10 Yr Anniversary // Wrist Fusion

Hi peeps,

So it’s been ten years since I had my wrist fused and the journey has certainly not been easy or pretty from the word go!! I’m going to share with you the story of what I have been through from before the surgery and the time since. I can’t remember certain things but I can remember most of it all. 

Growing up; I was used to getting injuries, different pains, and various dislocations so at first, I just thought it was another thing like usual when I started getting pain in my left hand. It caused a bit of pain when I moved my little finger but it wasn’t dislocated or broken. I preservered with it for a bit before I decided to get it checked out. Some time later; I was referred to a local orthopaedic surgeon who I had seen many times over the years so he knew me. As usual, he had X-rays done and said ‘I’m referring you to Wrightington Hospital. I don’t want to perform surgery on you with you having EDS, but they’re more specialist than I am.’ So I agreed. 

This was about seven months before I had the surgery. The pink splint is what they had made for me. Apart from my little finger, I had reasonable use and movement in the hand/fingers. 

Anyway I received my letter from the surgeon at WH and it was the same person who I had previously seen about my knees and elbows. He actually told me that he wouldn’t operate on me as he wouldn’t know whether it would make things better or not so he had special splints made for me by their hand therapy team instead of the surgical route. I liked him and I was much younger so I think that made a difference in how he was with me. I have since learned that he is now a professor. 

It was the day when my appointment came and we (me and my parents) travelled down to WH to attend it. There we met with the consultant and after looking at both my hand and X-rays, he said he wanted to operate on it. There he told me that although the wrist would be fused, the rest of my hand I would be able to move and use it. Anyway he booked for it to happen. I wasn’t too certain and I felt confused tbh. Had he forgotten what he told me in a previous appointment? It felt like he had. While we were there, they had me fitted for a special splint to wear. I wore this for a while.?

A few months later, we traveled back to the hospital on the Tuesday; ready for the surgery the following morning. I didn’t sleep too well as I was too busy worrying and I felt really scared. So the next morning, the nurses prepared me ready for the surgery. The doctor came and chatted to me. It was a different one, a younger one. He was nice and polite. He talked to me in thinking that he didn’t think my hand would take the fusion so he would just open it up and see what’s what. My hands and wrists are very small, my bone density is low and I have low muscle tone which is why he said about how he didn’t think it would work properly on me. Afterwards the anaesthetic lady came to see me and was surprised that she hasn’t seen me before in the pre-op assessment clinic. The clinic had said that I didn’t need to go through for one even though we were a bit ‘erm okay, if you’re sure...’ so I only had the very basic checks at my gp surgery. The lady really looked at me thoroughly, focusing on my heart and spine. (If you are new to me and my blog, I have a severe form of kyphoscoliosis and had a heart murmur when I was born. I also have asthma). She flatly refused to let the operation go ahead until she knows I have the required tests plus more first. I understood even though I felt annoyed and let down. For weeks I had been building myself up for this surgery and dealing with anxiety issues. I had been planning my time off from college as well. My parents and I weren’t happy that we have gone this far for them to not have fully prepared beforehand. This was definitely not up to the level of care and duty with careful planning like we had been used to at both FGH and RMCH. 

We traveled back a few weeks later for the pre-op assessment and the same anaesthetic lady did all her tests on me. She said she wanted to take as many precautions as possible and wasn’t happy at what had happened. The surgery was looming and it was feeling more real than it even did before. I spent the next few weeks worrying, not sleeping and being anxious in case something bad happened. I had gone back to college and again they prepared for the time I would be absent. They spent many times trying to reassure me that I would be okay as they had seen how it was affecting me with the worry. 

Again like previously; we traveled through on the Tuesday evening. We had met with another anaesthetist lady and she went through the form. I asked her if it would be okay if both my parents were okay to come into the anaesthetic room as I was too nervous to which she replied ‘yes that’ll be okay’. Pretty much like the time before, I spent the night tossing and turning in bed; feeling more anxious. 

They got me up and prepped, again the same routine happened, except it wasn’t the consultant again and it was another doctor, so that didn’t sit well. They told us my consultant had Delhi belly which I thought ‘well where was he last time as well and surely as my case is a little more complicated, that he should be there?!’  They said they would put a lower limb block on me to which I didn’t know what he meant so I just said okay to him. The time came when it was my turn to go to theatre... they suddenly refused my dad to come with us so I wasn’t comfortable and I had this terrible feeling in my gut that this wasn’t a good idea. The lady tried to get my hand to put the needle in but I kept moving it away and saying no but my weak muscles proved too easy for her. 

