Leg Update 8: The Final Update!

Yay!

It looks like my updates have come to an end!

About my leg anyway!

In my last update – the doctor had told me to go off the contraceptive pill, continue using my compression stocking and take 100mg of aspirin every day.

Ironically, after ten years of pain this seems to have had an amazing effect!

Before the aspirin I’d be lying on the bed unable to move a muscle lest it aggravate the pain before the painkillers set in …

Before the aspirin I’d be waking up in the morning planning to only take 20 steps for the entire day; and those were all full of pain …

Before the aspirin, I had to use a walking stick to get around and I actually understood where Dr. House was coming from in every episode!

After the aspirin, I can get up and walk around freely, do about 200 steps a day and even help a friend move house!

I only wish one of the many doctors I’d seen before hand had managed to suggest the same thing …

Still much better than the Korean hospital that wanted to remove a third of my leg muscle … so glad I walked away from that idea…

Yeah that was a terrible joke …

So according to the doctor the plan is to stay on the aspirin for the next twelve months as it should keep working.

If at that time things go bad or to how they were before then I’ll have to see about the alcohol injections etc but that is something to be used if the current course of action doesn’t work.

Anyway, the doctor has given me the all clear to go back to Korea for twelve months …

Yay! I’m ecstatic!

Finally, I have my life back!

It’ll probably take us about a month or so to get jobs and go through the fun task of applying for visas etc

Now the next fun task; to find a job.

Leg Update 7: The new Specialist!

Oh wow – we’re up to number seven already …

Kill me!

But at least I can see a possible end in sight…

I think…

It might be a bit dim …

Nobody told me there was a dimmer switch on the light at the end of the tunnel!

Stupid interior Decorators!

So I trekked over to my new hospital in Brisbane to see the new specialist, doctor Bob (yeah I’m changing the name just so I don’t get sued!)

I was shown into a room where I was greeted by a female doctor …

Huh? Bob, you’ve gotten more attractive all of a sudden … I thought to myself.

She explains that she assists Dr Bob.

Then starts the usual rigmarole;

We go through my past medical history

She throws in an “Oh my god I can’t believe you’ve had this for ten years”

I hold back all comments about the quality of certain doctors in this country but can’t resist throwing in a “Well it has been mis-diagnosed a couple of times”

She takes my blood pressure and listens to my heart …

“Mmm … that’s interesting” she says

I can feel my mouth go dry and my blood pressure increase.

It’s never good when a doctor says something is interesting …

unless you’re in a restaurant ordering food with them …

even then It’s still an 80% chance it’s still bad news!

“Oh yeah what’s that?” I attempt as calmly as I can manage

“It seems you have a very faint heart murmur” she replies calmly

Dear God! What the hell did I ever do to you, some strange leg malformation and a curved spine weren’t good enough you had to throw in a heart murmur for good measure huh??

Then she goes to get Dr Bob …

Who swans into the room surrounded by an invisible cloud of self importance like Mr Darcy in Pride and Prejudice…

The female doctor reads out the recommendations from my last specialist …

Dr Bob seems skeptical but decides to shove a stethoscope onto the troubled area …

“Pfft, that’s just vein issue” he proclaims after listeneing for all of five seconds. “We don’t need to do an Angiogram for that!” he continues.

Holy crap this guy’s a maverick! Who needs tests when I can listen for five seconds and determine everything that is going on!

I look at him and realise he bears a striking resemblence to Dr House on that TV show.

Then comes the inevitable …

He starts poking the swollen muscle …

Please tell me why doctors feel the need to poke it? Is it to see me jump ten feet and then put my hands around their throats until they stop??

I restrained myself from hitting the guy in the face … this time …

Instead I opted for cowering in the corner furtherst away from him!

Yeah, I’m an empowered woman!

Then some discussion went around about my options etc

Surgery, Injections of alcohol, Blood thinners or live with it.

Surgery is not that great – it’s impossible to get it all and harder to operate on the next time.

The injections of alcohol to basically kill the veins that are malformed and not working properly is successful in 80% of cases.

In 10 % it is ineffective.

In the other 10% is when the alcohol leaks out into the muscle killing off bits that you need (that never repair) … I already knew this bit and am not perturbed if I can live without pain…

Then he tells me that in some cases the alcohol leaks to the skin causing nasty painful ulcers that don’t heal and you have to have skin grafts to get it fixed etc (swapping one pain for another I’m not keen on)

I take it he’s seen some of these cases because he was very serious and sombre while telling me about them…

Typically, I’ve gone a nice shade of white during his explanation.

Then he asks me if I’m on the pill.

