It’s been on my mind to update for quite some time, but the difficulty of Mikes Charcot Foot diagnosis is that it seems to always be a waiting game. I’ve been waiting for something to report that is hopeful and a path forward, but the reality is that it’s still pretty up in the air. However, here is a long overdue update on what’s taken place the last 6 months.

Mike spent over 2.5 months in a wheelchair non weight bearing with the wound vac on. During this time we had home health nurses out to the house 2-3 times a week for dressing changes. This process did what was intended: healing the wound without surgical intervention necessary, clearing up the initial infection, and avoiding any other infections. At the end of September he was cleared to stop the wound vac and have his crow boot altered to correctly fit his foot. This allowed him to get out of the wheelchair and begin to walk again with the use of the crow boot! This was a welcomed upgrade from the wheelchair and allowed Mike a lot more opportunities to get around. Living in a wheelchair is far more challenging than i ever expected, so the ability to walk again is fantastic. However the transition was also mentally challenging because it confirmed that Mike's foot has a deformity that will always need some sort of assistive device such as the crow boot. The crow boot is great for providing foot structure stability, but it has a rocker bottom by design so you don't have so much blunt impact each time you take a step. This is challenging for balance, especially considering he has a prosthetic on the other leg. 

So that brings us up to the "waiting game." From here, Mike has 3 options. 

1. Stay in the crow boot. Its large, affects his balance, gets lots of questions out in public, and is a pain to get on and off and to fit under pants. But it provides the foot stability he needs and keeps him walking. If this is the path, then he could hope to graduate to a brace after 3-6 months of stable xrays showing no additional movement or deterioration of the bones. However any movement means timeline starts over.

2. Reconstructive surgery. This option would hopefully result in a normal looking foot and wearing normal shoes, which is the most ideal outcome! However this option is a full 12 month process and thats if all goes well. 3 months non weight bearing (wheelchair), 3-6 month in the crow boot, then 2-3 months in a brace then to a normal shoe. At all stages these timelines could extend. The dr said to think of it as a year long process at a minimum.

3. Amputation, which results in Mike being a bi lateral amputee which has a lot of its own challenges. 

Mike believes he wants to go the path of reconstructive surgery. He has a few prerequisites such as needing his A1C a little lower, so he’s working on some of those things. His next appointment is in February. Since this is a rare condition, appointments are hard to get, so that’s delays everything too. The dr said from the time of decision to schedule surgery (with all prerequisites fulfilled) it will be about a month for him to prepare, schedule, get pre ops completed, etc. 

So as I said, it’s a waiting game and a lot of unknowns. There’s no quick or magic “cure.” For now it’s just figuring out the best path forward.

We were thankful to enjoy a beautiful holiday season together, and continue to try our best to remain positive and hopeful. We’re thankful for all of you and your support, and wish you all a Happy and Healthy 2024! Health is so important and can often be an afterthought, but our experiences have shown how valuable it is, so our wish is that you all remain healthy in 2024!