So the time was now about 1pm and I had been in theatre since about 9:30am. Apparently it has took much longer than expected. As soon as I got back to the ward; the amount of pain I was in was unreal. I had never felt anything like it. I couldn’t see my hand as it was in a lot of dressings and they placed my arm in an hanging sling thing. The pain was too unbearable so my parents had to get the nurse to give me some pain relief. They kept trying to force a Tramadol tablet down my throat which they were getting frustrated at; even though it said in my notes that I am unable to swallow tablets. Anyway after my parents reminding them this; they get me some liquid pain relief after having to go to other wards to get it. No matter how many times they kept trying to make me comfortable, there was just no way to find a position for me that I could cope with. It makes it very hard when you can’t sit straight or properly because of the curved spine.

Eventually my parents had to leave and go to the house place that was next to the hospital for relatives to stay. It was quite late. The ward was quite lively considering it was a hospital ward, some of the fellow patients and nurses were all stood outside the fire door having a smoke which half amused me but half made me think ‘hmm that’s very professional, not lol!’ I didn’t sleep much to say the least. Constantly having pain relief through the night to get me through.

The next morning, a therapist came to access me hand and was quite shocked. She got the nurses to come and have a look at it. They nicknamed my fingers ‘chipolate sausages’ so it was good I couldn’t see it properly. The therapist tried to move my fingers but there was no chance. The swelling was just too much and they weren’t a good colour either. She said that we couldn’t do any of the exercises as the swelling was too much and the fingers just could not move. Normally after a wrist fusion, you have to do special exercises to get them working again but this was not possible. Not long after, the doctor who did the surgery made his appearance and checked it over. He was surprised to see how bad it looked. It was the worst he had seen. He told me that my bones were a mess. I asked him if he knew what the chances of my other hand going like it and said it was a possibility which I thought 😕 wish I had never asked to be honest! He also said that the limb block can’t have worked on me. I wasn’t happy; they said to me that it would be completely numb. There wasn’t much else said from him and he made his exit. The therapist came back to put more dressings on it. 

I couldn’t wait for my parents to come back as I felt the worst I had ever felt. I cried when they came and they did their best to console me. My appetite had gone, I felt too queasy and yucky. That’s how you know I was in so much pain when it makes your tummy churn! The next few days were a little hazy as it consisted of pain, lack of sleep and lack of food. 

It was Friday now and they were debating on whether to send me home or not as I wasn’t good. The anaesthetic lady had been concerned over the lack of eating and I remember telling her that normally after surgery, I’m starving so it was very unusual. The nurses didn’t think I was ready to leave yet either with the state of my hand. Although I had already stayed longer than other patients; they thought I’d be out later on the day after my surgery which seemed a bit quick for me with having EDS. The ward closed on a weekend so they reluctantly decided to let me go home rather than move wards where they don’t really deal with upper limbs. Despite the few hiccups, the nurses were nice and the ward was very clean. So after they discharged me, we headed home. It felt like the longest journey I had experienced and I’m a person who is used to travelling to Manchester and back! 

The next few weeks or so; it consisted of the same as it was on the ward expect my appetite had started coming back. My hand and fingers were still very swollen; the pain was still very intense. My days spent mostly of me either in bed or on the sofa with my arm propped up. I had back ache too. 

