What on earth is that!?!?!?!?! An arteriovenous (AV) fistula is a connection between an artery and a vein. This should not occur naturally in the body. It should go artery - capillaries - vein. But I seem to have this connection half way down my calf and is likely the cause of my leg pain that I've had for years now.
At the end of March 2019 you may remember I had gone to hospital to have a very simple operation on my leg but just as they were doing preliminary checks they found that I had this connection and had to reconsider the operation. Read the full blog on that here. After this discovery was made a new action plan was put into place.
In August 2019, I travelled up to Christchurch from Queenstown to have the fistula repair operation. Thankfully my good friend Tara lives in the city and had agreed to look after me for a couple of days around the operation, not that I should really need much help during recovery as it's a simple day surgery.
I wasn't feeling at all anxious about having an operation as I was distracted by having a little holiday to Christchurch, and also excited about the thought of running pain free again. This was until I went into the operating theatre all by myself and I suddenly realised how scary it is trusting someone to put equipment into my leg!
As I was only mildly sedated, I was able to speak to the surgeon all the way through the operation and watch what happened. It should have been complete within an hour but he struggled to get the catheter down the artery and kept having to inject more of a relaxant into the vessel to open it up. After a couple of hours the job was done and a coil had been placed in the AV fistula to close the connection, and allow my blood to travel where it is supposed to.
I was left to recover in the hospital room with other patients that were mostly middle aged men having had some form of cardiac operation. As I hadn't been put under general anaesthetic I wasn't too delirious but I was pretty drowsy so had a sleep for an hour or so. Once I was fully with it again I seemed to be in more pain than all the other patients.
The pain was all around the area near my groin where the catheter had been inserted into my artery to go down to the fistula. The opening had been closed up with a plug and I imagine it was this that was causing the pain. I was told that I wasn't allowed out of bed for a couple of hours even though I really needed a pee. But once I was allowed out of bed the pain of moving was so bad that it took me a few attempts to get to the toilet. The first time I felt so faint and dizzy I had to lay back down before leaving the bedside and thought I might vomit.
After recovering enough and eating some dainty sandwiches, I was allowed to be collected by Tara. I still didn't feel like I could fully stand up straight due to the pain around my groin so I had to be pushed out of the hospital in a wheel chair. Before being discharged Tara was given instructions verbally and in writing about what to do in the occurrence of the artery wound opening up. But of course this won't happen they said!!
Back at Tara's house we filled our faces with Thai take away and I daren't move my hand from the plug all evening. After an exhausting day I wanted an early night. As I shuffled my way towards the bedroom I joked to Tara that if she hears me shout her name in the next five minutes then the artery has probably exploded.
I sat on the edge of the bed and tried to find the best way to move from sitting to laying. A simple motion that we do daily and never even contemplate. As I lay back, I felt more pain in my groin than I had all day. I was told that if the artery did open up it could either bleed outside of my body in which case blood would be squirting at the ceiling, or it could bleed internally and I'd feel a lump develop by the insertion site.
As I'd switched the light off on the other side of the bedroom I couldn't see if anything was happening. I couldn't feel any liquid so I assumed there was no blood spurting out. Equally, I couldn't feel a lump so I assumed it must just be the expected level of pain and I should try to sleep.
As I tried to sleep I couldn't get over how much it hurt. I tried to focus my thoughts on anything else but the pain was overpowering. I kept touching the wound to see if anything was changing. It was. There was a lump. "Tara!" I shouted. She ran to the room and switched on the light. There it was, a small lump beside the dressing of the wound which was rapidly growing in size.
We both looked at each other and realised we couldn't remember what the instructions were. Was it press on the lump or press above the lump? Tara got out the written instructions and after reading them we still weren't sure. By the time we had figured out the instructions for internal bleeding care, the lump was the size of a tennis ball. She found my pulse above it and pushed there.
Tara calmly called the emergency services and requested an ambulance. Even though Tara lives two minutes from the hospital it took the best part of an hour for the paramedics to arrive. During that time we had gotten over the shock and were finding it pretty hilarious that she was pushing on a giant lump in my crotch while I lay in bed wearing Minion pyjamas.
When the paramedics arrived they were pretty baffled by the whole situation and we all laughed more (even though each time I laughed I thought my wound would rip open). My surgeon had given me his phone number so we called him and he advised that I should go to A & E.
Unfortunately I wasn't the only one there. I ended up being there until 03:30 just being monitored to make sure I wasn't losing too much blood inside. As it didn't appear too disastrous I was sent home and asked to return first thing in the morning to be fixed up again.
Interestingly, the surgeon that did the operation happened to be working in the public hospital the next day so I didn't need to explain the whole story again. He was very quick to scan the area and glue up the hole. After this, he wrapped me up so tight in dressing that there was no chance of anything popping open again. Or much chance of me walking either!
During this time in A & E, I'd missed my flight back to Queenstown and had to rearrange it. I was so tired I just wanted to sleep but couldn't physically lay down anyway. At the airport I was pushed around in a wheelchair again as walking wasn't possible for more than a few steps. Finally, I got home to Queenstown and spent the next seven days pretty much glued to the sofa, eating chocolate and snuggling cats!
What an adventure!!
Over the passed year or so, I've seen so many medical professionals and had so many misdiagnoses that I take everything with a pinch of salt. I returned to the UK from New Zealand (back in February) specifically for an appointment with a vascular specialist. If you have read my previous blog you will know that I took steps ahead of this and paid to see one in NZ as I was so worried about flying. Anyway, at the hospital in the UK, I explained all of my symptoms and told the very long story of my leg condition.
