What?
My disease is called MHE (Multiple Hereditary Exostoses), which means I have, among other things, Osteo Chondroma/Chondromata . It is a genetic disease, which I inherited from my father. To my knowledge, only one other person in our family, besides my father and myself, has the disease, and he lives somewhere in Scotland. Although we are the only ones to have it in the family, everyone on my fathers side of the family 'carries' it, and any children they have have a chance to get it. Of those who actually have the disease, as opposed to just having it in their genes, have a 50% chance of passing it on to their children.
Osteo Chondroma are benign bone tumours. There is a small chance, however, that any of my growths could be come malignant (cancerous). Although the chance of more tumours growing, and existing ones turning malignant is greatest from childhood through puberty, when the rest of the body is growing, the possibility will still exist throughout my whole life.
I was about four when my first growth was found, and the first doctor to be seen about it either didn't know what it was or dismissed it as just a 'calcium deposit' or something of the sort, and that it wasn't really anything to be concerned about. A second opinion was sought, and I was more or less diagnosed correctly this time around.
A few years later, it became pretty clear that something needed to be done. At around 6 years old, my arms had become rather bowed, and could not be properly straightened. I had my first surgery at around 6/7, and my final (eighth) at around 12/13.
About two years ago, some of my joints/growths began to hurt without provocation (although I had to deal with pain for most of my life up until then, it usually only occured as a reaction to something, usually something stupid I should not have been doing). Besides existing tumours getting larger after being 'dormant' for a long period of time, the other main way of telling if a tumour had gone malignant is if they began to hurt. Fortunately, after seeing a doctor, getting X-Rays and what have you, it was determined that none of my growths had gone bad. Although I don't think the doctor ever concluded what the problem was (I think I was supposed to go back after a period of time and see what changed - that never happened), I did some research of my own on the internet. My symptoms matched those of arthritis very closely, and a number of people with MHE experience it earlier on in life than usual. I imagine the next time I visit a doctor, I'll bring it up, and get it properly diagnosed, and see what that means exactly.
Recently, I think I've found a new growth or two, and I've been having trouble keeping a moderate pace while walking. After walking at my normal pace (I'm tall, so it's rather fast) for a sustained period of time, say, 10 minutes, my ankles (or somewhere around there) start burning up, and my feet simply give up on me if I try and maintain it for too long. Stairs, or other 'rough terrain' also make the pain arrive quicker.
Although the pain feels as if it's in my muscles, not the bone, I've been pushing myself physically for the past few months. If I simply had 'weak foot/lower leg muscles', I'd be seeing improvement in that area. My guess (not that I'm a doctor) is that either there's a growth in my ankle that I'm unaware of that's interfering with my muscles, or that the surgery I had on my ankles messed up the muscles there somehow. I intend on pushing myself even more throughout the rest of this year, and if I see no improvement, or if things get worse, I guess I'll finally get around to seeing somebody about it. God, I hope it is does not mean anymore surgery - I hate needles.
The tumours I have (well, can find) and the affect (if any) they have on me
- I have three small growths on the middle finger of my left hand. These don't affect me at all, except that they are uncomfortable for me to touch. Only one of them would be visible to another person, and probably only if I pointed it out to them.
- One small growth on the small finger of my left hand. Not noticable, a little uncomfortable when I touch it. Otherwise do not affect me.
- Two on my left wrist. The one on the top is vaguely visible when my hand is in certain positions. The one on the underside of my wrist (although, really, it's on my forearm bone, it's easier for me to remember it as being on my wrist) is not visible. This one is 'new' (or one I did not previously know of). I'll have to keep an eye on that one. Neither of these are a problem.
- One on the inside of my upper left arm, near the armpit. A very strange one to feel (I imagine everyone would take my word on this one), as I'm unsure exactly how big it is. Where does the growth end and the bone begin? This one is not an issue.
