My  12 year old son with Duchenne needs spinal rod surgery. He now has a 40% curve since his last x-ray  8 months prior, which showed his spine was straight. It happened very quickly. Can anyone tell me their son's experience after this surgery and anything I should know or do before scheduling the surgery. I am scared to death about this surgery. A few months ago we learned my son's heart is enlarged and dropped to the low range of 26. I am very concerned about his heart and what can go wrong during this surgery with the heart. His cardiologist said to schedule the surgery and she will re-test his heart 2 weeks prior to the surgery to make sure there are no changes. She feels his heart is string enough for the surgery. I am still scared and wish my son didn't have to go through his.

 I read they need to take a piece of the child's hip bone to fill in the spine or donor bone can be used. Did anyone use donor bone and did it work. I read the child's bone works better, but there are some doctors that use donor bone and I have not seen anything saying the donor bone does not work.

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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.

Susan
Linda,

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.

Brian Denger


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.
Thank you Brian, This helped me greatly and I know in my heart this surgery is necessary so my son can have a better quality of life. I sat down with the surgeon yesterday and he will be scheduled for surgery in January. I feel really good about the surgeon and his team. I was very happy to hear he uses donor bone to fill in the spine. I read many things online about the surgery and they must have been older procedures that were used. Thank you again. I feel a little better and I know this is what's best and I am hoping and praying for the best. Take Care, Linda

Brian Denger said:
Linda,

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.

Brian Denger


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.
my son is 13 and will be having this surgery in Feb.
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...
Hi Tim, Thank you very much! It really helps knowing that those who have DMD feel the surgery was helpful and well worth it. I sat down with my son's surgeon and was relieved to hear he uses donor bone. Take Care, Linda

Tim McLaughlin said:
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...
I wish your family and your son the best. You are in our prayers and I hope all goes well. My son will be having the surgery in January. Please let us know how your son is doing after the surgery. Take Care, Linda

donna said:
my son is 13 and will be having this surgery in Feb.
Thank you Susan !!

Susan Robertson said:
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.

Susan
hi linda, i just wanted to check in and see how your son's surgery went. We are looking at this surgery happening within the next six months. How did it go?

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.

 

Regards

Pam

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.

 

Hi Pam,

 

Parent project has a list of the safe medications and anesthesia to use for surgery on their website.

 

Take Care,

Linda

 

Ryan had this surgery feb 7th. Prior to surgery he was seen by pulmnology, cardio, ortho, and anestesiologist. They were all very aware of dmd and the special precautions to take. Ryans surgery lasted 5 hours then it was another hour in recovery before we could see him in icu. We were very surprised at how he looked. he was on bi-pap not liking it very much either. He did have a reaction to one of the pain med. but they were monitored so closely in icu they were able to care for that right away and switched him to a different med. Ryan was in icu for about 12 hrs and was stable so we were moved. to a reg room. We were very thankful that the room had a ceiling lift .  ryan was on a morphin pump, toridol, and some kind of anti nausous med. With Ryans surgery they used what they call donor bone because of the dmd they don't use the childs bone. everything went well and now we are 7 weeks post surgery. I do have to tell you the first 2 weeks were very  difficult  both physically and emotionally for Ryan and for us.

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