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shragae 06-26-2015 06:53 PM

Last year calcaneal osteotomy -- now triple arthrodesis
 
Last year my then 15 year old son had a calcaneal osteotomy and tendon lengthening on his right foot -- very pes planus with severe pain. During surgery the surgeon noted his tendons were very lax (like spaghetti) and said we needed to rule out Marfan Syndrome or Eherls Danlos. . .

So here we are a year later. DS has since been diagnosed with Ehlers-Danlos hypermobility AND severe arthritis of both feet. There is bone erosion in both feet. The calcaneal osteotomy of the right foot has not healed completely (one year later, thanks to the Ehlers Danlos) and he fractured his metatorsal TWICE on that right foot. . .

His left foot is in severe pain (the right actually is MUCH better even with all the above!). With the now known arthritis and Ehlers Danlos the plan is a triple arthrodesis for the left foot and not a calcaneal osteotomy (which it is felt is not a radical enough surgery given his issues).

The doctor does think the right foot will require additional surgery down the road, but for now (since it doesn't hurt) he wants to leave well enough alone. One of the ankle breaks hasn't healed at all. . .

DS is scheduled for a triple arthodesis of the left foot on Tuesday and a lengthening of the achilles. . .

Did I mention he is 16? :(

He is on Enbrel, Methotraxate and Prednisone for the arthritis. . .

shragae 07-09-2015 09:23 AM

Re: Last year calcaneal osteotomy -- now triple arthrodesis
 
My son is a week post-op from the triple arthrodesis and it seems a good time for an update.

Last year he had an outpatient calcaneal osteotomy of the right foot, and a tendon lengthening. His pain was undescribably bad -- screaming and near delirium, even with pain meds.

Well, at the time we didn't know he had really bad arthritis in both feet including bone erosion. He also had undiagnosed Ehlers-Danlos Syndrome (hypermobility) and ampliified pain syndrome.

He's been on meds for nearly 10 months, including Enbrel, for the arthritis.

As a result the swelling in his feet is considerably less. He has been in quite some pain from this year's triple arthrodesis on the left foot, but it is much better than last year. I realize the procedures are different, but in my non-medical opinion the main difference is the controlling of the arthritis pain. . .

Thoughts? Has anyone here had both a calcaneal osteotomy and a triple arthrodesis (and could perhaps compare their pain, healing, etc. with one versus the other)?

35stitches 07-09-2015 10:56 AM

Re: Last year calcaneal osteotomy -- now triple arthrodesis
 
I have no answers, just a word of support from one mom to another. It is difficult to watch your child suffer and we would gladly take the pain ourselves. My heart goes out to you and I hope someone comes forth to give you reassurance!

shragae 07-09-2015 11:30 AM

Re: Last year calcaneal osteotomy -- now triple arthrodesis
 
Thanks for replying. Yes, it is hard to see your child go through all of this. . . second summer in a row in a wheel chair -- and at 16! He couldn't go to prom last year because he couldn't dance (well, he could physically have gone but the thought was too depressing). . .

shragae 07-16-2015 10:45 AM

Re: Last year calcaneal osteotomy -- now triple arthrodesis
 
My son is 2 weeks post-op on his triple arthrodesis (left foot). His recovery this year is MUCH easier than last year's recovery from his calcalneal osteotomy (right foot).

I think the primary reasons this year is better are:

1) he can use his right foot to use crutches. Last year he was mostly wheelchair bound due to the left foot being so bad.

2) he is on Enbrel and Methotraxate for his arthritis (both feet have bad arthritis with bone erosion). This has really lessened his pain. Last year his arthritis was not diagnosed so the foot had surgery which no doubt inflamed it making the pain "that much" worse.

He is only 2 weeks post-op so he has another 6 weeks NWB, but so far so good!

35stitches 07-16-2015 11:23 AM

Re: Last year calcaneal osteotomy -- now triple arthrodesis
 
So happy to here this outcome so far. You must be so relieved! Hoping for continued full recovery! Before you know it this too shall pass! Hugs!


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