Doctor is recommending surgery even though Ryan's degree is only around 22 %. Should we wait ? He said that once it starts to curve it goes quickly and that
the sooner they do it the better while his lung functions are still strong. Any other considerations we should be thinking about before deciding on proceeding with the surgery?
Any advice as far as surgery goes and recovery process? any special equipment or PT we might need for after surgery?

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I had a 10-15 degree curve and it was left by the doctors but now its a lot worse as I cannot lay flat, it stopped me having a feeding tube, makes my breathing worse and my heart, my back hurts in bed and in my chair and I get nerve pain. I'm not saying this will happen but personally if I could go back to age 14, i'd have it done. Now i'm 25 and cannot have it done.
Hi,
My son is 23, he had a posterior spinal fusion at age 13. He went from a very slight curve of 12 % to 55% in 6 months. So at least in his case the curve did go quickly. I believe it was worth all that he went through afterwards. If you wait too long then it will not be possible to do the surgery and then you will have a whole host of additional problems to deal with.
As far as the recovery process, every boy/young man is different, but he will gain in height and you may need to have some adjustments made to his chair. It may also affect his balance in the chair but he will find a new balance point. There are other things that may be affected as well, some things will be temporary other things permanent.
Make sure the anesthesia concerns are addressed prior to surgery (if you go ahead) and also get good pulmonary and cardiac information ahead of time.
Good luck in whatever you decide. If you have specific questions let me know I would be happy to share our experience with you.
Katherine
Hi again,
The other thing I thought you might consider is to ask that his spine be x-rayed again in 2 - 3 months. That might give you a better idea of how quickly things are changing and buy you some time to get Pulmonology, Cardiology and Anesthesia all on the same page.
God Bless,
Katherine
My son had the surgery at 12 and I am very glad that he did. He sits up much straighter and has found his new balance point and is still able to feed himself. We did it in the summer so he was able to recouperate over the summer months. You do need a a hoyer right after as you can not lift him for awhile. We put a hospital bed ion the family room so he could watch t.v. Hope this helps!
Meggin
I am sitting in the hospital right now with my son. He had the surgery last Thursday. He went from 10 degrees to 45 degrees in one year. Heart and lungs are doing well, so we did the surgery now. It has gone wonderfully. He had heel cord surgery last fall and had tons of pain, etc. so we were a little hesitant about this surgery but it has gone great! I think its probably best to do it sooner rather than later. Feel free to check out his caring bridge site...starting with sept 6th journal entry i give lots of details. it is www.caringbridge.org/visit/dillongiesler
good luck. feel free to ask any questions. Sasha
Hello Donna,

For many boys once the progression begins the degree of the curve rapidly progresses. Think of a tree falling. It first starts slowly, then picks up speed. It seems like Ryan's doctors are exercising caution in the regard. Lung function is also an important consideration to watch.

A link to a similar discussion: http://community.parentprojectmd.org/forum/topics/1187424:Topic:876... I wrote a bit about my son's experience.

Best of luck with your decision.

Brian Denger
So glad your son's surgery went well. I visited your Caring Bridge page -- Dillon sounds like a neat kid!

Sasha Giesler said:
I am sitting in the hospital right now with my son. He had the surgery last Thursday. He went from 10 degrees to 45 degrees in one year. Heart and lungs are doing well, so we did the surgery now. It has gone wonderfully. He had heel cord surgery last fall and had tons of pain, etc. so we were a little hesitant about this surgery but it has gone great! I think its probably best to do it sooner rather than later. Feel free to check out his caring bridge site...starting with sept 6th journal entry i give lots of details. it is www.caringbridge.org/visit/dillongiesler
good luck. feel free to ask any questions. Sasha
just wanted to thank everyone for their replys to this post, We are seeing another Doctor in November just to get a second opinion. I guess it isn't so much the "if", but the when. I am getting 2 different responses from 2 different doctors on this. I just need to have a peace about this before we proceed.
We also have the decision on choosing a doctor. The one that we are supposed to see, we are military, doesn't have much experience dealing with DMD but has done numerous scoliosis surgeries on non DMD children. So do we go with him or should we ask to be refered to a doctor that has more experience in dealing with DMD children?
Nicks curve was about the same when we had him checked in Sept of 2006...by the time of his next check in December it was around 35% so we scheduled surgery for March of 2007. He had gotten a cold and his lungs had fluid in them so we had to postpone surgery and get a cough assist and heal him back for his May surgery...from that time frame he had progressed extremely fast where I was scared for his recovery and the surgery itself. He was 12. The x-rays were really freaking me out...he had his surgery in May of 2007 and even in recovery he said he could breathe better. I had never felt so good about making the decision to get that done.
I kept a notebook by the bed when we got home with times of meds, reactions, urine output, bowels everything. A home nurse checked on him every 3 or 4 days and Nick even said it wasn't that bad. He went thru a bit of depression as they lose some arm strength so I have to help him more with eating now.
They will make Ryan a turtle shell brace that he'll have to wear for 3-4 months...he'll be in the hospital for about 5-7 days and then it's all you...pain meds and playstation or x-box will get you thru it!!!
My son is 12 and his curve was 20% in February and is now at 53% 4 months later. He is scheduled to have the surgery on July 27th. We got a second opinion and the doctor doing it has a lot of experience with this surgery and DMD. They have to do anestesia differently so it is best to go with a doctor that has DMD knowledge.
Good morning!
Could you explain me about the aim of surgery? I'm from russia and i know only about for the surgery on the legs sinew. yoy write about back or i don't understand?
just an update to my post. Ryan saw orthopedics last week and his curve went from 22 to 34 degrees in 4 months. The doctor would like to do the surgery but feels like it is okay to wait a few months until the bulk of flu season is over so as not to expose him in the hospital to that. We are looking at Feb. i just am a little nervous about waiting that long but the doc seemed to think it would be okay.

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