It was time for a follow up appointment at WH. The journey wasn’t great as you can imagine. They sent me for an X-ray first so we went to get this done. Then the nurse called me to change the dressing. I just remember my dad was in the room with me, not sure whether my mum had gone to the toilet. The nurse took the dressings off and proceeded to take the stitches out. This was extremely difficult and they did not want to come out. After many a time in A&E and previous surgery, I did know that it takes me longer to heal and that stitches have gone left in, and that they come out with no force when they’re ready to come out. She started pulling and as it was getting too much, I started getting upset. My dad moved to sit next to me and held my other hand. I’m surprised I didn’t break his hand with the amount of pain I was in. I asked her to stop for a moment as because I was crying so much; I was struggling to breathe properly and I needed to get my breath back to normal but she ignored me. She kept pulling and yanking at them. By this point, I was screaming in agony. Even my dad tried saying to her ‘can you just pause for a minute’ but again she ignored. I don’t know if she didn’t read my notes as it would have said that I have EDS or she was too busy doing as she was told with no regard to my wellbeing or condition. I seem to remember that she had to leave it open so that the doctor can see how it’s looking. We waited back in the waiting room while the doctor became free for us. My mum had come back at this point and seen I’d been upset. I was nervous about going in to see the doctor as I just wanted my hand left alone now. Anyway we were finally called in, and it was actually the main consultant who was there. A part of me was hoping it’d be the one who actually did the surgery seeing as he saw the state of my hand and fingers. He looked at it and tried to move my fingers to no avail. It was causing me further pain. Anyway he got looking at my file or on the computer (memory a bit hazy as the next bit shook me!) I calmly said to my dad ‘I wish I had never had the operation. I’ve had no sleep, constantly in pain, it being so swollen and that I can’t move it still and I was feeling really low’ the next minute, he turns round and says ‘well we did the best you know!’ In such a harsh, and brutal manner, that me and my dad looked at one another; shocked. For my dad to look the way he did, says it all, and my dad is very laid back but it surprised him with how I was spoken to. He showed no compassion or understanding of what I have been through, whatsoever. Again, I got upset after we left that room. In all of my years and time spent in and out of hospitals, have I ever been treat in such a cruel manner by a doctor! Shortly after, in the hand therapy department; they fitted a cast on it. Once they were finished with the casting, we went to get a drink in the restaurant before leaving to travel back home. The sooner the better in my opinion. 

My fingers and hand was still swollen weeks later and having my mum talk to the gp, who came to see me, they arranged for the district nurses to come out to me. They were worried about it and were a little annoyed at how WH didn’t seem to do anything to help us. The nurses had some special finger socks made out of elasticated fabric (the same that they use for compression) to put on them everyday to see if they could help the swelling. Nothing else was working; I constantly had my arm elevated up on cushions and had anti inflammatory medicine (to what my tummy could handle). It was agony putting them on but I persevered. I was desperate. There wasn’t a day that went by where I didn’t end up in tears due to pain and lack of sleep. My family rallied round me around the clock and they supported me. The only time that I left the house was to go to the gp surgery or WH, it was a lonely time for me. If Facebook or twitter had been around during this time, it might have made me feel less lonely and give me some sort of social interaction as I wasn’t getting any which was hard to get used to as I went to college most days. 

Again another follow up appointment at WH. To be honest I don’t really remember this was so much, just that the hand therapist definitely reiterated that there was nothing they could do for my hand as they said ‘I’ve lost the use of my tendons and it was far too late to do anything. They were surprised that my fingers were still swollen a little bit (think this was in December). The consultant wasn’t there as it was one of the registrars. 

My lovely friend who was also one of my main learning support ladies came to visit. It was so nice to see her as I was missing college and just seeing someone other than family. She brought me a bit of college work to look through which a lot went over my head. There was some bits from my other LS lady too, I missed her too. Whenever I felt up to it, I just read through the notes and tried to do bits of what I understood. 

Christmas came. Some of it was a blur to me to be honest, although I did venture out for the first time since 31st October to my annual family Christmas party and NYE. It made me feel anxious being out and surrounded by lots of people. I tried my best to enjoy myself but I just didn’t feel right in myself. 

This was taken over the Christmas/NYE period, about two months after the surgery. I always smile through the pain, I was trying so hard to not let the pain stop me. This was the cast they placed on me at WH. You can also see that my fingers had already bent under because of the tendons. 

By now my fingers had finally looking more like my fingers with the swelling going down but they were still extremely tender. It was January and I was preparing for starting back at college. I remember being excited at seeing everyone again but for some reason, I felt really apprehensive. We waited until after the January exams had finished so it was the end of the month by the time I started back. The staff did their best to help me settle back into college life and I thank their patience. I struggled. They set me up to see the college counsellor and every week we met up to chat about things. My self esteem wasn’t what it was and I felt so down. 

My gp was worried about me so she got me to fill out a questionnaire thing because I had told her how everything was making me feel, the pain I was still in and the disappointment I felt, I was crying so much that I didn’t always know why, anyway; she diagnosed me with depression and set about to help me. She understood what had happened with the whole surgery situation and the effect it was having on me. 

