Okay now that I've calmed myself down, I can tell you guys.
(If you want just the short version - scroll down)

To those of you unaware of my health problems: after being told for a half a year I had a sprained ankle and should "move it more" by my doctor, eventually a cast followed for 3 weeks, after which my skating slowly was returning to normal - last november I was doing salchows again without swelling or pain after... However, then I twisted my foot. I was sent to the physical therapist, however, those sessions only rapidly worsened my condition and eventually the PT wrote a letter to my doctor that I should be sent to the hospital. The Dutch health care system is such that you need a note from your doctor to go to a hospital, and also, you can't really change your doctor unless you move (in terms of where you live). Now, after much arguing with my doctor he still refused to send me to the hospital - I could still walk at this point - and sent me to a podotherapist instead. This helped nothing at all, and in july or so, I was basically crying and begging him to send me to the hospital, but he refused to even look at my leg - which was hot and swollen. He suggested I "smear something on it", like "massage cream", and "take something" like "naproxen or ibuprofen". We went home to the Ukraine and there the doctors said it was quite serious and prescribed corticosteroid and non-steroid (diclofenac) anti-inflammatories. Back home, this time on crutches cuz I couldn't walk at all anymore, I went to my physician with my mother, who threw a giant scandal in the office. He did sign the note to send me to the hospital, but NOT to a surgeon like I wanted, he refused to do that. Instead he sent me to the rheuma-specialist - I had to wait for the appointment about three months - and he found nothing wrong with me, and sent me to recovery therapy - I got an appointment in the end of january, this was another 3 months or so.

Meantime, my podotherapist had also conceded that she was powerless to help me and wrote ANOTHER letter to the doctor, suggesting I be sent to a SURGEON in the HOSPITAL. This time, the doctor agreed, reluctantly. I was to the surgeon yesterday.


SHORT VERSION:

He said I have something called post-traumatic dystrophy. A birth trauma to my leg nerve was much worsened by the physiotherapy and the like - I should never even have been sent there, I should have been treated for it immediately!
Best case scenario: it will take years for me to recover. Worst case scenario, I've got "cold" dystrophy for which chances of ever recovering at all are about 10%... MRI scans and the like are still coming up (in 3 weeks) to see if there may be anything else wrong but I'm pretty convinced he's right.

For those of you wondering whether or not I can sue the doctor - in the Netherlands? Nah. Under the Dutch system, doctors are virtually unaccountable for malpractice and even if they are, their licenses are very rarely taken away permanently even in the case of sexual abuse of patients, let alone something like this. More-over, damages for accidentally cutting off the wrong leg are 5000 here as far as I know, and immaterial damages can not be claimed except in some rare cases. So basically it'd make no sense to sue.

So anybody who's got an ear with God or other higher deities - I'd much appreciate if you'd put in a good word for me. I'm gonna need it.


EDIT:
To clarify my intentions with this post: Here mainly I just wanted to inform the lots of kind people here why I'm not posting in the practice thread, not uploading any new video's. And most of all I guess - make people aware of the existence of such a disease. I'd never heard of it. From what I read on the internet, lots of people read about it on the internet, then asked their doctors about it and that's how they got treatment still on time to prevent permanent damage. With a high-risk sport like skating for trauma, I guess I'm just hoping someone, somewhere might remember this story and then catch this sort of thing early, before it advances. Because in the early stages, it's easily treatable.

WOW, Sessy... I don't even know what to say. . . I wish I could just give you a big hug and cry with you. How terribly, terribly frustrating to have to deal with this idiocy! I will be cashing in all of my karma points with the Medical Gods to get your ankle better.

(((((HUG))))

Doubletoe

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Hey Double,
thank you sweetie

Yeah I know At any rate, I don't believe things will be as bad as they say. I've got my mind set on skating again, and everything I've ever truly set my mind on, I got eventually. Besides, I've beaten worse odds before. When I was sixteen or so, doctors thought I had two weeks to live. Still alive, and kicking. And, read my lips, I'm gonna skate again.

Just feeling a little unsettled right now.

I'm so sorry, Sessy. I am so very, very sorry. I'll pray whatever prayers I can think of for your ankle to improve so that you can walk without pain and skate with no or at least manageable pain. In the meantime, can you obtain a copy of your medical records and petition whoever your representative is in your government's legislative body to revisit the law to allow for independent second medical opinions? When a patient is injured by a physician's neglect or outright incompetence, the legislature should be made aware of it.This sort of mismanagement typically costs a lot more in medical bills than does a case properly managed in the first place, even with more costly initial treatments.