After lots of information being given and various scans being looked at the consultant said my problem is definitely not vascular, he 100% believes it isn't vascular and must be musculoskeletal. WTF!!!! He even said his leg would hurt too if he sat on a plane for a long time! Seriously! Well, I've kinda got used to basically being told there isn't anything wrong with me. He can keep his opinion. I'm going back to NZ where I've found a doctor that listens and knows what he's on about!
My last blog was a brief update on the past three months, if you haven't read it but want to click here. There was so much to tell you about that I didn't want to add in the most recent (and possibly most important) news.
I ended my last post explaining how I don't believe that my leg pain is coming from my spine. I'm pretty sure that the doctor who's told me this doesn't believe it either but I'm taking lots of nerve pain medication to disprove this theory.
* * * * *
Anyway, after flying out to New Zealand I was in a lot more pain with my leg. The night after the flight I had pain all the way up the inside of my thigh to my groin. The pain was so bad it kept me awake and I had to take painkillers just to be able to sleep.
I know it's half way through February and I haven't got round to writing any blog posts yet in 2019! Yikes, what a terrible person I am!! Well, hopefully when you read this you'll have some understanding as to why.
In December last year, I saw Dr Rogers who suspected I have a problem in my spine that is referring pain down my leg. This sounded like it could have been a good explanation to my struggles.
Being in the UK and treated by the NHS for the last seven months, I've figured out ways to get seen quicker. It's basically a case of pestering people on the phone. On December 18th I was referred for a lumbar spine MRI scan. On the 19th I began calling the hospital, and on the 20th I got a cancellation and had the scan.
Waiting for the results would be the next challenge as Christmas and New Year would slow down the process. And then, getting an appointment to see a doctor that is very high in demand will be an even tougher challenge.
Since I last wrote a blog I've had more needles in my legs yet again. I had two types of nerve conduction tests done on my legs and again nothing was found. Yet I'm still in pain.
I constantly go in and out of thinking it's in my head and then being positive it's not.
Over the past year and a half I've been told to reduce my activity level more and more to the point where now I'm super sedentary. I've changed my daily routine completely and now spend most of my time sitting (this is not how I have ever lived my life). Unfortunately, my symptoms are now getting worse with the more sitting I do. I feel like whatever I do I'm not getting better. I always follow the advice of the professionals but it makes no difference.
I'm starting to feel like I have no escape. I've recently got to the point where I just want a break from everything. I want a break from the worry. I want a break from the mental turmoil of not knowing what's wrong with my body. I want a break from the pain. But I can't have it. Whatever I do I can't escape it and I'm exhausted.
On Friday I went into hospital to have the pressure tested in my legs to see if I have chronic exertional compartment syndrome. It has been a year and a half, almost to the date, since the onset of this leg pain. I have had so many tests that it's starting to get quite ridiculous now. The symptoms I'm suffering with pretty much match up exactly to compartment syndrome.
The test involves having long needles pushed into each of the four compartments in each leg to test the pressure inside. You then head off to do some exercise, when you return the tests are done again to see if there is an increase in pressure.
The test if often done by itself and then you would be referred for surgery at a later date. As my consultant was doing the tests in theatre in the hospital, he booked out the surgery in case the results were high.
I feel like I've been waiting forever for the results to come through from my latest MRI and bone scans. The wait is over and I have finally seen my consultant. I knew the results would be negative and I wasn't wrong. I've known all along that I don't have a bone problem. I think, as an athlete, you know your body enough to know the difference between feelings of soft tissue or bone.
My whole life has been built around being outdoors and being physically active. Over the past year and a half, the pain in my lower legs has slowly increased and the level of activity I can complete pain free has drastically reduced. I have become a shadow of the person I used to be. I used to jump around and be full of life. I used to smile all the time. I didn’t realise how much I relied on exercise and adventure for my mental health. Now I spend a large portion of my time crying and I take antidepressants to get me through each day.
The last time I wrote a blog was three months ago. I haven’t written since then as I haven’t been coping very well and sharing my life with anyone other than my very closest friends and family hasn’t been a priority. I’ve probably had the worst six months of my life so far.
After having two months off running when diagnosed with a stress reaction, my leg still hurt to walk but I began the back to running program as I was told I’d probably left it too long.
This was back in May when I also returned to the UK. Two weeks into the back to running program and the pain was getting worse. I persisted thinking it may be due to my legs doing no exercise for so long. Over the next month it got to the point where I was in excruciating pain within two minutes of running. I went to the doctors but was back to square one even after having seven months of treatment in New Zealand.
I'm 34 years old. I've been running for 22 years. In that time, there's been two occasions where I've had bone problems. During both of those times I've been taking a progestin only contraceptive.
I want to share this with you not to spread fear but just to make you aware and prevent you from being in the same situation as me.
As someone that trains hard to maintain or improve their fitness and performance, injury is pretty much my worst nightmare. Nobody trains hard to have it all thrown away.
Receiving the news that you must stop training for whatever sport you love is heartbreaking. If you are anything like me you probably won't hear much else from the doctor giving you that news as the emotion takes over your concentration.
You too are probably hooked to the endorphins released from pushing yourself in sport but don't worry, you can get through this. Here are my top tips for maintaining sanity whilst recovering from injury...