Jeffery has scoliosis and they recomended the spinal fusion. Is there anyone out their who knows about this. I'm terrified is this a goood idea.

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Comment by Dolly Beck on February 9, 2009 at 8:01pm
Hello Theresa,
My 16 yo son, Bryant, had spinal fusion surgery on Oct 1, 2008 and his went very similar to Brian's sons surgery. A few other things to be aware of; (1) wheelchair modifications post-surgery, we had to get a new joystick/tilt control because of lost shoulder/arm strength he could not access them anymore. A taller back with lat. "wings" and several misc. smaller items that all added up money wise and took a long time to get. Hoyer lift; we did not use one pre-surgery but have to use one now so as not to hurt him by lifting manually. He does not like it and I don't like it (uncomfortable and takes so long) but he weights 185 lbs. and I know my back won't hold out forever. We are using one out of the MDA closet but will have to buy our own soon...more $ out. (2) Be prepared for a taller kid. Bry "grew" 4 inches and now barely fits into our full size van. We literally have to push him over sideways a bit to fit thru the door and then right him when inside. That was not fun to find out 7 days post surgery in the hospital parking lot. (3) Complications - heaven forbid. It happened to us. Post surgery Bry had immediate and severe nerve pain in his rt. leg. He suffered for 9 weeks before I took matters into my own hands and found relief for him thru accupuncture. Twice a week for 4 weeks help him get over a real pain hurdle so he could start P.T. 6 visits by the home health PT got him back to school. The doctor/nurse practitioner gave no help other than offers of RX's (oxy & hydrocodone, valium, ambien, neurotin) none of which worked for Bry's nerve pain, only thing they DID do was make him very constipated. Good old prune juice is the magic bullet there. (4) Changes. For me, the hardest is Bry's step down on the independence stairway. Everytime there is a small grieving period.
On the upside, my son likes being taller and he sure does look better/healthier. He had good lung function before so do not notice any diff. there. The nerve pain ran its awful course and is 95% gone, he has hip pain but we continue with the PT at home so that helps and it feels good (well, not while I am doing the stretches but after).
That is a small slice of our experience, hope it is helpful.
Dolly Beck
Comment by Brian Denger on February 1, 2009 at 3:06pm
Hello Theresa,

There is no reason to be terrified about this procedure when you have a good medical team and appropriate information. My son Matthew had this surgery three years ago and is doing fine. The doctors look at a "window of opportunity" needed to do the surgery. They want to have lungs functioning at a healthy rate to improve recovery. Typically a Forced Vital Capacity (FVC) greater than 40% to 50% is recommended. Also, doctors begin to suggest surgery when the curve begins to reach 20% or greater. The doctors want to do the surgery before the respiratory muscles become too weak and the curve becomes too great to straighten. Failure to have the surgery can cause the body to become deformed to the point that the lungs are compressed on one side and capacity is compromised. Also, when this happens secretions pool in the lungs and are difficult to remove increasing the risk of infection and pneumonia. Another factor to consider is if surgery is not done the body becomes deformed making it more difficult for the patient to sit comfortably as the hips will move out of alignment and eventually the back will become so curved the individual will be tilted to one side or forward. Any of these positions will make sitting uncomfortable.

Before Matthew had surgery was unable to lift his arms and we too worried he would need help feeding himself. Three years later he is still feeding himself. His back is straight and he has good respiratory function.

Here's a brief synopsis of the procedure: The planning, pre-op and actual surgery takes much time. Tests are done to ensure proper cardiac and respiratory function. The doctors want the child to be healthy and not fighting a cold or other infection. Sometimes they suggest families may make directed blood donations as transfusions may be needed. Everything should be preparing you and your son for the day of surgery. We checked into the hospital the day before the surgery to be ready for the next very busy day. Eight hours of surgery is a lot for anyone, especially a child with DMD. Matthew's surgery was done in Shriner's Hospital by a doctor who had performed over three hundred fusion surgeries. One of us was allowed to stay in his room and the other stayed in a local motel. My wife Alice and I took time keeping vigil at the hospital the day of the surgery and also got away to exercise to help pass the time. Once surgery was finished we spoke with the doctor who gave us a description of his findings and how Matthew was. He described the procedure, any challenges and how well it went. They placed two rods in his back secured by screws and wires that would hold his spine in place until it all healed. Seeing Matthew post surgery was difficult. He was extubated and put on Bi-Pap and looked like he had been beaten up. His face was red and swollen and he was very uncomfortable and drowsy from the medications. We were very relieved it was over. The next few days we worked with the nurses caring for Matthew and helping him with breathing exercises primarily incentive spirometry. Learning how to move him was important to avoid twisting or causing pain. The time we spent with the nurses (24hrs daily!) was helpful. I strongly urge any family to take the time to learn how to care for their son so when his is home you are comfortable caring for him.

Once Matthew was home he was wearing a brace made at the hospital that encased his trunk. This was more protective than supportive and he stopped using it after several weeks. With the brace on Matthew was unable to move his arms much. Once removed he had more use. His power wheelchair has a removable tray that is about mid chest in height. When Matthews arms are on the tray he is able to pivot his forearms while also bending forward a bit to feed himself finger foods. He has adaptive forks and spoons which are bent at right angles so he his able to pivot them easily from his plate to his mouth. He even uses the fork to eat potato chips the few times he has them.

We are all glad Matthew had the surgery as his more comfortable and less likely to have respiratory infections.

Kids are very creative and are able to adapt to the changes they face.

I hope this is helpful.

Brian Denger

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