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Old 01-11-2013, 06:26 PM   #1
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Join Date: Jan 2013
Location: Sydney
Posts: 16
khaleesi HB User
foot pain since I was 10

Hi everyone,

I am wishing you all the best.

I was diagnosed with calcaneonavicular coalition in September at the age of 32. I've had foot pain since I was 10 which became incredibly intense at 17. I saw a physio, got orthotics which didn't improve the pain and couldn't address the severity of the flatness of my feet, and then saw a surgeon when I was 20 who did not notice the coalition. My 20s were unfortunately largely lost to increasing pain and immobility, over time I could do less and less, and simple things started to become out of the question. I also developed secondary muscle pains because of all the biomechanical problems.

Can I ask what symptoms people are having prior to diagnosis? The thing is I don't really have pain where the coalition is located. At all! Rather, my ankles are extremely unstable and roll in pathologically so that my heel is at an extreme angle. My understanding is that this kind of deformity can be caused by the coalition.

To cut a long story short, although a bunch of people looked at the same x-ray, it wasn't until the third surgeon who is someone with a reputation for brilliance who I sought out in desperation had a look that he took about 30 seconds to diagnose it. I have been in pain since I was 10.

In my case I have not had surgery yet and also do not have active insurance. I am 6 months into a 12 month qualifying period and wondering how I will be able to afford any gaps. I have stairs in my flat and can't afford to move, and don't have a car, nearby family or friends that have cars, so am freaked out about that also. For me personally, I'm at the point where it is so painful to stand and walk, and the pressure on my hamstrings is crazy so now it also hurts to sit all the time. I wish I had surgery years ago and feel that perhaps I could have reclaimed some of my youth. It's quite emotional for me as limitations caused by pain have affected all my life goals and my relationships. For instance, I'm not working; I love music and would like to go and see bands, but there's just no way I can even stand through a gig any more. Now even small errands involving tiny amounts of walking have become these crazy missions.

Other emotions include a lot of fear about recovery, a huge amount of hope for recovery, and anger that it took so, so long to seek an answer and that I was not offered anything but unhelpful conservative treatment for so long. I have felt really invalidated by the medical profession and very frustrated. Finally, I am also grateful to have finally received a diagnosis, which is gold.

In my case I had to face arthrodesis (triple fusion) while I waited on the results of a bone scan. Luckily for me although there is arthritis it has not progressed far enough.

The surgeon who diagnosed me says he doesn't do resections on adults. (Which has caused me to spend a lot of time wondering how things may have been different if they had operated when I was young.) Instead he has suggested calcaneal osteotomy and gastrocnemius lengthening. This would be on both feet and legs. He would do these as 4 staged procedures. When I found that part out my heart sank because it seems like it could take up to a year to fully recover from a single procedure, so.. Also, that would mean having to pay 4 gaps... I feel like I am at the foot of a giant mountain. Completely overwhelmed and a little excited because the surgeon said these ops could offer me "up to 85%" improvement in pain and function. However, I have some concerns he has downplayed potential side effects, saying it is largely people who have complex regional pain syndrome and they're approximately 3%. I haven't been given a lot of other information and will have to go back to see him. I live by myself and have 6 months to plan for this.

Your stories are helpful.

Last edited by Administrator; 01-13-2013 at 12:33 AM.

 
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