I need info about back surgery with rod insert for boys with DMD. Has it been successful for your child?

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My son had a great back surgery experience. Only in the hospital for 6 days.
Thanks so much for responding. Did he have much pain? How old was he when he had it done? How old is he now. Where did he have it done. Nice photo.

Tanya Fleming said:
My son had a great back surgery experience. Only in the hospital for 6 days.
I have no experience with this at this time, though I wanted to pass on that I've read some research about surgery for scoliosis. It provides a huge improvement for the respiratory system, which then contributes to better quality of life and life expectancy.
Thanks so much. I appreciate the info.

Liisa Underwood said:
I have no experience with this at this time, though I wanted to pass on that I've read some research about surgery for scoliosis. It provides a huge improvement for the respiratory system, which then contributes to better quality of life and life expectancy.
Hello Barbara,

I copied this from another posting on this forum after taking from an earlier forum, so it is a bit of a recycled post! Let me add that my son is 17, had the surgery almost four years ago and is healthy and happy today. The benefits include his being able to sit comfortably and good respiratory function. The surgery itself is scary to many, but the benefits are worth it from our perspective.

Brian

I first posted this on the previous PPMD Forum, yet think it sums up our experience.

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.

I hope this helps.

Brian Denger
I can't thank you enough for the detailed information. It helped us so much. I am glad it worked out so well for you all.

Brian Denger said:
Hello Barbara,

I copied this from another posting on this forum after taking from an earlier forum, so it is a bit of a recycled post! Let me add that my son is 17, had the surgery almost four years ago and is healthy and happy today. The benefits include his being able to sit comfortably and good respiratory function. The surgery itself is scary to many, but the benefits are worth it from our perspective.

Brian

I first posted this on the previous PPMD Forum, yet think it sums up our experience.

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.

I hope this helps.

Brian Denger
I meant to tell you that my son used to need to be turned frequently at night, but when he broke his arm in Feb. he began sleeping ini a recliner and does so much better. Only wakes up once or twice a night. Just an idea. I know it is tough not getting much sleep.

Barbara Speas said:
I can't thank you enough for the detailed information. It helped us so much. I am glad it worked out so well for you all.

Brian Denger said:
Hello Barbara,

I copied this from another posting on this forum after taking from an earlier forum, so it is a bit of a recycled post! Let me add that my son is 17, had the surgery almost four years ago and is healthy and happy today. The benefits include his being able to sit comfortably and good respiratory function. The surgery itself is scary to many, but the benefits are worth it from our perspective.

Brian

I first posted this on the previous PPMD Forum, yet think it sums up our experience.

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.

I hope this helps.

Brian Denger
They had him on pain medication. He was actually up in his wheelchair the next day. He never complained at all. I know he had to have pain, but he always said no...

Barbara Speas said:
Thanks so much for responding. Did he have much pain? How old was he when he had it done? How old is he now. Where did he have it done. Nice photo.

Tanya Fleming said:
My son had a great back surgery experience. Only in the hospital for 6 days.
They would not even put a brace on my son for that reason. I wanted one, but as it turned out he didn't need it. His Dr. knows his stuff.

Barbara Speas said:
I can't thank you enough for the detailed information. It helped us so much. I am glad it worked out so well for you all.

Brian Denger said:
Hello Barbara,

I copied this from another posting on this forum after taking from an earlier forum, so it is a bit of a recycled post! Let me add that my son is 17, had the surgery almost four years ago and is healthy and happy today. The benefits include his being able to sit comfortably and good respiratory function. The surgery itself is scary to many, but the benefits are worth it from our perspective.

Brian

I first posted this on the previous PPMD Forum, yet think it sums up our experience.

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.

I hope this helps.

Brian Denger
That is so amazing. Hope we have such luck. Thanks for sharing. It is very helpful.

Tanya Fleming said:
They had him on pain medication. He was actually up in his wheelchair the next day. He never complained at all. I know he had to have pain, but he always said no...

Barbara Speas said:
Thanks so much for responding. Did he have much pain? How old was he when he had it done? How old is he now. Where did he have it done. Nice photo.

Tanya Fleming said:
My son had a great back surgery experience. Only in the hospital for 6 days.
My son had the spinal stabilization surgery at age 18--we had hoped he would be one of the rare ones who wouldn't need to have this---but..... Not going into detail like the other accounts told, he did well with a morphine drip IV for 3 days. Starting an IV was not easy so he had 2 extra sites put in during the surgery while he was "out". Tylenol was not going to cut it; the Morphine PCA was great, even tho he could not push the button himself. Of course a parent was with him constantly.
Before the surgery they made the plastic brace "turtle shell" which he wore for about 2 months after. This shell, while somewhat uncomfortable, gave him great security that he would not be jostled or put into a hurtful position. Before the surgery he could feed himself and even sit on the edge of his bed. These were gone after the surgery, but remember he was 18 which is rather late for this surgery as the respiratory issues are greater as they age. There comes a point when it is irresponsible to do the surgery when there are greater respiratory issues.
My son is now 28 and works full-time as a software development engineer. He has never been in the hospital for pneumonia, which I think is partially due to straightening his spine. He also use a non-invasive vent. It was a hard surgery, but the benefits outweighed the pain. Good luck with your son as each experience will be different. Hearing all these accounts will help. Ann
Thank you so much for the info. It was very helpful. I am glad it went so well and that he is still doing well.

Ann Avery said:
My son had the spinal stabilization surgery at age 18--we had hoped he would be one of the rare ones who wouldn't need to have this---but..... Not going into detail like the other accounts told, he did well with a morphine drip IV for 3 days. Starting an IV was not easy so he had 2 extra sites put in during the surgery while he was "out". Tylenol was not going to cut it; the Morphine PCA was great, even tho he could not push the button himself. Of course a parent was with him constantly.
Before the surgery they made the plastic brace "turtle shell" which he wore for about 2 months after. This shell, while somewhat uncomfortable, gave him great security that he would not be jostled or put into a hurtful position. Before the surgery he could feed himself and even sit on the edge of his bed. These were gone after the surgery, but remember he was 18 which is rather late for this surgery as the respiratory issues are greater as they age. There comes a point when it is irresponsible to do the surgery when there are greater respiratory issues.
My son is now 28 and works full-time as a software development engineer. He has never been in the hospital for pneumonia, which I think is partially due to straightening his spine. He also use a non-invasive vent. It was a hard surgery, but the benefits outweighed the pain. Good luck with your son as each experience will be different. Hearing all these accounts will help. Ann

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