Maggie, I am very hesitant to respond to this because our experience with this was so hard. Let me begin by saying, we know the agonizing feeling you are going through right now, we were there less than a year ago. We opted to have the surgery, because we believe that our son's future health depended on it. Our son had his surgery on Jan. 23rd of this year and his recovery was not going well. On Feb.13th, he was found to have a serious infection at the surgery site and had to be rehospitalized and opened back up for what was termed a clean-out procedure.He spent a week in the hospital and a couple of months on antibiotics entered through a port in his chest that led to nausea everytime they were administered. After the clean-out procedure, the surgeon told us that the infection was caught just in time and that he believed had it been another 24 hours later, Benjamin would have had an "irreversible event". Benjaimin is still experiencing pain, but it is getting much better. He can not feed himself anymore or take a drink without help, because the rods keep him from bending forward as he used to before the surgery.We don't tell you this to discourage you, we just wanted to prepare you. Looking back, we're not sure if we made the best decision, but it was the one the doctors said was in his best interest. We hope that maybe at some point we can look back and say it was the best decision, but right now we are very jaded by our experience. Benjamin was always in favor of his surgery, as his parents we were terrified. We hope others had a better experience than us and will respond, We can say that Benjamin is now doing much better and is starting back to school this fall. We hesistated to answer your request for input because we felt it would only give you more stress than what you already are experiencing, but after we discussed it among ourselves, we felt it unfair not to respond. We know we haven't made your decision any easier, but feel you needed to know our experience. We offer you our prayers and can honestly say we are so sorry you are having to make this very difficult decision. Tom & Cheryl--Benjamin's Parents
Hi Maggie! My son Josh(15) just had spinal fusion on May 8th. He spent a week in the hospital(2 days in the P.I.C.U) He was in pain the whole week in the hospital and about the week or week and a half after he came home, was completely off the pain meds. He had a few spots on his incision that took their good old time in closing, but he is all healed now. He has been doing Aqua Therapy for the past 3 weeks. His back pain is gone. He complained every morning before surgery about his back and after sitting in his chair all day at school, would complain of back pain. My son, ironically, wasn't worried about the surgery at all(at least he didn't admit to it) I was afraid because, well, it's surgery. And major surgery it is. But...for us, the pros outweighed the cons and we are happy with our decision. If you have any questions, please don't hesitate to ask.
Hi Maggie -- PPMD's Brian Denger has two sons with Duchenne. Brian's older son, Matthew, had Spinal Fusion Surgery in October 2005 when he was 13. Here is the link to a reply he wrote for another family about their experience that you might find helpful: http://community.parentprojectmd.org/forum/topics/dealing-with-my-b...