“Yes” I reply

“Oh well we have to get you off that, it could be contributing to the problem … the pill is known for causing blood clots … have you ever had a blood clot?” he says

“Ummm, not that I’ve noticed” I say

Can anybody tell me why in all the years I’ve had this not one bloody doctor has suggested taking me off the pill?? The time I suggested to a doctor he scoffed at me and told me that wouldn’t help.

Gah!!!

“Are you alergic to aspirin?” he asks

“Not as far as I know” I reply

“Okay we’ll get you taking that to thin the blood and check on you in a month. After that we might send you to have the injection treatment depending on how it goes” he says

So essentially, I’m stopping the pill and taking 100mg of aspirin a day.

While I’m desperately hoping that this will work and I won’t have to risk going through the injections with the nasty side effects …

If this actually works I think I will go postal!

In ten years it was this bloody simple to fix?

What the … heck???

My next appointment is January 12th.

A Long, Bug Filled Summer

In some previous posts I wrote that my doctor has me wearing a compression stocking on my sore leg to help with the pain.

I have to say that this stocking is the bomb … except it’s a stocking … erm … yeah …

It absolutely does its job – the pain in my leg has decreased a bit so that I don’t have to use my walking stick everywhere I go and I can even manage short walks everyday – you know out of the house – for fun like

I get to experience nature now..

Erm … yay

I’d totally forgotten about the joys of nature … I mean did you know that nature has … um … cute … yeah cute … little bugs?

Well it used to have little bugs …

Unfortunately, they’re gone now …

They’ve been sacrificed to the huge slimey bug with eighteen legs and whopping great antenna antlers that I found sitting on my shoulder the other day.

I think the sacrifice was a peace offering to let the medium sized bugs live.

It was just sitting there all Jiminy Cricket like, soaking up the rays; chilling out.

I think he wanted directions … to where the big bugs were hanging out these days.

Being a nature aficionado I pointed him in the direction of the sole of my shoe. I even gave him a lift by way of my hand … to the ground next to my shoe.

That took seconds off my life … how does a bug even grow that big?

How on earth does it fit on my tiny shoulder?

“Taxi!” … sorry nature … I’m done!

I’ve decided to enjoy nature as the gods obviously intended … looking at it through a car window!

But back to the fantastic compression stocking …

That I wear on one leg …

Did you know that I live in Queensland?

It’s damn hot here …

Do you know how stupid I look wearing shorts with ONE stocking coming out of them?

Did I mention the stocking was a brown or beige type colour?

Did I also mention that due to my travels I haven’t experienced a real Queensland summer in oh say fifteen years?

Yup I’m whiter than Sarah Palin …

And probably more skilled in politics … yeah that was low … but funny

Okay then, I’m whiter than Shaft…

Oh wait …

Fine then look I’m so white people can’t get within a metre of me due to the glare!

Unfortunately, it doesn’t have the same Kryptonite like affect on bugs!

Somehow, I have to get my legs to match for summer …

I might have to lower myself to using fake tan …

Does fake tan come in beige?

No?

Crap!

Maybe I can start a fashion trend?

Funny that didn’t work when I tried to bring leg warmers back last year …

Or the time I tried to wear my Ugg boots to the beach …

Yeah … maybe not …

Maybe I can wear a leg warmer on the other leg to make it look like I meant to do that?

Erm … Queensland summer … it’s only a notch below hell in terms of heat

Yeah … I hit my pain medication hard before writing this post …

You can tell …

This is going to be a long summer.

Leg Update 6: This is taking forever!

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

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

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

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!!!

Leg Update 3: I have a vascular anomalie

Okay so on Tuesday I went and had all my tests done;2 x-rays, a CT scan, an ultrasound and an MRI … all tests that I’ve had before. The MRI was fun, the technician asked me which arm is better for the injection but I said either one so she tried the left and after poking it and prodding it for five minutes with the needle in she couldn’t get any joy so then she tried the other arm …yay! So then I had two sore arms that evening.

The next morning I went to the doctor where my latest diagnosis is that of a vascular anomalie inside the anterior region of the muscle. So now my next trek is off to the vascular surgeon on August 6th at 4pm.

The doctor I was talking to yesterday rattled off a range of possible options that might mean I won’t have to have muscle removed but the real test will be after I speak to the vascular surgeon next week.

So, a tiny bit more information but not much really … other than what I have maybe doesn’t have a name and is a huge head scratcher for the medical profession.

Stay tuned for update 4 … hopefully with some concrete information.

The Tumor: Update 2

Woot! So I’ve made it to the Australian specialist and I have all the information I need and a date for surgery right? I don’t think so!

Gah!

I have to go for another barrage of tests – all the same tests that I’ve had before. Back to the drawing board!

So next week, I’m off to Brissy again for another MRI, CT Scan, x-ray, ultrasound, chest x-ray and who knows what else.

