Dying for treatment!!

What crps look’s like! I’ve always been against showing stumpey, but to show people is to help them understand. I am not ashamed of stumpey!

Anyone with a chronic pain condition can testify that the road to successful treatment can be somewhat of a minefield, when you have more than one condition. This minefield becomes even more chaotic when Doctors can only see one condition, and deny the possibility, or sheer presence of another. Case in point – I have CRPS in my left stump. I also have this other, yet to be diagnosed issue. I saw a lovely Doctor (finally!!) Who I must say, seemed a little out of his depth, but couldn’t see past the CRPS. No matter how many different ways I explained the different types of pain I’m in, he just kept going back to the CRPS. Frustration doesn’t cover how I felt! On the day, I had my wife with me; and my Blesma representative (amazing veterans amputee charity) wrote a detailed email prior to my appointment, explaining the circumstances. Yet with two advocates, he still seemed to be blinkered to the possibility of something else. I started to feel like an orange ribbon, like the emblem of CRPS charities, and that’s all people see. The prosthetists, the physio, and now the 1st Doctor I’ve seen face to face (other than my GP, who is amazing!).

Symptoms of CRPS.

I am a registered nurse, and throughout my career I have been used to the medical terminology used, and how things work within the NHS, and am yet to receive any tests, or treatments, or interventions of any kind. Instead, I’ve been passed from pillar to post, around the roundabout and house’s, getting nowhere! Meanwhile, the pain and effects of pain, are taking away the enjoyable parts of my life. So I can’t help but worry what happens to those who don’t have an advocate, or a realisation of what should be happening? It’s not easy to speak up, and describe your own condition when your Doctor is telling you that what you are saying is rubbish! When they can’t see past your ‘other’ condition; or are simply out of their depth. How many people out there are desperate? Desperate for treatment? Desperate for someone to listen; really listen to them, so they can have their pain investigated and have a chance of a meaningful life. I have been a nurse for 14 years and have had the privilege of working with some magnificent Doctors and specialists, but I know first hand that anyone can slip through the cracks, or be ignored, or even not believed! This, despite the mantra which all us care givers are taught to abide – “pain is what the patient says it is”. Not all health professionals remember this! Instead we often get labeled as ‘junkies who are just after medication’, or they sometimes go to the other end of the spectrum by medicating, and medicating some more; chucking a plaster over it, instead of diagnosing it!

How many people with pain conditions have reached the point of absolute frustration? If a person is telling their care giver that they are in pain, isn’t it their duty to investigate why? And to treat them. If they refuse to do so, or ignore them; isn’t this pure medical negligence? When, my Mum was in agony with a variety of conditions, she said to me “If I was a dog, they would put me down”, yet we are left, suffering! These people who are responsible for leaving us with such suffering are basically condemning us to death, One way or another! When your pain is horrific and no-one will listen, or help… what else can you do? I was extremely worried and shocked when I learnt that according to a web based survey, 20% of CRPS sufferers had attempted suicide, and 46.4% reported suicidal intentions. This is shockingly 6x higher than those with depression, according to a psychiatry study. With statistics such as these, for my condition alone; can Doctors really justify their ignorance to people who are in pain? I would be lying if I said I hadn’t considered it. Especially with the pain of flare ups, and frustration of no intervention and poor treatment!

According to oatext.com, and I should imagine, anyone with a chronic pain condition – “chronic pain patients are at elevated risk of suicide”. Shouldn’t those who refuse to treat, refuse to listen, refuse to test, to diagnose, to intervene, be held accountable for their actions? Instead of leaving us to suffer? Shouldn’t they be referring us to those who do know how to treat our conditions? Those who may be interested! Isn’t that the definition of ‘proper care?’. Not condemning us to a life of suffering!

The Surgery

Photos taken before and after my surgery.

As you can tell, I finally got a new date. I was to go into hospital on the 01st of April 2019. Typical, I thaught. April fools day. Says it all really! The couple of months leading up to this date were really hard. Things took a steady decline, and I was in more pain than I could handle. So when the date finally came, it was such a relief. The plan was to go in to hospital on the 01st and have my amputation on the 04th. My surgeon wanted to get me in early so that they could get my pain under control before the surgery.

So I sat in hospital and waited, and waited, and waited, then got dressed for my block in my leg that was going to relieve my pain, but this was cancelled. So I waited some more, and before I knew it, it was the night before my amputation, and still no block. Well this was a bit disappointing. My surgeon was equally dissapointed. The pain doctor diddnt book me in for the block, like she was supposed to, so I had to be put on the emergency list. But there was always bigger emergencies than my block (which I understood).

