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!
So, I only went back to the UK for that appointment which I was expecting to be far more productive, and to pack up my stuff and say goodbye to family and friends. Four weeks later and I was heading back to Queenstown, this time for good.
I flew in to Christchurch as I had an appointment for a procedure on my leg there a couple of days after landing. If you aren't up to date on the prognosis with my leg check out the previous blog.
In this procedure, Sclerotherapy, they were planning on killing off some veins that are growing in the wrong place. This would be the correct plan of action if my issue was purely vein related not any other vessels.
Thankfully, the first thing they do is inject the problem vessel with a dye which is visible on this clever machine that you see in the picture below. The dye was injected into my vein, and then, as if by magic, it swooshed straight into my artery! It also went straight into a deep vein.
So that was it for any medical treatment that day! They couldn't do the sclerotherapy as the glue they planned to inject into the vein would have gone into my artery and down to my foot. It also could have caused deep vein thrombosis which is not desirable!
As the original vein diagnosis was a minor problem, this is good overall, as it means that this is way more likely to add up to being the cause of all these major problems I've had for so long. Yes, it will mean a bigger operation to fix but getting it fixed RIGHT is the most important thing.
So, what is actually going on in my leg?
As far the doctors can see there is an Arteriovenous Fistula. A connection that has formed between a vein and an artery. This is not supposed to happen. It should go Artery - Capillaries - Vein, and vice versa. The circulation in my leg is all very confused.
This is the most likely diagnosis but again, when I return for my operation they will do more testing with dye and check out exactly what's going on.
On August 19th, I will be going into hospital in Christchurch again. This time it will be a bigger operation with two surgeons present. I'm very lucky that they are the two best doctors for this specific problem that I have. I will be heavily sedated but not under general anaesthetic, so I'll be able to communicate through the whole procedure but not able to feel anything.
A catheter will enter my artery in my groin and travel all the way down to the location of the fistula which is about four inches above my ankle. Out of this will come a micro-coil. This will be placed in the fistula and my body will create a block. Voila!!! Then my vein and artery will hopefully run independently.
If this all goes to plan, I should be out of hospital the same day. I'll have a weeks rest and then I can get back to doing everything I love!
Why do I have pain all the way up to my groin?
Vein walls are made to withstand a low blood pressure that is pumped back to the heart by the contraction of your muscles. As I have a connection directly from an artery to a vein, the pressure of the blood flowing into my vein from the artery is pretty high. It's believed that this is the cause of the pain going all the way from the bottom of my foot to the top of my groin. Hopefully once the correct pressure is where it's supposed to be everything should return to normal.
How's my head doing these days?
Since being back in New Zealand and having more focus with my art I've been feeling a lot more positive about life. I stopped taking the anti-depressants over a month ago and I feel really good. I think one of the main things that caused my depression was not feeling listened too, to the point where I doubted the pain was real. I felt lost and hopeless. Having a diagnosis and a doctor that has listened to me has made the world of difference to my life.
This isn't to say it's gone for good. I think I have depressive tendencies and I definitely use exercise and the outdoors as ways to deal with that. Having those options taken away from me highlighted this. Over the passed couple of years I've had to learn other coping mechanisms. This can only be a good thing as we never know what the future holds and now at least I have more tools to tackle every challenge.
Hopefully, the next blog you see from me will be about living pain free and getting back into my running. Fingers crossed!!!
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.
After worrying about it quite a lot I decided to visit a GP in Queenstown. Thankfully he was lovely and he really listened to me, he referred me to a vascular specialist there and then. I drove home and within a couple of hours I'd received a call from the consultant's secretary in Christchurch.
Two days later I made the eight hour drive up to the city.
I thought I'd got over my anxiety visiting doctors but apparently not. My mind was filled with dread waiting for my appointment and my heart palpitating. When I got in the room I cried to the consultant. This was not how I expected it to go!
As I sat and spoke to him he had my ultrasound scan from a year ago on the screen of his computer. He said he could see that I have an arteriovenous malformation. This was also written in the notes from last year alongside the image. We spoke a little more and he advised I should return the following day for a more thorough ultrasound.
I'm pretty lucky that I have a lovely friend in Christchurch that I could stay with and this was a great excuse for a good catch up. The next day I returned to the clinic bright and early. Andy the radiologist was wonderful, he asked me all about the problems I've had over the past couple of years and made sure he scanned all the way up the vein in my leg.
He reassured me that my vein looks healthy, there was no sign of any present or past blood clot and the valves were working normally. He gave me a little information about the malformation and I saw it on the screen but he said it's for the consultant to give me the diagnosis. I made an appointment to return the next day for results with the consultant.
Unfortunately, when I returned the next day the consultant was in surgery so I couldn't see him. He did manage to squeeze in a brief phone conversation though.
He gave me a rough diagnosis. And he gave me a plan of action. This is not to say they can definitely cure my pain. The pain originated from one spot but is now all the way up my leg to my groin. The consultant said that this problem wouldn't cause pain all the way up to my groin but he did say the brain is very clever and if you've been suffering with pain for a long time it can trick you into thinking it's else where.
I asked the doctor if such a small issue could cause so much pain and he said generally no but he did see one woman that wanted to cut off her leg due to something similar. To which I replied that I've often felt the desire to rip my leg off!
I asked him what the effects of this procedure would be on my body in terms of future physical activity. He said for most people they would feel completely normal but for my level of activity he wouldn't know.
So what is actually going on in my leg???
Well, I haven't yet spoken to the doctor that will do the procedure, the one that read the ultrasound scan. He will hopefully give me some more detailed information soon.
