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.

Views: 1742

Reply to This

Replies to This Discussion

Hi donna,

 

 Thank you very much for this information. I am scared to death about this surgery. My son's heart has declined over the past 8 months and is enalrged. He also needs to go on night ventilation. I was hoping to have the surgery done before any problems with his respiratory and heart even started. Now we have to face this with both problems. He had his tonsils and adenoids removed 3 weeks ago and the surgery was only 40 minutes. It took the entire day for his respiratory and heart to stabilize. When we went home he caught a virus his sister had and was very sick and started with pneumonia while he was already on antibiotics. They had to give him steroids to help clear his lungs. I am scared of what will happen after a much longer and bigger surgery. He has a great team of doctors and I am praying we will get through this with no complications. He is starting bi-pap at home this Friday.

 I am very happy to hear Ryan is doing well. I wish you all the best and hope Ryan is recovering quickly.

 

Linda,

 

  My heart goes out to you!  It is heartbreaking for sure, what these kids have to endure.  Our son Travis will be 13 in about 6 weeks.  He just had the spinal fusion surgery, plus tendons shortened in both feet, on 05/25/11.  It was scary anticipating everything being described to me, and we had to have 100% clearance from his heart, lung, and MDA clinic physicians.  Our son is also mild MR, so he does not always understand the complexity of what he is going through.  We, unlike some, stayed at the hospital for the entire duration of the surgery which was about 6 hours, a few hours shorter than what was anticipated.  The first 1 1/2  hours were on his feet, and the remainder on putting the rods in his back, and a bone graft was taken from his hip.  The OR nurses called us "every hour" to tell us where they were in the surgery, and what was going on, which made us feel so much better, and more at ease.    He spent  several days in ICU being stabalized and off the ventilator.  He does have staples from his neck to his tailbone, instead of dissolvable stitches, due to having to finish up the surgery quicker than the surgeon had planned. 

We are now 3 weeks post surgery, at home, and doing great for the most part.  We still have casts on both legs and staples should come off tomorrow.  There is no back pain, or otherwise, and so far, no infection. 

 

I think as long as you make sure you have a surgeon that has had 'years' of experience, and the surgery is done while child is functioning on the high end pertaining to heart and lungs, and maybe still on a steroid, your chances of success are much greater.  If you are right there with him 24/7 in the hospital, and get him moving and using the cough assist immediately after surgery, he will probably do fine.  Please let me know if you decide to do the surgery.  I will be praying for your family ..... Jane

Hi Jane,

 

 We did go ahead with the spinal rod fusion. The surgery was scheduled for Jan 24, 2011, but was cancelled a few days prior due to pulmonary issues. My son's sleep study finally came back and i showed he stops breathing quite often throughout the night. He had to be put on bipap prior to surgery. He also had to have his tonsils and adenoids removed before the spnal rod surgery. He finally had the spinal rod fusion on 4-25-11. He went in to be prepped at 7:20am. Surgery started after 9am and he was in surgery until 7:20pm. It was the longest day of my life and I was really scared because of his pulmonary problems and he also has a very enlarged heart hat declined 2 times prior to he surgery. We made it through and the next few days were a nightmare. He was in sooo much pain and they would not raise his dose of pain meds due to his heart and respiratory. I was very upset because he was in much more pain than he should have had to endure.  We had some problems with the bottom of his incision and his past week it is finally looking better. His doctor was ready to go back in surgically due to a stitch from an inner layer came through his incison causing an absess and infection. Thank God we finally have it under control and surgery will not be necessary. Benedict is doing well and the pain is very little. He is very insecure and upset he is having a hard time feeding himself. I am hoping this will improve as he recovers. The incision problems delayed his recovery a little, but we are now working on slowly getting him in his own wheelchair. I am happy to hear your son is doing well and in no pain. I hope he continues to recover quickly. Thank you for replying. It helps talking wih ohers who are going through the same thing and understand. Please contact me anytime. I am on facebook as well. Sending love and prayers to your family! Linda

My son Tyler is 14 years old (DMD) and is scheduled for spinal fusion surgery on 06/23/2011.  We of course are very scared & worried.  His curvature is extreme (100 degrees).  His heart is still very good and lungs are o.k. but beginning to decline.  I was so glad to find a discussion regarding this surgery, just to know we are not alone in this struggle to keep our boys healthy and comfortable.  He is not very comfortable at all any more, so we are hoping this surgery will improve that.  We know after already facing hamstring & achilles lengthening surgery how tough this is going to be.  I was certainly not prepared for the pain he was in or for the complications he had after that surgery and this seems so much more serious.  I am very confident in this surgeon & the hospitals we will be at (these are different from the previous surgery, thank goodness) and I have read & printed all of the materials available on PPMD regarding surgery and anesthesia.

We are looking for lots of prayers and any more insight you all may have on pre & post surgery & recovery.  Thanks for being there!

