khaleesi

Stupidfeet, oh wow. I relate to the absurd slog of obtaining accurate diagnosis. I've spent 15 years trying to resolve my ankle crisis. I'm seeing radiology imaging misinterpretation, lack of timely MRIs, to medical professionals contradicting each other. My last 14 months was also rough and am still turning over rocks trying to sort out my problem, I'm desperately trying to sort out obstacles so I can have recommended procedures with someone who knows what he's doing. I have not had to undergo botched surgery.

No, no: I WANT exactly this kind of honest information. Thank you for taking the time to describe some of your experience! I'm sorry, because I have written a BOOK as a response. Can't help it. I'm so sorry to hear about the necrosis. Soft black bone is not good. That must have been a real shock, especially after all that time and hard work trying to get it sorted and getting nowhere. I was told years ago I may have Kienboch's disease in my wrist, also necrosis of the bone. That freaked me out - and, it was just a ganglion. (Which took another 3 years, so 7 in total, and 3 ultrasounds get diagnosed.)

I'm 32, in foot pain since age 10. By 17 it was severe. My feet roll in almost to the ankle. Everything else thrown out biomechanically. Lots of secondary musculoskeletal pain. Saw doctors, chiropractor and physio, podiatrist, got orthotics. They didn't help much. 3 years later, second podiatrist referred me to first surgeon. His opinion, just keep wearing orthotics. In short, following that, my 20s were spent in worsening pain and increasingly limited function.

By my late 20s, things had reached a certain absurd point of reaching new lows, like falling down the stairs 6 times in one year, and I couldn't find anyone who would help me. I don't know how many doctors I tried to seek help from. I'd go to see my regular treating doctor from about 2005 - unfortunately the best I could find - and say surely something can be done. I'd seen 3 more podiatrists, had 2 more pairs of orthotics, strapping, and was desperate. He refused referral to a surgeon; saying flatly there was nothing they could do, and I didn't want ankle surgery anyway. The best he could offer was an x-ray if I had a sprain. (And even then was so casual that one time a fracture went unnoticed.) I should have gone to someone else but everyone else had been clueless, so I didn't know what I could do. Kept trying, like banging my head on a wall. To say the least, blahhhh it has been freaking miserable.

Still in hope of change..

Last year was a crisis trying to sort this out for once and all. Pain pain pain. My breakthrough moment: a lump suddenly emerged from my ankle and I saw a random afterhours doctor. Thank goodness for him. He recommended a particular surgeon. But my doctor still wouldn't refer me? Ended up at the public hospital orthopaedic clinic while undergoing a long process of trying to find a new doctor. Unfortunately, and predictably, was barely examined, had a 6 month wait for MRI. Saw pain management psychologist.. told me pain symptoms were in my head. Therefore even if I wanted to purse surgery rather than mindfulness (note: it had to be one or the other) I wasn't accepting my problem. Public clinic surgeon obliged me to go to a rheumatologist without reasoning or referral. Rheumatologist said I had no reason to be in pain, never even checked my imaging, I had "strangely shaped" feet but shouldn't have surgery. Just a week before a pain management physician I'd managed to research, immediately confirmed I needed surgery. He referred me to a physio and orthopaedic footwear place, neither of which were any help. I could barely get to any of these places, in a literal sense. Horrible merry-go-round. In my fantasies, I would never have to see another medical professional again.

Finally I saw the good surgeon. He looked at a stupid old foot x-ray seen by who knows how many physicians for about 20 seconds before pointing out calcaneonavicular coalition. That's a bone disorder where the bones fuse together and can distort the foot. Happens when you're a kid (age 10-12ish). In his view the likely underlying cause of my symptoms. Dark moment: his explanation that if arthritis found on the bone scan he ordered was significant enough, the only option was triple arthrodesis. To think this could have been diagnosed in childhood and that now fusion might be my only option in spite of constantly asking physicians for 15 years did my head in. At the same time, so grateful to finally come into contact with someone who knows what they are doing. Luckily, arthritis is moderate, and I don't have to have fusion. Best news. But he's recommending 4 procedures and wants to stage them. Now I have to work out how I can manage to get these procedures done by him. 6 months til insurance kicks in. Lots of obstacles.

You really didn't ask for this info!

I have lots of questions but have said too much. It's just so good to have a chat about this kind of thing. The most burning question I have is: have you ever had to try and deal with stairs??? Is it possible to go up and down on your bum with your leg stuck out? :L I'm in a catch 22 in terms of where I"m living. In short, moving is impossible at this point. Like you, although it could easily get worse, just the mailbox has become like a distant country. Knowing how hard it is now prior to surgery, having to calculate even little trips like putting the rubbish out, I wonder how on earth I will get by afterwards.

I'm so thrilled for you that you found someone good.