In January this year I tripped on a suitcase in the middle of the night, and twisted my left foot. It was a silly and very simple fall but it was also extremely painful, and for the next 12 hours I couldn’t stand, and as we were going away for 10 days from that afternoon, I didn’t want to take any chances, and so off I went to ER!! My concern was that because I couldn’t weight bear at all (NWB), something could be broken, and so they did X-rays, and assumed that the sound of hooves was a horse (sprain), and sent me home to rest it and heal. After two month and no healing they did X-rays again and came up with the same result. Two months AGAIN (now at four months!) I was ready to pull my hair out! And when my husband decided to be “helpful” and massage my foot, it instantly became about ten times worse (we now know because it was dislocated and by massaging it he stretched the tendons even more and made the dislocation worse!).
Thankfully I have an amazing GP, who knows a good Orthopod who although fully booked for months ahead, said I could zip straight over and he would see me in his lunch break. He took one look at it and said it’s Lisfranc Injury (LFI)! I had never heard of that, and neither had my GP, or any of the other medics that have been involved over the 7 months since January! Knowing that the bones were dislocated was a CRAZY thought, especially after so long, but it made total sense to the level of pain that I have experienced constantly since then, but it didn’t fully explain why it wasn’t getting better.
This is a Lisfranc Injury:
( http://ezinearticles.com/?Lisfranc-Fractures-and-Dislocations—Sourcing-Useful-Information-About-Lisfranc-Injuries&id=7896901 )
So the other community that I have been a part of since late May, is the Lisfranc Injury community.
Between myself and my GP we then went on to do a TON of research into LFIs, and it made total sense that it had been missed! Basically, it’s another Zebra, even in the most robust of people. If the injury involves a broken bone then obviously it is picked up on an Xray and dealt with, but for dislocations, the radiologist firstly needs to know what an LFI is (most don’t because it actually so rare!!), and secondly, the bones in this part of the foot are so small, and the gaps between them even smaller, so a few mm out of whack is very difficult to pick up when you are looking for a break, and so LFIs are documented as being the most misdiagnosed injury there is!! They are also extremely rare! Talk about being a Zebra! And that is with normal healthy people!!
So while the dislocation is only a few mm out, a bone that is out of place is painful whether it is a little bit out or a lot out! It hurts like hell, and has been constant for 7 months now, and been 10 times worse since it was lovingly massaged in May!
LFIs are not only extremely rare, and THE most misdiagnosed injury, but they are VERY hard to fix and take a LONG time to heal. The emotional as well as physical toll is massive. In a healthy, normal strong athlete with an LFI, these are what to expect:
“After [surgery to put in pins and plates etc] of the Lisfrancinjury, the patient is placed in a bulky, compressivedressing with a short-leg splint and is kept non-weightbearing. Approximately 1 week after surgery, the suturesare removed and a fracture boot is applied with the patient who is kept non weight bearing for a total of 6 to 8 weeks. Pins are usually removed in the clinic6 weeks postoperatively. At approximately 8 weeks post-operatively, progressive weight bearing in the boot isbegun, and the transition from the boot to a rigid-soleshoe occurs as the patient tolerates. We generally removethe Lisfranc screw around postoperative month 4 to 6,depending on the radiographs and clinical course of theathlete. After recovery from the implant removal, theathlete can begin to return slowly to athletic participationwhen strength and conditioning permit.”
In other words, up to 12 weeks on crutches, and up to a year or more before final results, and often longer…. And this is with normal healthy people, never mind people who also have EDS.
So while we are walking (not literally 😦 ) the EDS journey, at the same time we need to deal with the LFI itself. It was the “accident” that happened to my foot, but it was so bad from something so simple because of the EDS and it is also not healing at all because of the EDS (even though in the normal LFI timeline, I am not THAT far off track, but it should have improved maybe a little??)
So the questions that the Orthopod and my GP and I are facing are these:
– Do we do surgery to fuse the bones together for a relative chance of success? Or do we not touch it because the chances of surgery doing more harm than good in a healthy foot are not that great so will mine be even worse? I fell and landed on my wrist 15 years ago, and the injury resulted in “trauma induced carpel tunnel syndrome”. Normally Carpel Tunnel CTS) is something that happens over time and gets worse and worse, sometimes requiring surgery to release the pressure on the nerves and tendons and reduce the pain. It is a condition in it’s own right. EDS patients are prone to Carpel Tunnel pressure anyway because our tendons are too stretchy, but sudden onset from a “trauma” is unusual for anyone, even us zebras. Hence when I fell, the doctors all heard hooves and assumed it was a horse, and my Carpel Tunnel wasn’t picked up for five months when my wrist didn’t heal and I eventually had an MRI. They were surprised that such a small fall had produced such a major trauma as the CT, but they did the surgery, and then assumed I would get better … which I kind of did eventually, after a total of 11 months in a cast and many years of physio… when it never healed properly, it was put down to just “one of those things”… so we are nervous about how much my injured foot is even able to heal, and whether or not the surgery will do more harm than good as with some of my other surgeries!
– If we do nothing though, and the dislocation cannot fix itself because the tendons aren’t strong enough and the arch has already collapsed, then will it never get better? My wrist took surgery, physio and years of totally protecting it to heal (and only to about 90%), and I cannot give a foot 3-5 years of complete protection in a cast with NO weight bearing at all! … it would mean NO walking (and that means NO walking even to the loo in the middle of the night etc) AT ALL!!
– My other joints can’t share the load and keep my foot totally off the ground with any crutches, so NO WEIGHT BEARING for 3-5 years means 3-5 years in a wheel chair! That just feels crazy! … and what level of success will we have after that anyway?
So there are two very separate yet intertwined health issues right now. They are both Zebras, and there are very few experts in either. One is the underlying EDS, which has no cure, and no chance of improving, yet is not degenerative as such… and the second is the LFI which all of this year and for the foreseeable future, is keeping me off my feet.
Over and above the EDS pain, the arch and bones in my left foot have already collapsed, and have now been dislocated for 8 months already and because of the EDS my tendons aren’t strong enough to bring them back into place, and surgery to fuse them into place is very risky … so until we come up with a better solution, my foot remains VERY painfully dislocated!
If you want even more detailed info, here is a great article with lots of detail 🙂