By Dorette Clemons
My daughter, Dana, is 12 years old and has Merosin Negative Congenital Muscular Dystrophy. For the past several years she has had numerous x-rays of her spine to monitor any changes with her scoliosis. About a year ago her orthopedic specialist decided it was time for a second opinion. He was weighing the possibility of performing an anterior and posterior spinal fusion surgery before Dana’s crooked spine started affecting other organs within her body, such as her heart, lungs and bowels.
This was not something that was discussed lightly, or overnight. It was a long process of more x-rays, tests and consults with each of her other specialists to ensure that she was physically and medically able to withstand such a surgery.
After several months of appointments and coordinating doctors’ schedules, we finally set a date for end of July 2010. The surgery would take about ten hours, if all went well. Hospital stay was said to be up to two weeks.
I don’t think that we fully understood how extensive this surgery was going to be, at least not at that time. Yes, we knew the plan was to go ahead with front and back spinal fusion if bleeding was limited and Dana was doing well enough. I guess it’s hard to prepare yourself for how it’s all going to be once the surgery is finished. As we soon found, the weeks ahead would be the really hard part.
Dana made it through the first part of the surgery with flying colors. The doctors went through the front left side first, removing five discs and part of a rib, all to be fused together so that no further curving could occur in the future. They then proceeded to the back, inserting the rods and wires from the back of her neck all the way down to the top part of her bottom. She was in surgery a total of about nine hours.
All went well as far as her needing only four units of blood, which we had banked ahead of time. One of the biggest concerns with sedation and surgery in children with Muscular Dystrophy is getting them off the ventilator quickly enough after surgery. Dana did very well and came off the vent with no problems before we even saw her in recovery.
I think one of the biggest factors to deal with over the first couple of days in the hospital was pain control. Dana could never seem to get to where she wasn’t crying in constant pain unless she was sedated enough to sleep. And with that came the scare of her stats dropping, requiring oxygen to get her stats back up. It was such a struggle to get her comfortable enough to get any rest at all. But as days progressed, so did she. She was and is an amazingly strong-willed little girl.
We spent a total of eight days in the hospital. At first I was terrified at the thought of bringing her home too soon, still in so much pain. But by the seventh day I was feeling more comfortable with the idea of taking her home, knowing that at that point, there wasn’t anything being done at the hospital that we couldn’t do for her at home. I WOULD, however, recommend that anyone having spinal surgery make sure that there is a hospital bed set up at home by the time you are released from the hospital. It makes it so much easier for repositioning, rolling and lifting as needed. Another helpful item would be a bedside commode, to avoid having to transfer the child.
It’s been six months now since Dana’s surgery. She is doing very well. However, she has not yet regained what little upper body strength she had. It’s as though she feels top heavy, and can only support herself by propping up her feet to support the rest of her body weight. And propping her feet up in this manner has caused problems with her hip contractions. They are much tighter now, and more PT is needed.
Her back looks and feels good, very little soreness on the incision area in the back. But her side is still very sensitive to the touch. I have been massaging vitamin E oil up and down and across her incision area every day, which has helped smooth and make the raised scarring less noticeable. This was recommended by her OT.
Her doctor says to give it a year. Whatever strength, sensitivity, or numbness she still has at that time, she will probably always have.
I don’t think I truly comprehended, until the last visit with the surgeon, that due to the front spinal fusion Dana’s middle/trunk area will no longer grow. But, she will no longer require additional surgeries and will no longer experience any curvature of the spine. And while most people who have rods placed in the back will eventually have to have some outpatient surgery to extend those rods, Dana will not.
Yes, the surgery was extremely tough on her, as they did both at the same time. But thinking back, I’m glad that this was the decision we made, and that she won’t have to go through with more surgeries to keep extending the rods as she grows. Just remember that it IS a long, tough road for the first few weeks, but with each day things will begin to progress and make it all worthwhile.