We took Bradley to the Pediatric Orthopaedist at St. John's Hospital in Springfield, Illinois on Monday, after the Neurologist at Cincinnati referred us for evaluation of Bradley's persistant right ankle pain and the bony abnormalties shown on X-ray. This group is also affilitated with Southern Illinois University-School of Pediatric Orthopaedics. The visit went well and we were very pleased with Dr. McGinty and her staff. She was very knowledgeable about Duchenne Muscular Dystrophy and really explained well what was going on in Bradley's ankle.
Dr. McGinty believes strongly that Bradley has Avascular Necrosis of both ankles, but the right is worse than the left, most probably because he has suffered trauma in the right ankle with the sprain 2 years ago. Avascular Necrosis means that bone death or breakdown is occurring as a result of lack of blood blood to the bones in the ankle. This is probably a result of long term steroid use. He has been on steroids for about 10 years for the treatment of his Duchenne Muscular Dystrophy.
In the ankle there is a talus bone. The top of this bone is called a talar dome because it is rounded or concave on top. His talar dome is almost flattened. The X-rays from Cincinnnati shows the tibia has shifted and is almost touching this flattened area of the talar dome. She did another X-ray of Bradley standing and bearing weight and it shows impingement is occurring when he walks. This means bone is rubbing on bone and this explains why he is having so much pain. The same process is occurring in the left ankle. He also has arthritis in his both ankles and feet.
We have 2 options, surgery or non-surgical treatment. She recommends trying the non-surgical intervention first which is to add more heel to his right shoe. This would relieve the bone on bone pressure that occurs when he walks. We purchased a pair of New Balance shoes and sent them to the Orthotist through the mail. She will also make Bradley's night splints ordered by Dr. Rybalsky from Cincinnati Children's Hospital.
Dr. Rybalsky wanted Bradley to have Serial casting to fix his heel cord Contractures if the ankle problem does not preclude him from it. Dr. McGinty did not recommend serial casting. It will actually be very painful and intolerable. We know this to be true since he hasn't been tolerating stretches very well in the right ankle. She told us to continue stretches but to use caution and not stretch beyond the point of pain.
She also explained the surgical procedure, which would be very extensive and painful. Because he has Duchenne, he would need to be up walking the day after surgery to prevent loss of ambulation. There is a possible risk that he could lose ambulation or get weaker. She explained that the surgery would involve scoping out and smoothing the bones. This would add more space between the bones that are rubbing together. She would also need to cut the tendon in the back of his ankle and add a tendon taken from the side of his foot to lengthen the heel cord.
Hopefully, the higher heel in his shoe will help and we won't have to do surgery. On the way home, Bradley told us if he has to have surgery he will walk the day after surgery no matter how painful it is, because he is not going to give up on walking. What a fighter!!
We are going to go back on May 4th, to see Dr. McGinty again and also to pick up the shoes and night splints from the Orthotist.
The ankle issue has been a long drawn out issue. The first orthopedist we went to did not even look at the CD of the x-ray that I had sent to him. He said he has not received the CD even though I called the week before and was told it was there. He also told us there was nothing that could be done for bony abnormalties. The second orthopedist didn't want to see him because he was a complicated medical case. That appointment was canceled the day before he was scheduled. I guess the third was a charm, because Dr. McGinty was so knowledgeable about not only what was going on in the ankle, but also about Duchenne Muscular Dystrophy.