Blessings,

Doriann 

Hi Doriann : )

 

As I stated in my above post, our son had this surgery on 04/25/11, and he had the  hamsgring and achilles lengthening at the same time.  There was much, much more pain from the feet and ankles, than the back!!  The first few days were a little rough on both of us, and being in the ICU, but once he was weaned from the respirator, things went uphill from there.  One thing we did was take our own cough assist which we had been using prior to surgery twice a day as a preventative measure.  So, we took our own to the hospital, and we used it on him there to keep him coughing every few hours.   Are you on Facebook?  Also here is my cell  405-227-3718, if you just want someone to talk to when you are scared.  The main thing is for you to stay positive, even if you have to leave the room temporarily, he will definately feed off of your emotions.  If he thinks you are scared, he will be too.  What hospital are you having his surgery done?

 

Jane
Doriann Myers said:

My son Tyler is 14 years old (DMD) and is scheduled for spinal fusion surgery on 06/23/2011.  We of course are very scared & worried.  His curvature is extreme (100 degrees).  His heart is still very good and lungs are o.k. but beginning to decline.  I was so glad to find a discussion regarding this surgery, just to know we are not alone in this struggle to keep our boys healthy and comfortable.  He is not very comfortable at all any more, so we are hoping this surgery will improve that.  We know after already facing hamstring & achilles lengthening surgery how tough this is going to be.  I was certainly not prepared for the pain he was in or for the complications he had after that surgery and this seems so much more serious.  I am very confident in this surgeon & the hospitals we will be at (these are different from the previous surgery, thank goodness) and I have read & printed all of the materials available on PPMD regarding surgery and anesthesia.

We are looking for lots of prayers and any more insight you all may have on pre & post surgery & recovery.  Thanks for being there!

Blessings,

Doriann 

Hi Doriann,

 

There is a group on facebook called spinal fusion before and after and many of the parents of boys who recently had the surgery and are about to have the surgery are on this sight. It has been a very helpful sight for me to ask questions of those who have already been through this. My son had the surgery 6 weeks ago and had problems with his incision on the botton due to a disolvable stitch from an inner layer not disolving and coming through his incision and causing an abcess and infection. His incision is finally closing and healing after 3 rounds of antibiotics. Another boy had many of the same issues as my son after his surgery and it was helpful getting advice from his parents. If you are on facebook you should join this group and please friend request me as well. I am here if you have any questions and I will be praying for your son.
I was scared to death, but we made it through. There were a very rough 4 days of extreme pain and then things slowly improved each day. Due to my son's heart problems they were not able to get his pain under control the first few days and they were no willing to increase his pain meds because of his heart. It took a lot of complaints to finally get his pain under control after 4 days of my son screaming and crying uncontrollably for hours at a time until he would fianlly pass out for 30 minutes and then he would be screaming again. It was a nightmare and I was shocked because the other boys who had the surgery before my son seemed to have much better pain control after the surgery. I am happy we are passed it and very happy we did the surgery. My son was 60% curved and he looks so much better now and I notice a difference in his breathing. He will be having a sleep study again soon to see what benefits the surgery had on his respiratory and I will post the results. Good luck and please let me know if you have any questions. Take Care, Linda  
Jane Davis said:

Hi Doriann : )

 

As I stated in my above post, our son had this surgery on 04/25/11, and he had the  hamsgring and achilles lengthening at the same time.  There was much, much more pain from the feet and ankles, than the back!!  The first few days were a little rough on both of us, and being in the ICU, but once he was weaned from the respirator, things went uphill from there.  One thing we did was take our own cough assist which we had been using prior to surgery twice a day as a preventative measure.  So, we took our own to the hospital, and we used it on him there to keep him coughing every few hours.   Are you on Facebook?  Also here is my cell  405-227-3718, if you just want someone to talk to when you are scared.  The main thing is for you to stay positive, even if you have to leave the room temporarily, he will definately feed off of your emotions.  If he thinks you are scared, he will be too.  What hospital are you having his surgery done?

 

Jane
Doriann Myers said:

My son Tyler is 14 years old (DMD) and is scheduled for spinal fusion surgery on 06/23/2011.  We of course are very scared & worried.  His curvature is extreme (100 degrees).  His heart is still very good and lungs are o.k. but beginning to decline.  I was so glad to find a discussion regarding this surgery, just to know we are not alone in this struggle to keep our boys healthy and comfortable.  He is not very comfortable at all any more, so we are hoping this surgery will improve that.  We know after already facing hamstring & achilles lengthening surgery how tough this is going to be.  I was certainly not prepared for the pain he was in or for the complications he had after that surgery and this seems so much more serious.  I am very confident in this surgeon & the hospitals we will be at (these are different from the previous surgery, thank goodness) and I have read & printed all of the materials available on PPMD regarding surgery and anesthesia.

We are looking for lots of prayers and any more insight you all may have on pre & post surgery & recovery.  Thanks for being there!

Blessings,

Doriann 

Dear Jane & Linda,

Thanks so much for your honest input and your prayers.  I will check out the FB group as well as keep you updated here on PPMD.  I really appreciate your help & will stay in touch.

Blessings,

Doriann

 

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service