So I have to wait another weeek … the doctor doesn’t seem convinced that it’s a Hemangioma (blood tumor) but then he refused to look at the MRI photos because he said it wouldn’t mean anything to him (what the heck??)

Oh well, wait and see.

On the plus side I now have prescription for Panadeine Forte (yay my addiciton to pain killers continues!)

So Class, What is a Tumor?

This became an impromptu class yesterday, after I told my kids that I was leaving to go back to the big bad land of Hoju (Korean word for Australia). This is one of my favourite classes and it consists of four kids about 10-12 years old. 

They knew that my leg was in pain but they wanted to know why didn’t I get a Korean doctor to fix it (they thought it was the language problem how perceptive), how do you translate “Because the psychotic doctor wanted to take half my leg with the tumor” in english that a 3 year old might understand. This class is early intermediate level, they haven’t even learnt past tense yet so it was a difficult explanation. In the end I managed to explain with miming hand movements of walking an exaggerated limp if I stayed in Korea and if I went to Australia I’d be walking fine (I still have no idea if this is the case but it seemed easy enough at the time). I also threw in an extra “Australia doctor small money, Korean doctor BIG money” with hand actions to emphasise small and big this seemed to work too.

After this there were more questions and in the end I went to the white board with a marker and drew a leg, put a circle for the muscle and then a colored dot for the tumor – with an arrow pointing to it and the word tumor written on the board.  Then Agnes probably the smartest kid in the class wanted to know how big the tumor was, so I told them 13cm x 7cm and she got out the ruler to measure and went and made my small dot decidedly bigger – how on earth can it be that big? Anyway, I went a strange color of green after that, told the kids it was too scary and rubbed the picture off the board.

It made it all so real in a very very scary way. I do have copies of the MRI’s and have seen them but the dot on those never looks as big as the measurements they gave me, I was always hoping for a mis-translation of the measurements. Actually, I’m still hoping that is the case. I’m so glad I’m coming home in a few days to get it sorted!

Update on My Leg

I’ve missed a few Instant Messages and the like and here’s the update on me and my leg.

There I was sitting in my fabulous private hospital room that looked more like a hotel room with a weird looking single bed rather than a hospital room – there was a little couch, a fridge nearly the size of me and a remote controlled TV on the wall, plus my own bathroom in the room. It was fantastic.

Anyway, I had a consultation with the resident, who ironically had much better english than the specialist surgeon that I had originally seen (who would be operating on me). He started to give me much more information that I hadn’t been told before, or wasn’t made fully aware of.

The biggest part was that when they cut the tumor out of my leg (and for anyone that doesn’t already know it’s only a benign tumor, but unfortunately it’s the size of a horse at 13cm odd) … anyway, when they cut out the tumor out of my leg they will also being taking muscle away as well. Muscle doesn’t repair, it doesn’t grow back – once it’s gone, it’s gone! This will mean that I will have problems moving my ankle for the rest of my life. Before, I was only lead to believe (or maybe I was kidding myself) that there was only a chance that could happen. (Just so you know I didn’t have a translator or anything when I saw the original specialist because this is a hospital that prides itself on everyone speaking english – cough cough)

I could have handled this end result, except a friend of mine that is a nurse who spoke to an orthopedic surgeon in Oz told me that in Australia they don’t do the big cut, or the big cut is a last resort and perhaps there are other things that can be done. I was also told by that friend that these tumors have a 50% chance of coming back … so I could be potentially cutting out muscle for no reason.

Now there I was, in a lot of pain, hoping for the end to be near but I suddenly realised exactly how permanent this was going to be for the rest of my life … words like cripple kept popping into my head (along with visions of a permanent limp). I also thought that if I didn’t at least go to Australia and investigate possible other options I would wonder “what if” for the rest of my life.

So, it’s probably likely that I will go to Australia and be told that the only option is to have the big cut but at least I would have investigated further and have all the information.

So that is why I promptly checked out of the hospital, and confused the hell out of an entire orthopedic medical staff at Yonsei Severance Hospital. As a side note of humour there was nothing funnier than checking out and having to pay the bill for my one and only meal that I had there (as I hadn’t stayed the night I didn’t have to pay for the room – meal cost $26 though) but the cashier, did a double take, thought the computer wasn’t working, made a phone call it was kind of hilariously funny at that point. It took me nearly as long to get out of the hospital as it did to get into it. I feel really quite bad about that though.

My contract here finishes in 6 weeks, so I’ll be back in Oz to pursue it all further then.

If any of these tags bring any foreigners here looking to do research about Yonsei hospital because they are considering having surgery done there, I’m going to write another post about my dealings with the hospital itself. Or if you want to contact me about it just drop a comment here and I’d be glad to answer your questions.