Does anyone have advice on spinal surgery for our boys with DMD!

I have a friend in Florida with a 16yr. old son with DMD and the doctors have said he needs to have the spinal surgery and she wanted advice or opinions from anyone who's son might have had this surgery done already. Thank You!

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We are in Denver, CO. and our son Ian had the spinal fusion surgery last summer, when he was 16. He came through it very well.
My advice would be to ask a lot of questions. I felt a lot better after learning more about the anesthesia he would be given and how it would be monitored. We also were able to talk to the anesthesiologist a couple of times. It gave us peace of mind to know that this person would take care of Ian.
Try to get some rest yourself before the surgery, because as a cargiver, your job will be somewhat increased. It's really important to take care of yourselves too.
He'll be in ICU after surgery, that is normal. They usually just feel more comfortable monitoring them more closely.
Try to take breaks during your stay at the hospital. I found that to be hard, but turned out to be a good thing in the end. We had some other family members sit with him while we were able to get some rest.
Let us know if you need anything else.

The Horan Family
Denver, CO.
So only 1 of 3 sons needed the surgery? Are you happy with the results?

Kimberley Weber Horan said:
We are in Denver, CO. and our son Ian had the spinal fusion surgery last summer, when he was 16. He came through it very well.
My advice would be to ask a lot of questions. I felt a lot better after learning more about the anesthesia he would be given and how it would be monitored. We also were able to talk to the anesthesiologist a couple of times. It gave us peace of mind to know that this person would take care of Ian.
Try to get some rest yourself before the surgery, because as a cargiver, your job will be somewhat increased. It's really important to take care of yourselves too.
He'll be in ICU after surgery, that is normal. They usually just feel more comfortable monitoring them more closely.
Try to take breaks during your stay at the hospital. I found that to be hard, but turned out to be a good thing in the end. We had some other family members sit with him while we were able to get some rest.
Let us know if you need anything else.

The Horan Family
Denver, CO.
I agree with Kimberely's advise below. I would add that you should also make sure that your friend in Florida with the 16yr. old also has current cardiac and pulmonary information on her son prior to the surgery. He will probably "grow" during the surgery and be taller once it is done, so there may also need to be adjustments to his powerchair to accomodate the growth. He balance points will probably change as well so it will just take some time for him to adjust.
Katherine :-)
Hi I have two sons one is 24 one is 21, the 24 year old had spinal fusion at 16, There are alot of things to consider, in the long run I think it will help avoid alot of positional and breathing problems. The original surgery went well my son was not on a vent at that time, unfortunately somehow he had an infection that adheared to the rods. After the second surgery to flush out the infection he lost his ability to breath on his own, three months later living ICU waiting to set up nursing we finally got out. Everything was looking good till about one year later the infection had reapeared and we had to remove the rods to get rid of the infection. The fusion worked well except for the area of infection and now without the rods he has sever sculiosis. My younger son never recieved the surgery thogh I think if we wouldn't have had so many problems we would have, His sculiosis is sever and he has problems with his hip and ribs. Even with all that I think if you have a good doctor that is aware of the complications I would do it again. Also you need a really good anetheseologist, its a 7 hour surgery and they really hold there lives in there hands. Also you can't wait to long because the longer you wait the harder it is.

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