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!