Miserable Malalignment Syndrome?

[Porgeous]

Thanks Sheri and Zickey

I'm waiting to see another orthopaedic consultant at my local hospital. I've had more problems since my first post though, and I'm not sure if they are related?

6 weeks ago, I got a strange pain in my left hip, and then I couldn't get out of bed the next morning - the doctor has diagnosed severe sciatica. The pain has been absolute agony. I was on Co-drydamol and ibuprofen, round the clock, which was too many to take in 24 hours, so I'm on Targinact now, for severe pain. Ice packs did start to help, x3 a day, but then stopped working so well.

Do you think is it all related? When I move my left leg up and down, there are several clicking sounds in the pelvic/spine region.

I would really like to learn more about what exercises I could do - I certainly do not want this to affect my life and I will carry on walking and cycling through the pain if I have to....

Thanks very much for your responses, I do appreciate it.

Porgeous

[yanagiuxinta]

Hey Porgeous.

I was a sufferer of diagnosed Miserable Malalignment Syndrome, from when I was eight up to now (I am now 17). I am still undergoing minor treatment.
What you described did not sound like the condition I had (which has since been cured by a series of operations, though I still have minor operations to undergo in order to complete the treatment, as well as physiotherapy). However, I was told that I had a very extreme case - I didn't suffer from joint pain, but my kneecaps would subluxate (pop out, then pop back in again - mini dislocations, you could say) without warning. As a result, I couldn't run or jump, only walk quickly. I was pulled out of gym lessons in high school, and often had to sit out of the lessons in primary school as my knees would pop out during the warm ups.

I was diagnosed when I was ten, I think (by a chiropodist, oddly enough, who referred me to my consultant), and was given physiotherapy to try and reduce the problem. I knew I would have to have surgery, but my consultant wanted to postphone it until my growth plates had closed. On the X-rays, it could be seen that my femurs were twisted (inwards, I think - unfortunately I didn't understand a lot of what was being said at the time, and cannot remember it now), and my tibias were twisted in the opposite direction. This caused the instability of my patellas. Another thing that may have been related was that I had a pronounced bunion on my right foot, unusual for such a young age.

I had the first surgery when I was thirteen or fourteen, when both of my patellas fully dislocated within eight days of each other. My right patella would not go back in, and so I had to wear a cricket splint on both legs for months. They dislocated around Easter time, and I had the surgery on my right leg in September, I think. During the surgery, my femur was broken in two, and twisted, to straighten it. A metal rod was put down the centre of the bone, and pinned in place. Rather than break my tibia fully, the surgeon cut into it, lifting a flap of bone and pulling it across and pinning it, the act of which effectively straightened the lower leg.

The same operation was carried out on my left leg in June the next year (the knee had dislocated again that January, but I had succeeded in putting it back in myself before the paramedics arrived). I had a third operation, on my right ankle. This was to straighten it after the first surgery, as when the leg was straightened, the ankle was turned out by forty five degrees or more. Also, the pins in both tibias were removed, to dynamise the femurs (they were very slow in healing). This was a minor operation compared to the previous two.

My future operation is to remove the metalwork in my ankle, and to inject bone marrow from my hip into my left femur as it has failed to calcify (I've been walking around with a broken leg for a year and didn't know it). This, and the following physiotherapy, should end my treatment.

I know there are only a few similarities between our cases, but I wouldn't disregard the possibility of you having MMS entirely, as each case is bound to be different. I was told that it is a fairly common syndrome, usually in tall, slim girls who grow quickly (as I did), but that most do not suffer from symptoms as the twist in their bones is not very pronounced, as mine was.

To your later post, I'd guess that all of the symptoms were related, but this is purely my opinion, and I may be wrong.

From what you've said, pain is one of your major symptoms. I did not experience this before the surgeries, but I naturally have a high pain threshold, made higher by the subluxations and surgery recovery periods (these ranged from nine months to four, at a guess, for my ankle). Just because I did not experience pain does not mean our conditions are different, and so I'd advise you to do what I did - consult a specialist orthopaedic surgeon for a proper diagnosis, as well as arrange physiotherapy sessions if you haven't already. I wish you the best of luck, whatever the outcome of your hospital visits, and I hope that it can be resolved. I know having your life restricted to how far you can walk can be the most irritating thing, and in your case painful, but with luck, you'll be able to beat it and have the life you want. Good luck, and I hope this helps.

[Porgeous]

Hi there

Thanks for your reply - sounds like you have had quite an ordeal with the surgery.

I think it sounds like a similar thing, though mine is without the subluxations, thank goodness - is it really painful? I have the femoral anteversion, external tibial torsion, valgus deformity and flat feet. I found out recently that I have a new diagnosis of hypermobility syndrome, so this is what is causing all the pain in the feet and legs. It also looks like the insoles I had caused a significant back injury which isn't quite healed now, even after a year and a half. I have ankle braces for support now, which are helping, plus physiotherapy which has been good for the back. But my knees are starting to really hurt now - they feel they are under enormous pressure - I hope addressing the pains in the feet doesn't cause more problems with the knees!

Anyway, I see some more specialists soon, so at least I feel I have some answers now, and things are starting to make much more sense.

I've been told that surgery is not a option to straighten out the legs, because of the hypermobility syndrome - my skin wouldn't heal very well, and it would cause lots of scarring.

Hopefully if I can get the pain under control more, then I can learn to live with it.

Thanks again for sharing your story, and I hope all the surgery you have left goes really well.

All the best,

P

[yanagiuxinta]

Hiya,

No worries - you could say the surgeries have been an ordeal XD but rather that than the constant fear that suddenly my kneecap wouldn't be where it was supposed to be after every step.

I can't remember if the subluxations were painful or not, in the beginning, but I know that by the time I required surgery, they didn't hurt - just made me fall over and yell in shock more than anything. Oddly enough, you never get used to your body popping things out of place at any given moment. Funny, that.

I wonder if this new pain in your knees is them adjusting to the ankle braces? Your legs have possibly twisted to adjust to the pain you've been having, in an attempt to lessen the pain. Now that you have the ankle braces, your legs/knees are suffering for the adjustments they made because it's no longer necessary, and are in a more awkward position than they should be? All that is just my speculation, once again, so I'd just grill your physios for answers. It's what I do, anyway haha.

I'm glad that you're getting answers at last - it makes things easier to deal with once you know what you're facing, I reckon.

Thank you, and good luck to you too - I hope you get the answers to your remaining questions, and that you can get your pain under control.

Y.

[hippolata]

hey, i suffer from miserable malalignment syndrome. i'm 5'10 an very clumsy lol. i noticed this post on google, i've never met anyone else with the same problem before. felt like i was the only one. But thats only because out of all the specialists and 1 operation(that caused nerve damage) couldn't tell me. until seeing the same surgeon i saw 12 years ago. told me after a CT scan. also was told that having keyhole wasn't a very good idea..great too late now. taken 1 painful year off work and 2 more painful years to recover from. i find it hard to explain to my friends what it feels like, they usually tell me to quite moaning and shut up. I've been told there is no way to correct the problem. infact I've been told many things sooo much so that i give up. its messed up my career and my teenage years. sooo screw trying and i'm just putting up with pain and mountains of painkillers.