I am reposting something I wrote concerning my son's experience with spinal fusion surgery (His surgery was done 5 years ago.). Anytime anyone has surgery it is serious and this type of surgery is a long procedure. Things I recommend include speaking to the anesthesiologist about his/her experience with DMD due to the risk of malignant hyperthermia and what medications in the anesthesia to avoid (halothane and succinylcholine). You might also schedule an appointment with the cardiologist and ask about what plans can be made in the event that something does happen. Unfortunately there are few good options as the continued development of the curve is also detrimental to internal organs, heat and lungs included. Once the curve starts is continues at a rapid rate. The use of a bone graft is not always necessary. My son did not require a graft.
Best of luck with this surgery.
My older son, Matthew, had this surgery October 2005 when he was 13. Remembering that each boy is different I wanted to offer my perspective from his experience.
He had his surgery at the Shriner’s Hospital in Springfield, MA. The orthopedic surgeon had done around 300 back surgeries on children with many disorders including DMD making my wife and me more comfortable with the decision to go ahead. The time between learning he needed surgery and the actual surgery was about six months. We took time to ask others who had the surgery about their experience to prepare ourselves.
Two weeks before surgery we had pre-op testing, blood work, Cardiac and Pulmonary Function Tests to ensure our son was as healthy as possible and the surgeon had the information if things were “less than ideal”. There is a narrow window where decreasing lung function and increasing curve reach a point where many surgeons will not do surgery. Matthew’s lung function and other tests came back fine, yet it was still quite difficult for us to know our son would be undertaking such a major surgery.
The evening before surgery we checked in to the hospital, showered and prepared him for surgery and they did more testing to be sure all was O.K. The morning of surgery was difficult for us all. We understood the gravity of the procedure, yet realized the benefits. It took about five attempts to get in his IV due to contractures and small veins with a doctor deciding to place it in his foot as they do for infants. The surgeon came in and checked Matthew over on last time and my wife and I left to wait.
The surgery lasted just over eight hours. I went running, taking my cell phone and when I returned my wife went to the gym. Taking breaks is important for your sanity. The doctor called us in a short time after a nurse told us Matthew was in recovery. He explained everything went well. Matthew’s vertebrae were not brittle making attachments more solid and there was not as much fibrosis in his back muscles making the procedure easier. Still, Matthew had two rods, six hooks and ten screws inserted. Going to see him in recovery was also hard as he was on Bi-Pap and very uncomfortable.
Over the next few days we stayed with Matthew helping the nurses move, feed and care for Matthew. He was a very compliant patient and also didn’t need near as much pain medication as most children having the same procedure. I compare this to the time he had tendon release surgery and Matthew had less pain and while it was very different in other ways he had less pain with this surgery. We had been told he would have to stay ten days to two weeks, yet because we participated in his care and as Matthew did everything asked and didn’t need high doses of pain medicine we were allowed to go home after six days.
Matthew had to wear a plastic body brace for about two months, yet he developed a rash and the surgeon said he didn’t have to wear it as the incision had healed well. He returned to school after seven weeks. We did not have any problems with him being able to sleep. He had been getting me up four to six times a night and it was no different after surgery.
I know others have had less ideal experiences, yet planning and educating yourself and your son before the surgery helps prevent anxiety and makes it easier to deal with the whole process during and after. Matthew still is able to feed himself and his Pulmonary Function Tests have not decreases over the last three years. He sits straight and is more comfortable then before the surgery. So I will end by saying the procedure was very beneficial for him.
well I'm 27 and have dmd that surgery was very useful to my breathing and organ function i also used a donor's bone and had no problems...
my son is 13 and will be having this surgery in Feb.
My son Aaron had spinal surgery in 2004 when he was 14, his curvature was not as bad as your sons, Aarons was 21%, some surgeons like to wait longer, but his lung function was dropping so we went ahead and did it, my son had rods inserted on both sides of the spine, he did great thru the surgery, we hit a few bumps afterward with his lungs, but he recovered pretty quickly after that, my son's surgery did not use any donor bone from anywhere in his body, I never heard of that, but not all surgeons are the same, I would go to a surgeon who has alot of experience in this surgery and with boys who have DMD if possible, but not everyone can find someone, I would have the cardiologist and a pulmonologist involved also. Good Luck.
Hi Everyone, it is soo great reading your experiences. At least now I don't feel so alienated in my son's struggle with Duchenne. He is scheduled for his surgery early May. I am most worried about the type of medications that the medical team will put him on, despite their medical expertise. Somehow, every bit of experience counts to further our steps in dmd hospitlisation, etc. Can anyone assist me in obtaining the list of in-hospital drugs that's safe for his use, namely anaestesia, pain killers, etc.
Hi Linda, My son's surgery was postponed a few days before the surgery due to respiratory problems. My son had a sleep study and the results came back just before the surgery showing he needs night ventilation. His pulmonary doctor postponed the surgery 4 days before the surgery was supposed to take place. My son also had his tonsils and adenoids removed 3 weeks ago and I already notice a difference with his obstructive sleep apnea. He is sleeping better at night and I am glad they postponed the surgery to take care of these problems first. He will be in a safer position for such a long surgery. His surgery is scheduled for April 25th and I will keep everyone posted on my facebook status.
Parent project has a list of the safe medications and anesthesia to use for surgery on their website.