The night before surgery was absolutely fine. I thought that I wouldnt sleep. But I had my usual amount of a few hours around pain killers. I was 1st on the list, so my wife came to the hospital first thing. We sat and waited, and waited, and waited, and then all of a sudden a friend arrived who I used to work with in theatre. She had come to take me. It was so strange. Almost all of the staff were ones who I used to work with. From the lady who collected me, the scrub nurse, my surgeon, and my anaesthetist. I was in the anaesthetic room for a while. I was really nervous about the block, but it was fine. I diddnt feel much at all. Once that was done I dont remember much. Normally I remembered the bit just before I went to sleep, but this time I diddnt. I remember waking up though.

Just after my surgery. Back on the ward.

I woke up in recovery in what I can describe as absolute agony, but with itchy toes too! (Strange considering they were no longer there). The block had worked on half of my leg, but not the other half. I was told this may happen. (I should know by now, that if there is a complication, I will probably get it!). The recovery nurse was also one of my old nursing friends. She was great. The anaesthetist came strate away and put up a morphine pump. This helped a bit, but not much. It made me sleepy. But id been living on a high dose of morphine for years leading up to this, so it was not very effective. I spent what felt like, forever in more pain than I thought possable. The doctors and anaesthetist coming in and out of my bed space. They eventually took me back to the anaesthetic room, and did another block. But this still diddnt help. I was still in alot of pain. My wife took a picture of me when I was quite bad. (As you can see below. Not my best look!). That night was just awful. Doctors were coming in as my blood pressure was really low and my heart rate high. This was mainly because of the pain and morphine. Alot of that day was spent in pain. I eventually saw a lovely anaesthetist who decided to do an epidural.

Before the surgery I was given the option of a block or epidural. I opted for a block as I felt that the risks of epidural were too high for me, with the fact that I seemed to get complications with every surgery. But after spending over 24 hours in writhing agony, I quickly changed my mind. I just wanted the pain to go. So back to the anaesthetic room I went.

Not too flatering, but this was when I was in alot of pain!

I felt the pain ease after a few minutes. I was so much happier. I still had pain, but not as much. So, this is how I spent the next 5 days. Which is the maximum amount of time that an epidural can stay in. The doctors had to keep topping up the epidural as I was still in alot of pain. But it was gradually easing. Then the day arrived for my epidural to come out. I was warned that one of the side effects was something called an epidural headaiche. I diddnt think much of it at the time, but of course, in true Lexi fashion, 12 hours after the epidural was removed my head was killing. It was unbearable. Id had migranes before, but this was far worse. I kept vomiting every time I moved. No pain medication helped. So again, I was a conundrum. Nurses and doctors kept trying their best to help, but nothing did. It did takethe focus off my leg though.

So I spent over 24 house writhing in agony, again! Then eventually a nurse put up IV paracetamol, and I was given an anti sickness injection, and The pain went. We will never know if it was this combination, or it was just time for it to end, but end it did. Oh my goodness, I was so happy. The next morning, the physio came and got me out of bed and I wheeled myself in the wheelchair they had given me, to the cafe amd back. I thaught Id go for a coffee. But then disabled life showed me my 1st limitation. I couldnt reach the bloomin cups! So I settled for a 7up. The sense of achievement was just amazing. I was mobile again, and really happy.

Im mobile again 😁

From then to now!

I wanted to document my journey from before my amputation, when my life changed forever, to my decision to complete my Wheely big challenge.

Before all the surgery started and the pain followed, over 6 years ago, I was quite active and fit. I used to run (alot) and cycle, swim and climb, lift weights and play tennis. Id pretty much try most sports, and loved all of them. Then one day after a long run my left foot started to hurt. At this time my day job was as a Theatre Nurse at an Orthopaedic Surgery day surgery hospital. I asked one of the surgeons to look at my feet. He said I had hammer toes, and would require surgery to sort them out. I had seen this surgery alot, and scrubbed for it many times. Although it was quite brutal (orthopaedic surgery is. Its the carpentry of the medical world). So I saw my GP, who refered me to an Orthopaedic doctor. He took Xrays and said that 4 of my toes on both feet needed surgery. He opted to start on my left foot, as it was the worst one. He said that I could either wait for surgery, or have it done now. He advised that it would be better to do it sooner than later, as I was young and fit, and would heel well. He said I should be back to running within 3 months. So I had the surgery. It took considerably longer than the 45 minute surgeries that I had been part of. Mine took about 3 hours. I was told this was because my foot was hard to dissect.

