Don’t have time to read the doctoral dissertation below? Skip to the end for the one-paragraph version!
Let me bring you up to speed quickly. Havyn has a severe curve in her spine. You wouldn’t really know it looking at her, but her x-ray tells a different story. The most recent scans showed her curve at 77°. While NF-1 is referred to as a tumor disorder, its impacts go far beyond tumors. There is really no predicting exactly what symptoms a patient will have. You just have to keep a close eye on things and attack whatever problems arise. About 10% of people with NF-1 develop scoliosis, with varying degrees of severity.
Over the years we’ve done a number of things to help control the curve. We’ve always known that someday it would require surgical intervention (Tammy’s freight train) but the goal has been to hold her curve for as long as possible to delay the surgery until she’s older and it can be more effective. The surgeon said, “her curve will tell us when it’s time for surgery.” Put another way, when the curve starts getting out of control, it will be time to force it into submission.
Back in early 2017, Havyn began wearing a special type of cast. At the time her curve was about 50°. After 18 months in casts, her curve seemed to be holding well with measurements still in the 50s.
At this point, it was suggested that Havyn could switch to wearing a more conventional, removable brace. The first brace seemed to work okay. The doctor wasn’t super happy with the way it fit her, but he and the orthotist both agreed that her curve is tough to control because it’s located relatively high in her spine. The brace came up as high as possible but the doctor wished it came up even higher. Notice in the photo how it comes under her armpits and almost up to her neck. After 6-8 months in the brace she outgrew it and was fitted for a second brace. At this point, her curve was somewhere around 60°.
The next brace was nothing but trouble, in our opinion. It fit her so much differently than the first one. For starters, it rode extremely low. Way lower than the first one which the doctor didn’t think was high enough. In addition it was extremely uncomfortable for Havyn. We asked some questions and the orthotist made some adjustments to the brace. It was a bit more comfortable but (in our extremely non-medical opinion) didn’t fit her right.
After just a few months in the brace, back in July, we got the news we were dreading. We were losing the battle with the curve. It was progressing rapidly, despite bracing. It was now over 70°. Surgery was scheduled and we’ve been marching toward a December 2 appointment in the OR.
In the time since then we’ve sought a few other opinions to make sure we’re doing the right thing and choosing the right surgeon/hospital. Others have agreed that it’s time for surgical intervention and they’ve generally agreed on the approach. We met with three different surgeons and were certain we were on the best track. A big surgery now and then about 10-15 more surgeries over the next 6-7 years, followed by a spinal fusion when she’s a teenager. Ugh. We’ll do what we have to do, though.
And then there was Monday…
After some prodding from some friends, we decided to meet with another surgeon, Dr. Puno here in Louisville. In the past couple weeks we’ve talked with two different families whose kids had spinal surgery with Dr. Puno. They both spoke so highly of him that we decided to meet him. After all, it sure would be convenient to have her surgeries done locally instead of making the trek back and forth to Cincinnati so many times.
We both sincerely expected Dr. Puno to talk us through the growing rod procedure just like each other surgeons had done. He’d share with us the hopes, the risks, and ask if we’d like to schedule it. He walked into the room and asked us a few questions about Havyn. He opened up x-ray images. He studied her MRI. Then he turned to us.
“I think we should try more bracing.”
WHAT!? He went on to explain that he believes a different bracing procedure could possibly hold her curve. He suggested a brace be made while Havyn is under anesthesia. This way she can be pushed and pulled into a relatively straight position when the brace is molded. This is how her first brace — the one that worked — was made. Her second brace was made with her awake, standing on a stool.
We asked a number of questions of Dr. Puno. He is hopeful that proper bracing could prevent the growing rod surgery. This would save her those 10-15 operations. He still believes that she will need a spinal fusion later on. He even said other things, like how he wouldn’t have ever used the casts on her. We walked out of the visit in a real state of confusion.
We have now seen 4 surgeons. 75% of them generally agree on the next step. One does not. We really want to try the conservative approach, but we’ve kind of already gone that route. She’s done casting. She’s done bracing. It almost seems like a step backwards.
So here we stand. As of this moment we have BOTH options on the calendar! The December 2 surgery is still scheduled and pre-op procedures have been done. (Including a ridiculous amount of blood drawn from her tiny body. I didn’t know she had that much!!!) And she is scheduled to be fitted for a new brace on October 29.
Right now we are asking for prayers and wisdom. Of course we continue to pray for her healing — a straight back and a cure for NF-1. In addition, though, we are praying for wisdom to make the best choice.
I wish this was easy! I wish there was a repair manual we could consult. However, people are not automobiles. If your car starts making a weird noise, the mechanic will tell you how to fix it. Every reliable mechanic will find the same problem and prescribe the same repair. (It’s probably the rotary girder.) It’s not the same with us. When our amazingly complex, beautifully created bodies get a little out of shape, there isn’t always just one right solution. That’s why it’s wise and prudent to seek multiple opinions. We’ve learned that it’s absolutely imperative that parents advocate for the best care for their children. Nobody, other than the good Lord above, cares for your child the way you do. And so Tammy and I will continue to push and pray for the absolute best for Havyn.
At this point, unless we are convinced otherwise, we’re planning to proceed with bracing. She will get a new brace within a couple weeks and we can watch for several months to see what is happening with the curve. If it continues to progress, we can pick back up with the surgery plans.
Thanks for loving us so well and praying for Havyn!
Havyn has severe scoliosis. After multiple treatment methods, we had been told surgery is the only option. A new surgeon says we should try putting her back in a brace and maybe avoid surgery. This is surprising and exciting. Will you join us in praying for healing and wisdom? Rotary girder.