told them to take the fight up with my consultant whom had requested this action to be taken. No surprises who won... I got them prescribed; so one nil to my consultants!
The next appointment for the month was with the CRPS Specialist Team at RUH, Bath. Two appointments in one; one with the very specialist CRPS Consultant and the other with the CRPS Specialist Therapies Team, We discussed lots of stuff, I had been through from diagnosis, to clinical trial, to specialities I had been through; and what works and doesn't. My dad and step mum attended (as it was via zoom, I had to drive to their house at the opposite end of the county); as they said they wanted to be involved and understand CRPS more. However, this comes with the caveat that as long as they don't have to put any enough in; I was told by them that SDH was too far for them to go in a day, its a 90 mile round trip; or the 90 miles it takes the to just get to my step sisters and then another 90 miles back in one day; or a one way drive to see my step brother approximately 200 miles in a day; or about 170 mile round trip in a day to see my step mum's sister; seems like a bit of a theme. They now have no say in any of my treatment, their decision is my decision!
The biggest revelation for me during these appointments was when they asked me to close my eyes and think of my CRPS leg and tell them where my 'real leg' finishes for me. To my surprised, it was already above my knee. I had never been asked or done this before with it. To me, the rest of my leg was no longer there; obviously it still is at the moment, just my brain doesn't acknowledge it anymore. Have to say it freaked me out, how powerful your brain is at working with and against its own body. The appointments were also eye openers for my dad especially! A plan was formulated and decided that I needed an MRI on my back, to rule out that it isn't causing my knee issues; a nerve connection test; plus to get lidocaine plasters prescribed for the pain; and then have a follow up once these had happened in a follow months time.
If I thought the battle with my GP after my appointment with my Consultant Anaesthetist and Pain Management was a fight, it was nothing compared to the war I was about to go through with my GP to get the experts of my condition executed! I put in an econsult for a telephone consultation to discuss the plan... rejected! I put in another one (as you can't talk to anyone at your GP surgery) with the letter from the CRPS team at Bath. I was told by my GP via text, with no explanation why... they won't arrange an MRI for my back as not medically indicated; and rejected the nerve connection test and prescribing the lidocaine plasters. I several battles with the surgery; eventually, I had to get my Consultant and team at Bath on my GP's case over all of it. What is the point of specialists giving advice to GPs, if they are just going to reject and ignore it all as they know better; as one GP told me (whom I had never spoken to before) what do I know about this condition; I will tell you a lot more than you doctor as your surgery has ignored me since my diagnosis. I flipped it on its head and asked how much experience they had with CRPS patients, couldn't answer it and didn't like being challenged. We all have to advocate for our own conditions and stand up against gas lighting medical professionals!
December 2023, no hospital appointments, just Christmas and trying not to put weight on, keep increasing my fitness and still not smoking, having quit on the 19th September 2023. January 2024, was the same except no Christmas, obviously; but both month's lots of conversations between the CRPS team and myself; and them with my GP surgery, who were still arguing with the experts on CRPS!
February 2024 and the appointments started up again. First up with the Occupational Therapy team for accessibility assessment, this was done by my (current) local county council, but wrote it up in the style of my (hopefully very soon to be) local county council would require it. Next, came an appointment (which is now become a regular thing with the pharmacist at my GP surgery) trying to remove me from the nerve blocking drugs and each time I have to tell no and to take it up with my Consultant Anesthetist and Pain Management at SDH.
Next up for the month on the 19th February 2024, I had a double appointment at SDH with the Clinical Psychologist and one of the physiotherapists at the Wessex Rehabilitation Centre. Both were in agreement that I was going into this with my eyes wide open; understanding the process, the highs and low parts of amputation and the rehabilitation and recovery; plus understanding that it may not cure it. Ticked off another two boxes for my Consultant Surgeon.
Finally on the 28th February 2024, I got my MRI on my back, referred by my GP! Some people hate MRIs, not me, its nap time! I got my results about three weeks later, showed nothing significant. As the call was with the pain management team at my local hospital (Queen Alexandra), I took the opportunity to discuss the lidocaine plasters; basically told I had my chances of hell freezing over than getting a prescription for them locally.
Fast forward to May 2024, I have lost over 11kgs in weight, BMI is where my surgeon wants it, fitness levels at up and even started a slow version of the C25k (couch to 5 kms) and still no smoking (well still have the odd one once in awhile). On the 10th June 2024, is when I finally get my nerve connection test (with no thanks to my GP). I am having it at SDH instead of my local hospital (as they got no referral) as both my surgeon and CPRS Consultant still wanted it to be done, so my surgeon did the referral. Ten days later, I've got a double appointment at Bath with the CRPS specialist consultant and team.
On 19th July 2024, finally I get to see my Consultant Surgeon again, to discuss my amputation and the next steps.
Comentários