Hi- I want to share my daughter's story, she is 15 and has really been through a hard time. She had rods put in April 5, 2011. She had an s-curve that had recently been discovered and was too far gone to brace. She scored very low on their risk scale so chances of continued progression were high. Her surgery was not without complications as she developed a post-op ileus and ended up in hospital for two weeks until she could tolerate food again. She had fusion fromT2-L3.
She returned to her soccer and swimming teams within a year. She has always been very athletic. Over the past 9 months she started suffering debilitating muscle spasms under her shoulder blade. Never given anything but muscle relaxers and rest. She would gradually get better and go back to swimming. In April this 2013 she again started having spasms. After medications, rest and two weeks of p.t. Electrical stimulation therapy did not help (she also had swelling) it was decided that the culprit was probably her rods or other hardware. Surgery for the removal was scheduled for May 14.
Surgery went well except for the fact that she vomits horribly after for hours and hours. The doctor said the rod was rubbing against the bone because she had no fat pad. That definitely would cause the pain. After three days we were sent home. She seemed great. After two days home she started having unrelenting pain again, but in a different area than before. Now it was her lower back. After consulting with her doctor it was decided to readmit her to the hospital for the pain team to work with. She was given a lot of meds to treat the pain from many angles. She was never examined or even x-rayed. After three days it was some better but not great. At that time her surgeon suggested to both of us that it might also be emotional teenage girl. We were in the process and moving and changing schools. I decided to give benefit of the doubt that that may be a contribution factor. Although my daughter is not your teenage drama queen. Her pain was reasonably controlled so we left after three days inpatient.
She continued on the pain medications as directed and was given a taper off schedule to do over two to three weeks. On May 31 we had a follow-up appointment. She still complained of pain in her mid-back radiating to her hip. She did receive her follow-up x-ray and was given the all clear. She would gradually be allowed to start slow stroke easy swimming at this point. Other activities as tolerated.
By mid-June she had tapered off the meds or was very close. Still complaining of back pain. The week of June 20 she really was tender under her bra strap. On Saturday June 22, she had fluid and swelling under and around her incision. I contacted her surgeon who said it was most likely a seroma that could be drained if it did not resolve. I was in a spot because we were leaving on Wed. The 26th for two weeks at the beach. The surgeon was out of clinic until that day. He suggested we could see someone else in his office and they would call him if he was needed. We ended it there.
On the 23rd, she slipped and fell on her butt on the stairs.
On the 24th, I called to request an appointment and we were scheduled to see the PA (the surgeons's PA) the next day. We explained all symptoms - the fluid, the swelling, the pain radiating to her hip AND the fall she just had. The PA decided NOT to x-ray. He figured it was the weaning off pain meds causing the pain. He figured the swelling and fluid would resolve. He told her not to swim, but she was given no other restrictions. We left for the beach the next day.
At the beach she did the best she could to have fun. He could hardly sleep at night. Couldn't lie on her back or side. She just kept going as much as she could. Upon return from the beach we scheduled an appointment with her doctor again. This time she actually emailed him to tell him about her pain. Although she kept saying hip. I explained to her surgeon that it was not really the hip, but still her back. We called on Monday July 8. We were give an appointment for July 12 at 9.
We arrived and he examined her. He pulled up her before May 14 x-rays and the May 31 x-rays and notices that there was a problem with T11-T12. Where there was previously a zero degree curve there, there was now a 23 degree curve and what looked to be a crack in the posterior fusion. He asked me of the May 31 x-ray he was looking at was the one the PA had taken. Shocked, I said "No, the PA did not take one- that is he x-ray you took at the follow-up visit."
We proceeded to get new x-rays that showed the curve had progressed in six weeks to 35 degrees. There still appeared to be a crack. We decided to do a CT to look just at T10-L1. This was scheduled for an hour and a half later. We were told to go eat and get the CT done. We were told he would call us.
At 3:30 the doctor called to tell me she had a fracture through the T12 vertebra. Also both pedicels were broken into pieces. He suspected pedicals broke when she fell. But the crack and subsequent falling over of her spine started before May 31 since it was in that X-ray. He told us this was a progressive problem now and would need to be corrected by inserting rods again. My daughter was hysterical. The doctor told me t was necessary or she would become paralyzed as her spine continued to fall over. This was a Friday. Surgery was scheduled for the following Tuesday. He told me to put her on bed rest and told me not to get in any accidents as nothing was protecting her spine. Why I didn't insist he admit her I will never know.
She had surgery AGAIN on July 16. Rods from T10-L2. They had to totally skip over T12 as there was nothing to screw into (they screw into the pedicals). The surgeon told us her spine had a big break in the previous fusion. She was literally walking around for weeks with a terribly unstable spine. He said she would have to wear a brace this time whenever she is up since he is afraid the other parts of the previous fusion might break. Even though he ha previously told us the fusion was great and there was no way this could happen. Not as confident this time. He had never seen this happen.
Relief turned to anger at the situation. Why was this missed? Why didn't they x-ray when she had such a painful episode in May that she had to be admitted? Why did no-one notice the vertebra changes (0-23 degrees) and the small crack on May 31? Why did the PA NOT x-ray a child with pain, swelling, and a fall? Why did no-one think to put her in a brace after the first surgery to remove the rods- just to be sure the two year old fusion was good? The x-rays and visual inspection were not reliable.
My daughter has suffered a great trauma. She feels like we all let her down. She wasn't an emotional teenager. She was a child in pain who knew her own body. She sucked it up when she was told to do so.
The adults were wrong,
Take from this story what you will. I wish I had questioned more and pushed a bit harder. I think the surgeon was a bit egotistical and felt that what he had done had fixed her initial problem of pain and that any other issues were to be ignored or blamed on a teenage girl. Advocate for your child and go with your gut. Make the professionals listen to you. Go somewhere else if they don't.
Contact me if you have comments or questions you don't want to post.