I will keep you in my thoughts, prayers and heart.

Oh Sessy, so sorry!! Wow, that's horrifying, the care you've received up until this point. What a mess. You have a great, winning attitude so that's a plus. Hoping for great things for you from now on.

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Sessy....that is horrible, horrible, horrible. I'm so sorry you are going through this!! I will keep you in my prayers daily.

I'm so sorry to hear the news about your ankle. I hope your future medical treatments are better than what was given to you before. Sending {{{hugs}}} and courage.

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Hey. One of my english friends asked why I didn't get the second opinion, I believe somebody above asked something similar so I'm just copy-pasting my answer to him here:

In the Netherlands if you have a health problem, you're to go to your home doctor and that's it (your home doctor is determined by where you live). The easiest second opinion is to go to the emergency home doctor (you can't go to the emergency in the hospital actually, not without a note from the emergency home doctor... Roomie of mine had lung oedema and still needed that note).
If you go to the emergency home doctor for example, you have to get an appointment first - in my home town they don't even make an appointment if they don't think it's urgent. And by urgent I mean if they don't think you'll die within the next couple of hours. So with the leg - well I tried, but it was hopeless. With the neck, with the whiplash earlier this year, I did get a second opinion from the emergency doctor and she's who diagnosed the whiplash and concussion, my own doctor had said I was fine.
And as I've said, other doctors agreed between themselves not to take on patients of other doctors. I tried calling around and they said they didn't take patients that way. Besides my experience with home doctors in the Netherlands generally is that they tend to do everything to keep you from seeing a specialist and that it generally doesn't matter which doctor you have anyway. Not so strange, given that they are on the insurance company's payroll. As for why I didn't get a second opinion from the rheumatologist... I dunno I guess I trusted the guy to know his thing. Although it wasn't actually a doctor, it was a nurse-practitioner because the doctor was overbooked, they said. Anyway. I guess I figured if there was a serious problem they'd have spotted it. With all the blood they took and all.

Anyway yes, it's party my fault. If I had been a little more spoken for myself and a little better at lying (every skater I've talked to said the only way to get taken seriously is to grossly exagerrate your pain, but I can't do that believably or without blushing)... Yes, if I'd been more agressive, it might've played out differently. But if, if. I didn't.

I don't really wanna discuss the Dutch health system, what I think of it, or my own behaviour here. Just wanted to let you know what was going on and stuff basically.

Sessy,
I'm so sorry, this must be terribly frustrating! Now that you know what it is, learn all you can about it. Since you've been neglected for so long, is there any way to get priority for your treatment? What do you think about documenting all this and sending it to the government agency in charge?

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Oh, I'm filing a complaint either way. If nothing else, at least the professional organisation needs to be aware of what's going on. (This is different from going to court - for a court you'd go to a judge, this is before a commission of peers).

Firstly, the hospital lost my documents, not once but twice (thrice if you count the time AFTER my treatment). Second of all, this particular home doctor has made a few too many mistakes in my case. First the misdiagnosed whiplash, for which he also refused to send me to the hospital for x-rays until 6 weeks after the neck injury when I finally threw a tantrum in his office because I had balance issues and horrible headaches, then this thing with the leg (actually the leg was first, but it continued after).

It's just not likely to do much good. But I will, believe me. You're usually advised against doing this (by organisations specialising in patients who believe they were mistreated, I checked with them for among others legal advise in the areas in which I have no expertise) because going to a commission against a home doctor in many cases means that no other home doctor will want to take you after that, but for me that's not going to matter because we're moving in a few months anyway. So I'm definitely going to.

What I also did, was file a complaint with my health insurance company. They should be rather interested, given that they're trying to come up with a ranking of home doctors. By my calculations, the doctor's refusal to act originally already cost them over 5000 euro in specialists and tests, and it's likely to grow steeply with the MRI and other treatment coming up.

Oh Sessy, I'm so sorry. You are such a fighter though that if anyone can beat this you will. My prayers are with you.

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Sessy, I'm so sorry - but I know you are a fighter. You'll get back to skating, I'm sure you will.

(((((Sessy))))) So sorry you have had to go through so much! I believe you that you will be back skating!

