Greetings to all; I hope everyone's day is going well.

We just found out our son, Ben, needs spinal fusion surgery, and I dread the thought of putting him through such a massive ordeal.  Has anyone refused this surgery and if so what was the outcome and would you have handled it differently in retrospect? 

Man, It's true what they say about the stops on the road of progression with this disease.  For me it's always like the day he was diagnosed.

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To follow up on my last, his orthopedic surgeon will be Dr Rathjen, at Scottish Rite here in Dallas, TX.  If anyone has dealt with him, that information would also be appreciated. 

We did not with our two sons, but that was 12-13 years ago. I believe they have gotten much better with this surgery as another boy we know had it and it was very successful and he sits up nicely. They did not want to lose the ability to feed themselves at the time.

If you choose not to, be prepared for effects of the scoliosis. It is amazing how twisted the body can become. It is not painful but makes positioning difficult.

The key for us has been adopting non-invasive ventilation. As soon as he starts becoming restless at night and has headaches, get a BiPap. It made a huge difference on how they felt during the day.
We have never gotten hung up on questioning past decisions.

Thanks for the information, Mortman (this is Brett, by the way; my wife was already signed in, so I'm writing under her nom de plume).  

The doctor's recommendation for this surgery was a surprise for us, because Ben is not demonstrating any significant spinal curvature that I can tell.  We had hoped, as we'd been told, that the Deflazacort would prevent the scoliosis.  Were your boys on Deflazacort?

After the surgery was recommended I researched this site for information from those who had experienced it.  You mention, as did others, that the surgery can greatly affect arm use.  Is this common with this surgery?  Ben's doctor didn't mention it.  

Ben is 14, and he's been on bipap for several years.  

The disease has affected Ben's cognitive abilities, so he can't decide for himself whether or not to have the surgery. The ball is completely in mom's and my court.  I dread the thought of putting him through it, especially if he loses the use of his arms.  He doesn't understand the severity of the disease, and coming out on the other end not being able to use his arms would devastate him.    

I just don't know what to do.   



Mortman said:
 

Thanks for the information, Mortman (this is Brett, by the way; my wife was already signed in, so I'm writing under her nom de plume).  

The doctor's recommendation for this surgery was a surprise for us, because Ben is not demonstrating any significant spinal curvature that I can tell.  We had hoped, as we'd been told, that the Deflazacort would prevent the scoliosis.  Were your boys on Deflazacort?

After the surgery was recommended I researched this site for information from those who had experienced it.  You mention, as did others, that the surgery can greatly affect arm use.  Is this common with this surgery?  Ben's doctor didn't mention it.  

Ben is 14, and he's been on bipap for several years.  

The disease has affected Ben's cognitive abilities, so he can't decide for himself whether or not to have the surgery. The ball is completely in mom's and my court.  I dread the thought of putting him through it, especially if he loses the use of his arms.  He doesn't understand the severity of the disease, and coming out on the other end not being able to use his arms would devastate him.    

I just don't know what to do.   

I am sorry that you have to deal with the additional complications and full responsibility for the decision.

Deflazacourt was really not easily available 20 years ago, so no steroids.

They do not lose their ability to use their arms per se, the distance to their mouths becomes too great for their limited arm strength.  No bending into it.

Well, that's a relief. I was reading too much into what others were sayin about it. Thanks again, Mortman, for taking the time to respond. You've help ease our mind's. All the best to you and yours.

Hi, My step-son is 20 years old with DMD. He has never been on steroids. He only started BiPAP ventilation last year and does not have a feeding tube. He decided not to have the spinal surgery in his teens. He was very afraid of the pain of surgery, the recovery, and "not waking up". He does have severe scoliosis now. He does experience positional pain, nerve pain, and very limited range of motion in all of his joints-limbs, neck, and hips. But, he can easily be positioned in bed and for dressing because he can "bend" at the waist. He only lost the total ability to use his arms and hands (for more that his wheelchair joystick and using his Apple TV remote) last year at 19 years old. The decline of use of his hands was gradual. He stopped playing video games at about 16 yrs old. Writing and drawing and feeding himself with assistance maintained until he was 19 also. He would lean forward resting on a lap top tray in his chair for writing and eating. This may not be possible with spinal surgery. I do know that as young men get older and if they want surgery, their heart and breathing have to be in an appropriate range in order for them to endure the anesthesia, so this might be a consideration. He says he does not regret his decision. Hope this helps. -Ann

Thank you so much, Ann, for the information. All our best to you and your family.

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