Some time later, me and my dad travelled back to WH to see the senior hand therapist lady who was in charge about looking into what can be done with my hand. She specifically arranged with the consultant’s secretary for me to see him in clinic as I had only seen him once when we had that upsetting appointment. Every time we had gone, it was always one of his registers (or whatever you call them) and they never had any answers. They pretty much dismissed it. While she was talking on the phone to his secretary, I noticed on one of the shelves a big folder with Ehlers-Danlos Syndrome and I quietly felt suspicious (probably the best way to explain my thoughts) I asked her if they dealt with other EDS patients and she sternly said ‘yes’. I thought well maybe if you had, then the way I’ve been treat might have been a bit more empathic and understanding. They might have been a bit more aware of what’s happened to me happening in the first place. She looked at my hand while we were there and told me that my knuckles had dislocated which will have been because of the tendons losing their range of motion and the extreme swelling. She reassured us that it will be the consultant we’ll be seeing as she’s put special measures in making sure he will be there. 

It was the day for us to travel to see the consultant. I jokingly said to my dad ‘what’s the bet that he isn’t there but surely he will be as it’s been made specifically for us to see him?!’ We waited in the clinic for our turn to be called in. Eventually we got called in and shown to one of the little rooms to wait for him to come in. Anyway, a nurse and a doctor came in, he introduced himself (can’t remember his name as we’ve seen so many there) and I said ‘where’s ...?’ The nurse said oh he’s had to rush off to leave the hospital. I quietly growled to myself, thinking ‘wow what another wasted journey!’ The doctor examined my hand and said ‘best to come back again’. We weren’t in the room long and we headed to the restaurant for some dinner. Guess who was in the queue in front of us by a few people in between... yep you guessed it. Me and my dad exchanged looks... I could feel myself getting upset and annoyed. I thought what a load of rubbish that nurse said, it can’t have been that urgent when he was happily getting his hot dinner. I suddenly decided that I will try and get his attention whilst waiting in the queue but he ignored me. He obviously went to his office to have his dinner. It would have only took not even ten minutes for him to have seen us especially when we had arranged specifically to see him and traveling all this way. 

A few days later we had spoken to the lady from WH about what happened at the appointment so she’s managed to reschedule another date for us. 

So we made our final visit to WH as I needed to see what they could do about my hand once and for all, we were expecting to see the consultant for sure this time. Again we were called into a little room and waited. Typical. The consultant wasn’t there. Instead was a pleasant registrar, he examined me like they do. He read my notes and the state of my hand, and looked at me saying ‘I’m not quite sure what we could do, apart from cutting it open. I understand that you’ve been through a lot and that you may not want to do anything surgically, with what you have already been through.’ I nodded in agreement, I didn’t want or trust anyone to operate on it again especially if it won’t make it any better. I couldn't emotionally handle doing through it all again. He shook my hand and he left. He was actually the first and only doctor to acknowledge the distress and ordeal that I’ve endured. To me though, it was too late and I wish the consultant could show the same compassion and awareness that he did because it was unprofessional and uncalled for. 

There are lots of questions that I have that will continue to plague my mind that will probably never be answered. The lack of compassion and empathy will remain with me and effect me especially as I face future health issues because I have never experienced the ordeal that I have at this hospital, anywhere else. I wish I knew more about what could happen from trauma and surgery where Ehlers-Danlos Syndrome and my associated conditions are involved. I know more now than I did back then, but I wish they would have made sure they were aware of all repercussions from this intricate and intrusive surgery and not go back on what they had previously said in appointments before this happened. I would like the consultants (and nurses) at WH to show more compassion, empathy and awareness with every patient, I do feel like because they have so many patients that do become immune to each individuals’ needs, whether that’s physically or emotionally. I hope that by me sharing my story can raise awareness and encourage other patients to be strong in advocating their needs and worries. Don’t be afraid to ask questions and challenge if you need to... this is something I take very seriously now. I strongly advice you to listen to your gut instinct too. I hope that none of you will experience what I have been through because it will affect you for the rest of your life like it has for me. Even to this day; ten years on, I struggle with pain and I have to adapt how I do things which isn’t easy when you have EDS, Osteoporosis and Osteoarthritis (in my right shoulder blade) to endure. It gets frustrated where I can’t even lift my hand because the effect of surgery. As someone who likes to have her nails done all nice and pretty, it is definitely a challenge trying to do my left hand. This is just an example of the frustration and distress that I’m talking about. 

This is me and my not so beloved hand, today, ten years on. 

I am sorry that this is such a long post but everything I have written is my experience and the truth from how I saw and how I have felt. Thank you so much for reading this. I would love to hear your stories especially if you have been to WH. Am I alone or have you had a bad experience with there too? Please take care, enjoy Halloween and hope to see you in my next blog post. 😘❤️xxx