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(((((Sessy))))) (I am just speechless... I wouldn't know what to do if I were in that situation myself.)

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Thank you for the support, you guys!!!

I am so sorry to hear this. I got tears in my eyes just reading your posts. I hope a piano falls on your so-called doctor.

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As a guy, I can never figure out when a gal wants sympathy, and when she wants the logical rational solutions she is probably capable of finding herself.

Assuming the latter: why not go to another country and pay for the medical treatment yourself? Perhaps the cost is comparable to what you have been paying to skate (ice time, travel, lessons, fees...). At the least, you could get an expert diagnosis, from a sports doctor (cuz they are oriented towards the idea of getting you back into the sport) you've had a good referral for, and decide where to go from there.

BTW I don't know about other countries, but in the US, emergency rooms, and quite often hospitals in general, are very much the wrong way to get service. If you aren't bleeding to death, they are likely to put you in a hospital bed, make you wait a day or two, then charge you several times what it would have cost to do it if you had gone directly to the office of the specialist. Especially if you want a particular specialist.

Anyway, best of luck.

And sympathy too.

Oh I did go to an other country - in summer, I went to the Ukraine. We couldn't stay there for a long time though and at that point the focus was mainly on getting the inflammation down and preventing it from spreading to my knee tendons (which they did, actually - my knee was no longer swollen after the month in the Ukraine and didn't bother me anymore, either). Also they didn't think of dystrophy there then, they thought it was just your average run of the mill inflammation and were actually quite puzzled why all the anti-inflammatories were having only limited effect.

At any rate, now that they have diagnosed this they fully intend to treat it so it doesn't really make sense to go and flee abroad now, does it?

And it's okay - I'm not a very "gal-ish" gal. I can never figure out when a woman wants company and when constructive advise either.
Here mainly I just wanted to inform the lots of kind people here why I'm not posting in the practice thread, not uploading any new video's. And most of all I guess - make people aware of the existence of such a disease. I'd never heard of it. From what I read on the internet, lots of people read about it on the internet, then asked their doctors about it and that's how they got treatment still on time to prevent permanent damage. With a high-risk sport like skating for trauma, I guess I'm just hoping someone, somewhere might remember this story and then catch this sort of thing early, before it advances. Because in the early stages, it's easily treatable.

*Hugs* Sessy. Yes, you will skate again - it might take awhile, but you'll be back, I just know it. You ask at our rink - one of the coaches knew someone who skated on two artificial legs, even! Even if you aren't able to jump again, there's still dance, and moves, and even figures!

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Incredible! That is something I've been keeping in the back of my head, actually. What do I do if it's not gonna get better. I decided for myself last summer already (and told mom so, which incredibly upset her for some reason) that if my leg never gets better, I'd rather have an artificial one to replace it and then go on skating, rather than sulk at home with pain - maybe skate artistics with a robot-themed performance which would incorporate the leg in the costume. At least the loop for sure can be done on 1 leg...
Now that being said, I really don't intend to let it come to that, but your coaches' acquaintance is giving me even more hope that there's just really no way to lose here. Either I'm getting better and I'm skating again, or I'm skating again with an artificial leg... Yeah I know I'm crazy, but that's just me!

(is there any chance you could find out exactly what sort of prosthetic legs she did have?)

I'm sorry that you're going through this. I'll keep you in my prayers.

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I just did an internet search on "post-traumatic dystrophy", also called CRPS and other names, finding stuff like

http://www.nationalpainfoundation.or...CRPS_Myths.asp

http://www.ritro.com/sections/health...=0000000002462

Several articles say that doctors don't really understand what causes it. Maybe the new doctor coudn't figure out what the problem was either, so that's how he labeled it.

Maybe some of the people in this forum who have medical training could guess better, but as best I follow what these links are saying, there are a lot of people with long-term (chronic) pain and inflammation, and there are a lot of different theories on what causes it, how to treat it, and they can't always get rid of it. Some of the drugs and treatments you were given were consistent with treating pain and inflammation or getting rid of some of the known root causes of same. If a doctor honestly does the best he/she can, and follows the current "standard of care" to which he/she was educated, is that malpractice?

Some of the possible treatments involve drugs that might make you fail a drug test, if you are into the serious competitive stuff.

It really sounds awful.

I've known people who had very long-term recovery from surgery, and people who stayed on drugs with major side effects forever. Yuck.


