20 days and counting …

As you may have gathered, I’m still in hospital! I mistakenly thought I’d be in and out within 5 days. I was pre-warned that it could take a couple of weeks, or possibly longer, but I thought, I’m tough, I’ve been through lots already, I have a very high tolerance to pain… None of those things make any difference to any hospital stay. It is impossible to predict how you will recover, or how long it will take. I can say, that previous to this experience, I was certain that I had reached the very hight of my pain level. That pain couldn’t possibly be worse that CRPS flares with neuromas… I was wrong. CRPS flares, with surgery is far worse. I was warned, so it wasn’t lime I went into this not knowing that things would be tough. But usual me… I shrugged it off, and thought to myself ‘oh well, what’s a little more pain?’ Well, I can tell you… a lot!!! I’m feeling battered, bruised, sore, sick, tired, and missing my babies. All that said, however, things are steadily improving, and the care and treatment I have received here at the QVH hospital in East Grinstead has been just incredible. All of the staff are just to kind, and caring. They have been there for me through night and day. I know you must be thinking, well thats what is supposed to happen in hospital, well let me say… it doesn’t always happen. After being a Nirse myself for 14 years, I’ve seen a substantial lack in compassion within the field. Yet here, they all have oodles of it. They are warm, and friendly. They make me cups of tea in the night when I’m awake in pain. My surgeon Tania Cubison, the genius, always comes by every morning to check on me. The pain nurses have been in every day, trying everything they can to see me through the tough times. The anaesthetists have been to see me every morning and evening to administer boluses into the nerve catheter in my leg. I am honestly, truly amazed.

Battered and bruised!!

So, we have lowered my intravenous pain medications now, and are lowering the local anaesthetic meds going into the nerve catheter in my leg. The pain is rather bad a couple of times a day, which is when the anaesthetists step in. But we’re making improvements in that respect as well. The plan is that the nerve catheter needs to come out by the weekend, as its been in too long by that stage, and could increase risk of infection, which I definitely do not need. So watch this space. Hopefully I will be home by early next week, if not sooner 🤞

Pin cushion!! 🤣

It’s a Neuroma!!!

Finally, after two years of saying that I have pain, other than my crps in my stump, I finally had an MRI. The results showed a neuroma and a second area of thickening around my stump. Finally, after being rebuffed, ignored, made to feel awful… I was right. So, I recieved a call from Bristol to tell me the news. They said that there was a few treatments, but we’re still reluctant to do surgery or even touch it because of the CRPS! This is despite the fact that it would seem that the Neuroma(s) are setting of my CRPS. People are so focused on not setting off the crps, that they are prioritising it over long term treatment, basically confiding me to my wheelchair for life! Luckily for me, I had my appointment in East Grinstead, and the amazing team there see things differently. They believe in treatment, with the realisation that my crps may get worse, but they inform and let me decide.

During my visit, I had an ultrasound, which was thoroughly explained, and had the consultant present. I then saw my consultant, Dr Tania Cubison. She was amazing. She explained everything. I saw videos, photos, and was told the actual facts and statistics of probability of recovery. I felt fully informed, which I have to say, I’ve never had before. I don’t know if it’s because I’m a nurse, or weather others have had such treatment, but at my local hospital, I’ve never had as good a treatment as I did at East Grinstead. After I saw my Dr, I then saw a anaesthetist, who was again very thorough, and explained everything. Now this is a big thing for me, as when I went in for my amputation, I was taken into hospital 4 days before the surgery to have a block by the pain Dr, who didn’t show up to do it! As a possible consequence of this, my CRPS came back! The anaesthetist resured me that he will show up, and couldn’t believe that someone, or a service would be so unprofessional. He plans to put in a block the day before the surgery, and then they will place two other blocks when I’m unconscious. He stressed the importance of doing this so that they can ensure it works, and doing it right before having surgery, doesn’t give you a gauge of weather it is placed correctly, which is what happened to me!

Above is a picture of a neuroma.

So then I was off to see a pre op nurse. They were also very nice, and seemed quite knowledgeable. The were very thorough. I have never had bloods taken before in a pre op assessment either. I have also never been made to feel so welcome. I have to say, I am very glad I will be going there for my surgery. The thought of going to the Roayl Devon and Exeter again, where they’ve ignored me, treated me like a sub human, and neglected me, wasn’t very favourable. So this should be happening in August, we think. The plan is to do TMR surgery on three of my nerves. There will be an approximately 8-10 inch scar on the back of my leg. I have been told to expect a hospital stay of 3 days to 2 weeks, and their goal is to ensure my pain is under control before they kick me out. Another refreshing change…

We have a plan… I couldn’t be more relieved, and grateful to my friend Maggie, who without her referring me to this amazing specialist Doctor, I would not be in this fortunate position. It is amazing that I’ve had to go so far away, just to be taken seriously, and to have treatment. It angers me, as I’ve worked at the RD&E for almost half of my life, including doing my nurse training there. I’ve been a registered nurse there for 14 years. Yet I received such diabolical neglect, that they were just going to leave me in pain for the rest of my life. I still have not received an appointment with the pain team, despite 2 years of urgent referrals being sent. This is how poor the treatment has been for me… having none! Anyone with a Neuroma will tell you, it is excruciating, as is CRPS, and one sets off the other.

All I can do now, is wait for the date. I couldn’t be happier with East Grinstead. Just wonderful.