My son is planning on having the spinal fusion surgery here in the next few months.  I was wondering what other parents sons have already gone through this and what your thoughts are on the pros and cons.  I'm really nervous to have this done, as I hear it's a very long surgery plus a long recovery.

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Hello Holly,

I am adding comments I wrote a number of years ago about this topic related to my son's surgery.  My family and I believe the surgery was well worth it for a number of factors including maintaining comfort while seated and helping with lung function.  Yes, the surgery is long, some guys have a difficult recovery, but scoliosis leads to decreased lung capacity and may lead to back and hip pain.  There is a window of opportunity in which doctors will do the surgery related to respiratory function and degree of curve.  Speaking with other parents and doctors can help you as you decide.  Matthew's story begins below:

Brian


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 decreased 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 for your reply.  I do really appreciate the feedback.  It's confusing to just hear the pros and cons from a doctors point of view. Having an actual parent who has gone through the surgery already is a very helpful insight.  We are coordinating now with Shriner's Hospital here in Salt Lake City to schedule the appointment.

 

Thank you again and Good luck to you and your family!

 

Holly ~

If you are on facebook you can request to join this group. It is all about boys with dmd and spinal fusion surgery before and after.

 

 

https://www.facebook.com/groups/104495566301538/

Hi Janine,

Thank you for the recommendation on the FB group.  It has a lot of helpful information. 

 

I am so pleased with my son's spinal fusion surgery.  It was a rough recovery at times, but he's back in school full tme, sits much easier and straighter in his power chair, and is sooo much happier.  :)

I would definitely recommend this surgery to anyone who is thinking about it in the near future for your son's. 

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