No matter what the doctor says, were I you, I would be tempted to try specialists in the safest, most conservative treatments for pain and inflammation (cold and hot baths, pressure, mild stretches and motion exercises, fun climates, ice cream and your other favorate foods, romance, anything else fun you need an excuse for) first, like certified athletics trainers or PTs who specialize in sports medicine.

Sessy--

I'm so sorry to hear about your latest tribulations with the medical system. But I do know with your fighting spirit, you will make the best use of your time and energy and options. And I LOVE your signature line. For me, that sums up why this will NOT get the best of you.

HHHUUGGGGGSSSSSSSS!!!

Thin-Ice

But that's just it, he didn't do it to the best of his knowledge. Even when I was crying with pain his idea of dealing with it was to say I should take some over-the-counter painkillers, and he did NOT send me to the hospital (which the insurance would have to pay for), instead he sent me to physiotherapy, and podotheraphy, which both comes out of my own pocket. And at any rate, as I've said, there's really hardly any way of sueing for malpractice in this country. But I am filing a complaint with the professional organisation.

The thing is, we've been doing all that you're saying I should do. The surgeon in Ukraine said a tendon inflammation would take about 3 months with the diclofenac I was taking. That was 6 months ago, and no serious improvement. And I've not been walking, except for around the house, for a half a year now. It's not from giving it enough rest.

The thing that triggered it with the doctor is that my injured leg is very pale compared to the healthy leg, and also that my injured leg feels very cold to the touch compared to my healthy leg - although a few times a month it's actually red and hot. Also that I'm sensitive even to the touch to the skin on the injured leg, and got some problems with my skin on the injured leg. What he's suggesting is pain treatment, steroid anti-inflammatories (as opposed to the diclofenac I'm on now) and after that, revalidation therapy. I don't really see how that would hurt. I'm not in any serious competitive stuff - I've never been that good and even if I had, after 2 years of this, who could still be? - so I'm safe on that really. Also, we don't do drugs tests around here for jobs or anything like that.

Like I said, I'm not a doctor or anything.

But a book I looked at that is aimed at training lower level medical people (ATCs) suggested exactly what they had you do - start with most conservative (non-drug, non-invasive) treatments, progress to mild drugs if that doesn't work, then progress to the more serious drugs if that doesn't work, maybe progress to surgery. That sequence applies to almost everything in medicine.

There are very good reasons for this. Sometimes the mildest possible treatments work. Drugs work by altering the underlying biochemistry of your body, and therefore interfere with it's normal healthy function. All drugs have side effects. Serious drugs, like steroids, have serious long-term side effects. Any other progression might be considered malpractice.

You want a simple solution, and for them to find it immediately. But medicine is not an exact science. It's very empirical, your biochemistry is not my biochemistry, and different treatments work for different people. They have to experiment to learn what works for your individual body, for each type of problem.

They may find a solution that works very well for you.

There are a few doctors who treat long-term problems in precisely the opposite way of the mainstream medical community - they chemically re-inflame the injury, to see if it heals better the second time around. It's called prolotherapy. I've known 2 or 3 skaters who said it worked for them, though the initial treaments hurt even more.

Or you may find your own - don't be afraid to experiment with mild treatments of your own. Try to see if you understand what types of motion, exercise, temperature treatments, foods, etc., tend to create or reduce the inflammation, on your own.

If conventional medicine fails, you could always try traditional medicine (e.g., chinese) treatments - bearing in mind that they are real drugs with real phsyiological effects, that have not been as well tested for safety as the mainstream medical drugs (and the practitioners are unlicensed), as well as chiropractors, Yoga practitioners, etc. I've known different people who said all those techniques worked for them.

A lot of people find dietary changes help - you can be allergic to a food without realizing it, and allergies to substances you have been fine with before often develope, especially if you are exposed to something a lot. I know someone who said her healthiest time was when she went on a wierd diet where she didn't eat the same food twice in a week, so she couldn't build up a high concentration of anything she was allergic to. Unfortunately it proved very time consuming to cook that way, so she went back to prescription drugs which didn't work as well and had major side effects. (But she became a lot better cook, because she had to learn to cook a lot more things.)

Hang in there. May it all go away.

I am so sorry to hear about your ordeal. The only things I can offer are a hug *HUG* and prayers. I have read everyone's posts and I can see that you are a fighter and you will get through this. Keep us updated.