- One on one of my left ribs, in between my back/side. Only vaguely visible, due to my being a little overweight. Will probably be very visible and creepy to see when I get back to being crazy thin Nathan again. This one is very uncomfortable to rest on, and can occasionally cause me to wake up if I roll onto it.
- Two on my left upper leg. One, on the top of my leg, is very hard to find and is no problem at all. The other is on the back of the leg, just above the knee pit. I am unable to bend that leg all the way back (as in, touching my arse with my foot) unless I sit down and put all my weight on it (which is uncomfortable). Sometimes my nerves/tendons/whatever get caught or something, and this hurts an awful lot. I usually have to bend my leg repeatedly when this happens to undo whatever has happened, and the possibility of this happening again if I use my leg for a while afterwards is pretty good. Also, after sitting down for a long time, my legs can go numb, which I assume is the result of a nerve/tendon/blah being interfered by a spur. This used to happen a lot at school assemblies, and happened at my first Hapkido grading.
- Two on the top part of my lower left leg. One is insignificant, the other was very obvious back when I was thin (as in, highschool 60kg thin). Not really visible anymore.
- One on my upper right leg. Was visible when I was thinner, not anymore.
- One on the underside of my second largest toe on the left foot. 'New'.
- One on the underside of my second smallest toe on the left foot. 'New'
Suspect/possible lumps
- My elbows. Everyone says they look strange, but I'm unable to tell if it's because of a tumour, or because of the stuff that happened with my surgery.
- Recently found what could be a large lump on the top part of the left side of my back. I'll have to get one of my friends to 'feel me up' and compare it with the same area on my right side.
- Right index finger. I have trouble bending this finger, but can't find a lump. If there is a tumour, it's INSIDE THE JOINT of two of my finger bones, which makes sense if you have ever heard me grind that particular joint together. Ask me sometime to show it to you.
- Front of my ribcage. Supposedly, this is the lump that was first found and caused the visit to a doctor as a child. My mother can't quite remember where it was. I can't find this lump myself, but one of my ribs seems a little thicker and a tad out of place compared to the others. Perhaps that entire portion of the rib is a lump?
- My ankles. As noted above, perhaps there are some in my ankles. I am extremely sensitive about touching this area (completely a bizarre mental thing though), and so give up very quickly when prodding the area.
My surgeries
On my left and right arms, I had four all up. Two putting the device in, two getting it out. At around six, it was noted that my forearms were too short, and I didn't have complete flexibility in my elbow joints. I'm unsure which arm was operated on first, and I, of course, had some period of time between the first machine being taken out/recovering and it being done of my other arm.
First, they broke my arm. In an efficient, medical way, that is. No large guy called Steve was brought in to do the deed with a cricket bat. Honestly. They placed tissue/matter/whatever in between the sections of bone to encourage them fusing back together or something. They then installed a machine into my arm, which is known as the Ilizarov method. Four pins went into the bone of my forearms (two for each half), all of which connected to a large, black, heavy, metal tube thing. For the next few months (six each arm, I think), a small key would have to be twisted a few degrees each day. This, although not painful, is probably the most uncomfortable, yet interesting feeling I've ever experienced. I could feel the two pieces of the bones in my arms slightly moving away from each other.
With a sling (the machine was very heavy for a child between 6-9), I still went to school. Being the stupid child that I was, I never let the fact that I had a broken arm and heavy, delicate machine installed (oh, I went there!) into it interfere with me running around the playground doing whatever. Of course, being a little unevenly weighted, I remember falling over a few times, and having the machine make contact with the ground. Since the device was embedded into my bone, any sort of serious contact hurt a lot, all the way throught my forearm. It would hurt for days.
This type of surgery is rarely done on arms (usually legs), and very rarely done in children, although a good number of people with MHE get it done at some point in their life.
