Leg Update 6: This is taking forever!

30 09 2008

This isn’t just a whinge; there is actually some news. In the last update at the beginning of September I’d just seen Dr. Duffy, the vascular surgeon who was basically referring me onto another vascular surgeon over at Princess Alexandria Hospital. The new doctor is a public doctor (so free treatment) and also a whiz with this ballooning and gluing thing.

I finally got word that my first consultation with this doctor will be on November 17th. That is a long time away. Patience is not my strong point and this is taking forever!

I’d say you could put money on the fact that I will be in Australia at Christmas time.


Leg Update 5: The Vascular Surgeon Again

3 09 2008

Okay so when I left you all last, I had just seen a fantastic Vascular Surgeon Dr. Peter Duffy and he had told me what was wrong with me (malformation of the veins in my leg muscle) and that my situation was difficult and he wanted to consult his colleagues and get back to me.

Well today I had the next appointment where he spoke to me about what they all came up with after they put their heads together.

What they have decided is to send me for some more tests to get a better idea of how best to treat the thing. I get to have an Angiogram where they insert a Catheter into my groin and run a tube down to the muscle in my leg (below my knee) and inject some dye into it and see what the blood is doing and where the blockages are. They are also going to do a bone scan to see if the pressure in the muscle has caused fractures in the bone of my leg. The doctor was explaining that the amount of pain I am experiencing is not what I should be experiencing with a simple vein malformation so they are trying to find what is causing the pain exactly.

Another plus is that he has referred me to a different team of Doctors over at Princess Alexandria hospital. These are public doctors which will be a bit of relief to the hip pocket but I’m guessing it’s going to be quite a while before I get to flit off overseas again.

Leg Update 4: The Vascular Surgeon

7 08 2008

Today was my trip to the Vascular Surgeon. Dr Peter Duffy based out of the Mater Hospital (a hospital I can now find my way to blindfolded from my house because I’ve been there so many times in the last couple of weeks).

The Cliff Notes version; I saw the doctor for an hour. He went through and explained what I had and the possibilities to treat it. He also told me that I’m a difficult case and he wants to consult his colleagues at the next meeting of all the vascular surgeons to work out how best to treat it. He also gave me a script for a compression stocking that will put pressure on the muscle and reduce the excess lump of blood in the muscle.

The rest of this post while going into more detail, will also include a bit of compare and contrast about my experiences with Yonsei Hospital versus the experience with the Mater Hospital in Australia. For anyone who is considering under-going medical care in South Korea for anything complicated it is worth a serious look – it will be an eye opener!

For anyone who is looking for a vascular surgeon; can I just say that based on only one consultation Dr. Duffy is fantastic. He spent an hour with me going through ALL of my test results from the myriad of tests that I had last week. He explained to me what they all meant and what the pictures in the MRI’s, ultrasound and CT scan meant. He got me up on the table and looked at my leg, he poked and prodded, he got out the stethoscope and listened to blood pressure of the lump and areas around it, even checked my pulse at the top of the leg and the foot to check that blood wasn’t beng blocked etc (apparantly all clear on that front – yay). He took lots of time with me, explained what I had (which I’ll get to in a minute) and all the options available to me to treat it.

This is the absolute opposite of what happened to me in the hospital in Seoul (Yonsei Severance Hospital) when I saw the specialist. My hospital consult with the orthopedic surgeon (wrong type of doctor for starters – for anyone researching his name was Dr. Shim Kyu Ho) was all of ten minutes most of which consisted of the doctor looking at the MRI photos, chin in hand, saying “Mmmm” (same in both languages apparantly) while his assistant looked on, they pointed at different things and discussed the situation in Korean for the first five minutes. After that they asked me about the pain and then the doctor told me they could remove it but I wouldn’t be able to point my toes afterwards. Since I wasn’t a ballet dancer and the pain was making me unable to live a normal life I thought, okay sounds good. But at no time was I given any options. The decision was taken away from me. (Arguably the decision had been taken away from me the minute I walked into a Korean hospital for a complicated medical issue but remember it had been mis-diagnosed a number of times over a number of years). I should also add here that my strange fear of doctors and all things medical related at this point made me glad that I had little information about my situation … I was happy to remain ignorant and take the relatively simple option at face value.