So I went home that day, and felt fine. I had a block in my foot to make it numb for a few days. When the block ran out I was in quite alot of pain, but managed to handle it ok. It wasnt until about week 12 that I started to think that something was not quite right. My woulds healed fine, and the bones fused, but I was still in alot of pain. As the Nurse put it, a disproportionate level of pain to the stage of healing which I was at. So I started to think I must be a complete wimp. Others were walking without crutches by now, and I was still completely dependant on them. I remember at about 14 weeks, taking a trip to Sainsburys, and whilst crutching my way around, I saw one of the Orthopaedic Nurses who was involved with my surgery. He hollared across the shop, “you should be off those by now”. Well, this made me feel terrable. I started to think that the pain must all be in my head, and that I had to get off my crutches.

At this point I was still on alot of pain killers and could not reduce them, if I wanted to sleep!. So I stayed on them. I could not reduce them. I started trying to get used to pain, and trying to walk without my crutches. After 8 months I had no choice but to go back to work as a Nurse. Pay had run out and we were facing living in a cardboard box if I diddnt. So I went back, but has to reduce my hours from full time, to 22 hours a week. A huge pay cut, but better than no pay at all.

Work was hard. Alot of walking, and although the Nursing profession is supposed to be a caring one, after being off for the whole of summer, I found that there was not much compassion at all, and alot of comments like “enjoyed your summer off did you? “, “it’s alright for some, being off all summer!”. This made life for me quite difficult. I had always been a very competant Nurse. I had alot of experiance in scrubbing for very complex surgeries, and so when my training and development was halted (“because id had surgery, and been off for so long”). This was a little hard to take. Especially as my foot was getting worse. I diddnt tell anyone. I was hoping it would just start getting better. But it diddnt.

So after being back at work for a couple of months I requested to see a new Orthopaedic surgeon. I was convinved that something must have happened in the surgery, because it took so long, and that must be why I was still in pain. So I thaught that a second opinion was best. I was refered to a lovely Doctor. Not that my other one wasnt nice, because he was, but this chap made me feel very comfortable and at ease, and put my mind at rest that the pain was not in my head. He took more xrays and saw that the toes id had fused, had not fused entirely straite, and I needed the same surgery again (a revision). So I had this done. I remember waking up in alot of pain. The poor nurses in recovery struggled to get on top of it. Eventually after having most of the pain medications in the drug cupboard, and after being in hospital all day, I went home with more pain medications.

The recovery was pretty much the same as the first surgery. My foot in a large bandage. An appointment to have my stitches out. Me explaining that I was in alot of pain. More than before. Being told it would get better, and that I just had to be patient. It diddnt get better. I was off work for 10 months this time. All the while, trying to adapt myself to being in pain, and accepting that this was going to be my new life.

So after 10 months I returned to work. The same reception met me as before. I started to feel like I was being punished for being off sick. So the last thing I needed was to still be in pain and having to have more surgery. Id spend every day at work trying not to limp. I certainly would not complain.

But as before, after trying my hardest to live with the pain, it became unbearable. Alot of it was centred around 1 toe. It was migrating to the left. So I had surgery to remove the joint. This diddnt work, so I asked my doctor to remove the toe. This still didnt work, and the pain was moving to the next toe. Well, all over the foot, but I thaught it was around that toe. So I asked for that one to be removed too. This was done in April 2018.

This was my last Orthopaedic surgery before my leg was amputated. Needless to say, I had been off work alot, and although at this point I had been there for 7 years, people who had just started and been there for 6 months, made more career progression than I was aloud. So life was pretty rubbish.

Im hospital 3 days to amputation

I was fed up with being in pain. Fed up of not being able to run. Fed up of my life taking a path that I had not planned for. So I decided that I wanted my foot off. This was causing all of my pain. I was living on maximum pain killers. Not sleeping. Could not walk at all, and I was getting to the point of being totally dependant on being wheelchair bound. I could not have my foot dangling at all as it was too painful. I was asked alot what the pain was like. Id simply say ” have you ever stubbed your toe, and remember that gut wrenching pain that makes you want to throw up?”. Well it was like that, all of the time.

The stages of my foot decline 😁