People often ask me how my recovery is going. I find it really hard to respond well to this question. I am still struggling with my leg. My left leg still doesn't function how it should and causes me pain if I do too much. I've had a multitude of diagnoses over the last few years but I still haven't got to the bottom of it. So, in answer to the question, I can't recover until I've got the diagnosis and addressed it. I know that people ask because they care and want the best for me so that's why it's a hard question to answer.
After the operation I had in August (blog about that here) I really hoped my symptoms would disappear, I'd get back to running, and life as I previously knew it. As the weeks passed the discomfort slowly returned as I went back to normal life and exercise. To say I was upset by this would be a huge understatement.
I had stopped taking anti-depressants when I thought I had a solid diagnosis and the future looked bright. As I found myself right back to square one, with no diagnosis, my mental health deteriorated. I had lots of other personal issues going on in my life too and I found it really hard to cope. I sought out some of the best practitioners possible to help find out what was going on with my leg. I was advised to do no exercise until we found the problem. This only exacerbated my mental challenges and I felt the best option was to begin taking medication again.
For the next few months, on a weekly basis, I was working with a podiatrist, chiropractor and personal trainer. Together they tried to figure out what might be going on. This cost me a lot of money and unfortunately resulted in no change.
Through the whole process over the years, I hadn't seen an osteopath and this kept getting recommended to me. Randomly, I had just taught an osteo and her staff to rock-climb at work, and as a thank you I'd been offered a free consultation. This seemed far too coincidental to me, and an opportunity not to be missed. I got an appointment as soon as I could and got her opinion.
After looking at me standing and moving, she had a good prod and poke around my body. Her thoughts were that it's likely to be vascular. She noticed that my pulse was weaker at my ankle than it was higher up my leg. The two main thoughts that I receive from people are that it's either vascular or nerve related. What I loved about her process was that she said it's best we find out what's going on inside instead of treating the symptoms (which is what many people have been doing without necessarily knowing why). So she referred me for a doppler ultrasound scan (stress test).
Whilst at work one day, I received a phone call from my surgeon who said that he had been speaking to another vascular specialist about my case. He mentioned that there was a condition called Endofibrosis. It's typically a cyclists problem but can occur in runners. I researched the symptoms and it did sound very similar to my struggles. Luckily, the test for this is the stress test I had been referred for.
Whilst seeing the podiatrist some time ago I had been referred to see another Sports Medicine Doctor in Wanaka. The first time I met with her she examined me and thought that the problem was coming from my spine. A similar diagnosis to one from the UK. She wanted me to have a lumbar spine MRI but it would cost lots of money. I mentioned that I had one done in the UK a year and a half before and she requested I get that sent over.
I would have expected scans to be emailed between countries these days but apparently not. I had to get my mum (in the UK) to phone the hospital and request a document to be sent to me in New Zealand. I had to fill that in and post it by snail mail back to them. They said it could take up to a month to find my file and then they would put it on a CD and post it to me. Anyway, I'll cut a long story short, I managed to get the file.
In the meantime, I had an x-ray on my spine and pelvis which showed some abnormalities but nothing that would cause my pain. Went to Dunedin to have a bone density scan done of the whole lower half of my body from the boobs down. Again, this showed a few areas of damage but nothing to cause the leg pain. Apparently my toes have taken quite a battering over the years!! And I got the referral through for the doppler ultrasound stress test.
In early March I went up to Christchurch for the stress test. This involved having your blood pressure tested pre and post exercise, so I had to take my bike and indoor trainer with me to exercise in the lab. The results from this were given straight away but, annoyingly, they were inconclusive. Some parts of the results look like I could have Endofibrosis and some don't. So I was referred for a CT Angiogram to look in more details at my arteries.
I have some preliminary results from this scan and it looks like my arteries are fine. I am still waiting for further reading of the scan but I don't expect much to come from this.
So where does this leave me at the moment? Everything is still the same symptom wise. I have to be careful I don't do too much activity as my symptoms are worse the more I do. But with lockdown it's not likely I'm going to do too much. I am just waiting for more opinions and also hopefully being referred for a pelvic MRI.
The silver lining with everything I've been through regarding my leg is that I've become very resilient. I find coping with situations like the lockdown far easier than I would have a few years ago. I've learned to be at peace with myself and to be calm when an obstacle is put in my way.
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.
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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.