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!