I’ve been alluding to it for weeks, and as we’re just weeks away, I wanted to share a little about Addie’s surgery this summer.
It is a common surgery, but I use that term only within the dwarfism community. It is rather invasive surgery, for all ages, but Miss A is only 5- and as I look out to the rest of 2017, I am not sure what the year holds for us. I’ve put everything on hold in life, as far as scheduling goes, though a conference I’ve had on the books since last year is something I still hope to get to.
Basically, whatever Addie needs, she will have… and 2018 will open up our calendar to planning once again!
Addie is having what is called bilateral proximal tibia and fibula osteotomies.
Compared with high tibial osteotomy and total knee arthroplasty, the authors found a simpler surgical procedure, partial fibular osteotomy, could effectively relieve knee pain and also correct the varus deformity for patients with medial compartment knee osteoarthritis (OA).
Essentially, Addie is having both of these procedures. An osteotomy is a surgical operation whereby a bone is cut to shorten or lengthen it or to change its alignment, in this surgery, the tibia and fibula which make up the lower leg, will be cut and pinned.
I will give you this advice: Google with care. When you search images, do not do so in front of children. Addie wanted to see recovery photos and what her legs would look like after. To avoid graphic images, I searched straight legs and showed her pictures of our friends with achondroplasia with straight(er) legs, as well as images of children in casts and wheelchairs. She does not need to see images of bones being cut… and you may not need to, either.
This surgery happens close enough to the knee joint that great care is given to protect the nerves and blood vessels that travel across the knee joint. We thought long and hard about this risk at the knee, which would have been totally alleviated with another surgery called 8-plate. That surgery would not help torsion, however, and may not even totally heal her genu varrum (bowing)… the healing time is less, way less, however the results number game not as strong.
Osteotomies it is.
I preface this whole thing with: this surgery is not, in any way, for length. This has been the #1 question I get, so I wanted to clarify.
For the past 3 years, Addie has been in pain off and on, with the past year becoming increasingly harder to manage and her pain has been more on than off. In the past, I’ve mentioned things like thrust, genu varum, and tibial torsion.
Thrust being seen at the side of her knee joint, on both legs, where her bones flare and push out as she walks. Her gait grows more and more choppy with the passing months, and she complains more and more about her knees and her falls. Genu Varum is the medical term for bowing. If you’ve seen Addie, you know one leg is a bit more bowed, which is not the leg that hurts more. My sweet little anamoly. And lastly, tibial torsion… it’s exactly how it sounds: an inward twisting of the shin bones that causes the feet to turn inward, or have what is also known as a “pigeon-toed” appearance. While torsion does not, in and of itself, cause medical issues, it is another piece to this puzzle.
All of these medical differences with the daily knee and leg pain Addie is feeling, has left us needing to correct these issues sooner-rather-than-later.
At one point, I was piggy backing Tylenol and Advil with the hope that it was the heat/cold/weekend/insert excuse here that had her doubled over, holding her legs, refusing to walk, crying in bed. But, after speaking to doctors Bober and Mackenzie, we realized it was time for surgery.
Is she having both legs done?
Yes. At the same time.
Are there complications?
With any surgery, there are complications that may arise. Infections and anesthesia complications are always a concern, but there are other, specific factors for people with achondroplasia. For this reason, I feel that our decision to go to Delaware, regardless of the physical, emotional, or financial cost, is the most important. Having a medical team that understands Addie’s specific anesthesia needs, not to mention being specialists in her specific bone structure, is the most important thing to us.
Thrombophlebitis, sometimes called deep venous thrombosis (DVT), can occur after any operation, but is more likely to occur following surgery on the hip, pelvis, or knee. DVT occurs when blood clots form in the large veins of the leg. And, one of the most common complications after an osteotomy is the formation of scar tissue in the joint below the kneecap. Bleeding and swelling from the surgery can cause the body to form scar tissue. When scar tissue builds up just below the kneecap, the knee can’t straighten completely. When this happens, another operation may be required to remove the scar tissue.
Lastly, we must think about the possibility of the cut bone edges not healing as planned. This is called a nonunion. This condition requires another operation to add bone graft and perhaps additional metal plates or pins. The bones need to be completely immobilized to fuse, or heal together firmly, so an external fixator may be needed to help hold the bones in position as they heal. The external fixator is worn over the skin and connects to the metal pins to hold them firmly in place. Because the bone of the upper tibia is wide and has a good blood supply, nonunion is rare.
What is recovery?
Addie will be in casts for 6(ish) weeks, then, post pin removal, she will have knee braces and 12 weeks of PT. This timeline may be on track, or totally change. As with any surgery, especially with a child, one must always be prepared for curve balls!
Is it forever?
There is a chance it will need to be repeated, as she grows, her bones may do just what her bones have done. However, waiting to avoid the potential of a repeat could cause more damage. And so.. here we go!
How can people help?
Since I’ve been asked, the easiest answer is be you. Our amazing community, both online and in our little city have been amazing. From a meal delivery offers and gift cards for dinners, to help with our dog, watering the plants, collecting mail, activities to keep Addie occupied, and so much help just making sure our trains run on time. Our dance studio, The Dance Factory, has been amazing with the summer schedule for the girls, my inlaws prepping everything we may need for recovery in the house, and my own amazing parents gifted us with an air conditioner for the sun room (aka Addie’s recovery zone) as well as so much more I could never put into words.
If you know someone going through a hard time, surgery, or otherwise with their child, be there, read between the lines, and love hard. Sometimes nothing, we’re ok means show up, I’m drowning… but we don’t know how to ask.
To everyone out there cheering for this to be a totally seamless procedure and recovery, we thank you. Please, feel free to ask anything (in the comments, or via the Contact page) and I will do my best to answer!