So what is this mysterious malady that has had doctors and physiotherapists scratching their heads for the last ten years? Well apparantly it IS NOT a Hemangioma (or blood tumor) as was previously diagnosed in South Korea.  It’s called:

Arterior Venous Malformation (AVM)

A picture represntation of AVM

A picture represntation of AVM

What the heck is that you ask? Well apparantly it’s something I was born with, yes I now have medical proof that I was born a freak. Between two muscles in my leg I have malformed veins, some are bigger than they should be and others are smaller than they should be and this is causing pressure on the muscle and obviously a boat load of pain.

Assuming I can believe that this latest diagnosis is correct (possibly too much to assume), you have no idea how great it feels mentally that it isn’t a tumor. There was nothing scarier than realising that I had had a tumor inside me for TEN YEARS causing me pain and I did nothing about it, especially when fun words like malignant were thrown around at one stage. It forced me to push all my fear of doctors and medical stuff aside and take an active interest in my health and how it is being managed.

So what possibilities are there for treatment? The doctor outlined three possiblities, you see already there are three, better than the one option I was given in South Korea!

1. Live with the pain. (Ha Ha … not an option anymore. I’ve been doing that for ten years and I want my life back) This was an option straight from the horse’s mouth.

2. Through surgery removal of the troublesome veins and a certain amount of muscle aswell. This will affect the mobility of the leg ever after. (This seems to be the same option as given to me in South Korea) This option may still happen depending on what the doctor works out with his colleagues. Advantages of this option is that it would be a one time surgery, with a one time cost. The doctor said that there were also ways that we could limit the impact of the lack of mobility, I assume that he was referring to physiotherapy, but I will write that down to ask him if that is the option that he presents after he conferrs with the colleagues.

3. Something fun called ballooning and glueing … that’s right glueing … oh my god doesn’t that sound like fun … I wonder if you can pick up that glue at Bannisters or Office Works … don’t try this at home kids :p I don’t have all the information about this option yet but through a process of ultrasound and with needles they can inject stuff into the veins to fix them. I imagine that ballooning would be blowing up the too small ones and perhaps glueing them refers to where they can inject some of them with something to either kill them or shrink them. I haven’t had a chance to investigate this properly yet but the doctor did explain that a possible side effect of this treatment is that if blood doesn’t get to a certain area of the muscle at all the muscle there can die and effectively it would be the same as if it’s removed, it won’t work and won’t ever re-grow etc. I also want to point out that when I mentioned this possible treatment in South Korea, they scoffed and told me it would be too hard … Mmmm.

4. (sorry forgot about this option) Radiation therapy – basically they zap that area like it’s cancer or something. We didn’t discuss this in-depth but I believe that it can possibly kill areas of the muscle around the target area also.

So overall, the doctor is going to consult with his colleagues at this monthly meeting either this month or next month, whenever the next meeting is and will then give me his plan for the best way to treat it. He also said that treatment might consist of more than one of these options to get the AVM under control.

Oh yeah, he also gave me a script for a compression stocking, much like they give to women with vericose veins. While I was in South Korea I tried wearing normal stokings under my pants to help ward of the freezing temperatures over there and I couldn’t walk for days after wearing them for two days. I’m not sure how this will work and how much pain I might have to go through in order to help kill the pain in the long run. I wonder how long I have to wear it for if it works? Summer is fast approaching too.

Okay just did a quick google search on ballooning and glueing and found an article about a study done on people in 1976-1979 (that’s a long time ago) and it was in the people’s brains. Perhaps they have perfected it by now? At the very least they have had some time for trial and error?

Woot – I have a congenital disorder (yes I was only vaguely familiar with the term usually in the phrase congenital heart defect which until now I sadly thought meant really bad and inoperable due to its use in television and movies – a certain Christian Slater film comes to mind) but now I know a little more thanks to Wikipedia about AVM. I know it isn’t the be all and end all but it’s a place to start. Also there is reference to AVM in fiction and apparantly my disorder has been on a House episode … Woot I’m almost famous! Bwah ha ha ha ha!!!