What I have been told is that I have an arteriovenous malformation. Specifically, there is an artery going through my muscle. This is where there is a lump on my leg that all the pain originates from. An artery going through muscle is called a Perforator. Abnormal veins have grown around this artery. This is the problem.
Something pretty interesting that I've learned is that this is a form of birthmark! A vascular birthmark which is where blood vessels grow in a bundle that shouldn't exist.
I can only assume that the amount of exercise I do has stretched these abnormal vessels over the years. This past year I have reduced my exercise down to pretty much doing nothing yet I am still getting symptoms, even while sitting. I read some information stating that these birthmarks 'may be more filled or swollen after activity or due to the effects of gravity, especially in the arms or legs'. This might explain how sitting or standing for a while causes me pain.
What is the plan going forward???
So the procedure that has been suggested to me is called Sclerotherapy. This treatment is commonly done for varicose veins. Most varicose veins are on the surface of the skin so they are easily visible and easily treated. My problem is internal so a little more tricky!
As far as I'm aware what they do is inject a substance into the abnormal veins. This substance causes the veins to scar and die off. The blood is then rerouted to the original veins that it should have been going through. And voila!
Well, not quite that simple in my case. As the problem veins aren't visible this all has to be done under x-ray in surgery. I don't think I fancy them guessing where the veins are and accidentally killing off my artery!!
For this reason, the cost of my treatment is approximately NZ$4000. This is because I have to pay for the surgery time, use of technical equipment, the surgeon has to work longer, more expertise, anaesthetic etc etc. You can see how it all adds up.
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As for the future, I can't be sure that this is going to solve my problems but I have hope and I have to try. At the very minimum I assume it will stop the pain that is specifically around the lump. And as this is the most painful area, that will be a huge improvement to my life.
There is nothing I want more than to live a pain-free life where I can enjoy all the activities I'm passionate about. Who knows I might be running around the mountains sooner than I thought!!
** After this problem has affected my life for such a long time there was a funny moment on the phone with the consultant. He explained that after the procedure the symptoms would get worse before they get better. In a very worried voice I asked if this would be a matter of weeks, months, years...
He said, oh no, just a few days!
After suffering for over 21 months, the thought of the pain increasing for just days is hilarious!
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.
Anyway, I persisted and spent a lot of time on the phone pestering my way to get things moving. By the way, this is really not my normal style, I'm far too reserved and 'British' to be pushy but this is me being tested beyond my limits!
In the mean time, I was to take a new drug which should help me with the pain if it is nerve pain from my spine. Unfortunately, you can't take this painkiller with the anti-depressants I was taking but this drug is used for that purpose too. I stopped taking the Sertraline that I was on and gradually increased Amytriptyline to address both issues.
Dr Rogers told me that I could begin running again gradually as I won't be making the condition any worse. I figured I'd do 30 minutes every other day and monitor how the pain changes as I increase the drugs. I thought that I was coping alright as I'd begun to run and spend more time outdoors which helps me mentally. I was crying a lot but assumed it was due to having no diagnosis still. I think actually it was down to being depressed and not treating it enough. (I might have had people tell me I was slipping!)
After being a massive pest I managed to secure myself an appointment to get the results on January 11th. As I walked into Dr Rogers room I saw my MRI scan on his computer. It was clear to see that one of the discs was a different colour to the others. He explained that this was the area he suspected there would be a problem. And that the darker colour was degenerative wear and tear.
There's a slight bulge in the same disc but really not dramatic and not impinging the nerves. He said that if someone came to him with this scan in no pain at all he wouldn't be surprised. It's pretty normal.
As I was listening to the prognosis I could feel emotion building up inside me. Yet again, no definite diagnosis. I was only just managing to maintain my cool but I kept back the tears until leaving his room. Walking down the hospital corridor despair took hold of me. What is wrong with me. I don't believe Dr Rogers thinks my spine is the cause. I don't believe it's the cause.
I have no choice other than to keep increasing the drugs to see if they make any difference to my pain. The doctor wants me to have an epidural steroid injection in my spine. If this cures the problem then it proves the problem is from my back. Unfortunately, I have to wait quite a while for this and have other consultations first. More waiting!
My mum had kindly come over to Manchester to attend my appointment with me. After all of these appointments, scans and tests I'm starting to get quite a lot of anxiety when I see a doctor so having someone with me is great. We spent the day together and chatted lots. When we got back to the house and I spoke to Emily (one of my best buddies) I got even more emotional. The frustration is just unimaginable!
That night as I lay in bed still crying, I reached my limit. I just need a break from it all. I can't escape from my pain unfortunately but I need to do something. I never ask for help. I'm far too stubborn and independent for that. But this last year has taught me that it's okay to ask for help and if anyone I care for was in need I hope they'd ask me. I messaged my boyfriend and asked if he could pay for me to visit him until I need to return for my next appointment. Thankfully he'd been thinking exactly the same thing.
Within a week I was on a plane and travelled back to my home in New Zealand that I've been away from for eight months.
Anyway, 2018, thank you for being the worst year of my life and teaching me many lessons. And 2019, please be better!
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...
It’s been a month since my last blog and boy, has my life been different!!
I got the results of my MRI scan through. I didn’t thoroughly understand what the outcome was but I did understand what I was told to do. NO RUNNING!! (and giving up on this years goal)
You can imagine how my heart sank when I heard this. I was then presented with a bundle of paperwork describing in detail what I COULD do. It went like this:
For the next month focus on aqua-jogging! No running or walking for exercise. Let pain be your guide. If you do anything that hurts, don't do it!