Musings of a Marfan Mom

Marfan Foot Fusion Surgery


Today’s guest post is by my friend Georgia. She is sharing her experience with multiple foot surgeries. Thanks, Georgia!

Growing up the most obvious outward sign that I had Marfans was my foot. My right foot was not only flat but turned inward. I walked on the side of my foot. Over the years it got worst until at 13 the callous that should have been on the bottom of my foot was on the side so far that up it reached all the way to my ankle. I would wear holes into the side of my shoes from walking on it and half the sole would be completely untouched. They tried every type of brace and insert they could but none worked with how bad it was.
After lots of consulting and searching my parents found a doctor about six hours away from where we lived who seemed perfect to do the surgery. He seemed knowledgeable on Marfans, came highly recommended, and worked at a well-known children’s hospital. It turned out his understanding of Marfans Syndrome came from books not experience. He decided to fuse my foot and at the same time my spine where I had a spondylosis of the L5 S1 vertebrae. That combination was a bad one. With my joints healing so slowly I couldn’t stand without crutches but I couldn’t use crutches because of the spine. I also couldn’t do the proper spine exercises because of the foot.

The end result was that the fused bones in my foot collapsed to give me a rocker bottom foot. I also needed another surgery to remove some of the hardware that fell out of my bones. Yep the metal staples just fell out of the bones because the Doctor underestimated the looseness and hypermobility of Marfans joints. I was in and out of a wheelchair for a while and back making the rounds of never ending trial and error foot braces. It also took a long time for me to progress to walking freely with no sort of mobility aid.

There was a positive to all the negatives. The fusion made it easier to brace the foot. The fusion gave it enough stability and a better position so AFO (Ankle Foot Orthotics) worked where they hadn’t before. It wasn’t the hoped for results but it kept me off of crutches (FINALLY) and walking on my own for another good 10 years.

Slowly over the years the foot collapsed more and more. The hypermobility of the joints made the fusion disappear and I got to the point where I was falling if I hit uneven ground, and I required canes and crutches more then I didn’t. I was in a lot of pain. There was no other course of action but another fusion. This time I needed a bigger one. My foot had misaligned so they had to fuse the majority of the foot and preform an osteotomy. That’s where they sever the heel and reattach it to the foot to realign it. They also had to stretch the Achilles tendon. I believe the final choice of Achilles tendon stretching surgeries was percutaneous method where they make several small cuts into the tendon to stretch it out.

X-ray before 2nd surgery

Needless to say there was a long recovery period. I was bed bound for six weeks and not allowed to even let the bottom of the foot rest on the ground. I had to lay with pillows under the knee and upper calves to try and keep any weight off of the heel/back of the leg/foot. Then it was another 3 months of not putting weight on my foot although I could finally rest it on the ground for balance and to sit upright. I used a knee scooter during that time period. A knee scooter is exactly what it sounds like. A scooter you ride kneeling on. I would rest my right knee on it and push with my left. I have to say it was kind of fun although with my knees tendency to dislocate I personally wasn’t able to use it much more then Doctor appointments. There was also the hurdle of my balance. I had lingering problems from a stroke I’d had years earlier.
When I was able to start physical therapy it took only 5 days to get me walking with a walker. The only problem was it hurt, a lot. They were finally able to figure out that my heel had not healed. It was not attached to my foot. Oh it was screwed in place but the bones never grew together. I have osteopenia in my extremities and osteoporosis of the spine and hips. So they thought maybe that was the problem. Lots of doctors later they decided it was a combination of the Marfans hypermobility and the osteopenia making the bones weak.

The bone specialist wanted to start me on a medication for osteoporosis and redo the osteotomy (Recut the heel off) I refused. The doctor told me apparently is impossible for bones to grow back together if they haven’t yet a year later. My next appointment two months later showed it had grown back together. The doctor said in his 20 + years as a foot surgeon that had never happened before. I gladly accepted that little miracle. My grandmother very much attributed it to prayer. She was our family’s prayer warier and told me she’d faithfully prayed for that every day for the last year.

X-ray after 2nd surgery

I can walk around the house again without crutches although standing for anything longer than 5 minutes is to painful. When going out in public on any sort of unfamiliar or uneven ground I use forearm crutches. When there is any sort of distance or there is a need to stand I have to use a wheelchair. Even with this I don’t consider the second surgery a failure like the first. The goal was to keep me walking and avoid amputation and they did that. The doctor had actual experience on Marfans feet and was willing and did consult with some of the Marfans community’s best doctors. My mobility is limited and there’s a fair share of pain still involved. I’m able to manage it without pain meds and have an insanely awesome support system to do or help me do what I can’t do on my own.

Each operation had its downfalls and challenges, but each operation played its part in keeping me more mobile than I would have been before it. I don’t think there were any other options for my foot either time. Outside of having a doctor who 1.was more competent then the first one, and 2 who wouldn’t have done both my spine and foot together, there was nothing that could have been done differently. My foot was severely deformed from the Marfans. So much so that still today the rest of that leg is misaligned because of how badly the foot was twisted. It left my knee dislocating at the slightest wrong movement and my hip cracking through the wall of the hip socket. So really there was no choice. If there had been any other options then the first fusion my parents would have taken it. We played the hand we were dealt. With the advances they have today I have no doubt the outcome would have been different. The experience and options they had for my second foot surgery compared to my first were amazing. I don’t regret what I went through. I know that myself and my family fought to the best of our ability.

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