In terms of lengthening my arms to an adequate length, the operations were successful. However, although my left arm can now more or less straighten normally, my right arm (dominant arm, damn it!) still can't be fully extended. I'll never be a cricket bowler (oh my god CHUCKER), or the like, but that's no loss. The only issue is that certain locks/armbars/throws in Hapkido can cause me to reach my pain threshold very quickly. If someone grabs my right arm, I'm ready to tap at a seconds notice. My left arm, however, is seemingly invincible.
What I had in my arms can be equated to the biggest, coolest and most disgusting (a lot of puss) piercing had by anyone you'll ever meet. It left me with some very cool looking scars (Including one that looks like a cats anus. Something that never bothered me until we actually got a cat, and could see the similarity).
I also had four surgeries in my ankles. One to put in a plate, one to get it removed. Repeated for other ankle. Although these operations are are more recent than the ones done on my arms (around 10-12), I have not the slightest fucking clue why they were done, or what exactly was done to me. I might bother finding out one day.
Other stuff
The large number of people with MHE end up being quite short, regardless of the heights of their parents. At around 6'0" (I haven't measured in a long time), I'm an exception.
Also, a few people with my disease have one of their toes being 'odd'. My middle toe on the left foot is slightly curved, and is also about the same length as my 'second largest' toe. One of my fathers toes is not fully formed, and consists only of cartilage. It also grows out of the foot higher than it should.
My father got of easy with MHE, having only the funny toe and one tumour that causes no problems. Supposedly, the cousin I have in Scotland has it pretty bad, but nobody is able to tell me how it compares with my experience. If one day I go to Scotland to meet, well, the other half of my family I've never met, I hope to be able to see him. If any others have the disease (not just carry it), it's probably only affected them in too minor a way for them to know of it, or not at all.
Although in some ways I have limited flexibility and a low pain threshold in my arms, I seem to have made up for it in other positions. I'm unsure if my disease is the cause of this or not. A lot of arm locks in Hapkido require my opponent to go a lot further than they otherwise would before I'll tap out.
I am also capable of touching my elbows together in front of me whilst keeping my arms by my side, and I can cross my arms behind my back. Doing these, and other similar things, are very comfortable for me, much to the dismay of others.
A lot of my joints rub together, and I can make all sorts of griding noises with my body. If I'm indoors in a dead silent room, I can hear these sounds when I'm walking.
As I said earlier, because of the stress bony growths can have on joints and other nearby pieces of bone, I endure arthitis. At least, I'm 99% sure it's arthritis, since I haven't been diagnosed. Either that, or all my growths have gone cancerous and I'm about a year overdue for being DEAD. So, arthritis it is.
Basically, this means...
- Being cold is doubleplus ungood, since this can cause joints to ache, or make existing pains worse
- Repeated stress on joints is also a big no, and causes pain (possibly injury). I probably should not be doing Hapkido, but I enjoy it too much to give up. I'll never be a long distance runner, and any sort of weightlifting is bad. I suppose it also excludes me from military service (well, infantry type stuff anyway). Also the issue why doing policing isn't possible anymore.
- Writing and typing sucks. After a minute or two of continuous writing/typing, I need to give my hands a rest. This is one of the reasons why I'm no longer interested in computing anymore.
- I have to endure various joints hurting for no reason at all. Somtimes they hurt just because they feel like doing so.
Apparently there is medication you can take for it, but the side affects (memory loss) make the decision simple enough for me.
Since the odds of passing the disease on are 1/2, this is something that would have to be talked about with whoever I end up spending the rest of my life with. I guess it depends on what the 'average' experience of what someone who has MHE is like. If most people have it bad (worse than me), I wouldn't object to adopting. Anyway, that's a discussion for the far future, which won't involve just me.
I fully expect more tumours to appear in the future, and more surgery probably awaits me. Fortunately, I think scars look cool - at least I have that to look forward to.
In a future update, I'll probably include pictures of my more interesting tumours, and of the machine I had in my arms.
So, what's wrong with you guys?
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