Hi all, my son corey16 and i have just gotten back from a week stay at westmead childrens hospital to find out that they say its in coreys best interest to get spine surgery done i am wanting to hear from any boys/men that have had it done and could tell me how they felt/feel about it wether or not your glad you had it done? the pro’s and cons of having it done? was it very painful? how long did it take to recover ? and i’d also like to hear the parents point of view!!! he’s also getting his feet done and i’m told the feet isn’t too bad to get done!! is this correct? thankyou nad hope to hear from you all soon colleen
Hi Colleen,
Although it’s been about 10 years, my son had the back and foot surgery done. I can tell you that it helped his quality of life allot. The recovery like any surgery had it’s ups n downs. I’m sorry that I don’t really remember how long it took for full recovery, but it really wasn’t that long. I’m sure with all they advancement in this field that the process is even easier now. Wish I could offer more.
I hope someone can chime in with more currant advise.
Take care and God bless,
Tim
Hi Tim, thanks for sharing that with me, the spine operation is the one that i’v always dreaded for him, it scares me but i’m trying to make it as positive as i can for him but i will let him make the choice for himself although he usually takes what i say and just goes with it but i think the last decision on this one can be his.
colleen
Colleen,
I had the spine surgery done when I was 12…I am 32 with DMD…after the surgery I felt like a new person. I don’t remember being in hardly any pain. Recovery was very short and I had to wear a brace for a few weeks. I am so glad that I had it done.
“Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.” Proverbs 3:5-6 “A word fitly spoken is like apples of gold in pictures of silver.” Proverbs 25:11
To: violinknight@hotmail.com> From: dmd-cpt8456@lists.careplace.com> Subject: [dmd] spine and foot surgery help!!!> Date: Sun, 6 Apr 2008 20:23:18 -0400> >
I am glad to hear that this surgery has benefitted you so well. I almost had to have that surgery but I wore a back brace from about 12-18 and that kept my curve from getting worse. My husband will be 32 Apr 30 and he never had this surgery so I had been concerned about recovery time and pain for boys with DMD who have been recommended to have the surgery. > To: bobertacollins@hotmail.com> From: dmd-cpt8456@lists.careplace.com> Subject: Re: [dmd] spine and foot surgery help!!!> Date: Fri, 11 Apr 2008 14:47:26 -0400> >
I discussed it with my sons dr way before any had a problem with their spine
(as well as these lists) and it isnt appropriate for their condition. If
they could, we wouldn’t all be doing the surgery but I totally understand
your reasoning. My older son, like your husband didn’t have a curve. I think
it depends on the situation, how bad the curve is and if it is going to be
affecting their breathing. Also it might depend on the cause of the curve.
My sisters kids had scoliosis but not very bad.
Terri mom of Nathan 20, DMD, ADD Christian 11, DMD, ADHD Alex 16, DMD
(3/29/91-4/2/07)
DMD = Duchenne Muscular Dystrophy
"The clock of life is wound but once, and no man has the power to tell just
when the hands will stop… At late or early hour… Now is the only time
you own…
Live, love, toil with a will… Place no faith in time, for the clock may
soon be still. ";
----- Original Message -----
From: “Ruby Cullet” dmd-cpt8456@lists.careplace.com
To: momdmd@comcast.net
Sent: Wednesday, April 16, 2008 9:59 AM
Subject: Re: [dmd] spine and foot surgery help!!!
I will be out of the office 4/17/08 & 4/18/08 . If this matter is urgent you may contact Delinda Dillahunt for assitance or I will respond when I return.
Thank you
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rofl
Terri mom of Nathan 20, DMD, ADD Christian 11, DMD, ADHD Alex 16, DMD
(3/29/91-4/2/07)
DMD = Duchenne Muscular Dystrophy
"The clock of life is wound but once, and no man has the power to tell just
when the hands will stop… At late or early hour… Now is the only time
you own…
Live, love, toil with a will… Place no faith in time, for the clock may
soon be still. ";
----- Original Message -----
From: “mike c” dmd-cpt8456@lists.careplace.com
To: momdmd@comcast.net
Sent: Thursday, April 17, 2008 7:11 AM
Subject: Re: [dmd] spine and foot surgery help!!!
sorry, I was lauging (rofl) at the part that the website deleted. (below.
Terri mom of Nathan 20, DMD, ADD Christian 11, DMD, ADHD Alex 16, DMD
(3/29/91-4/2/07)
DMD = Duchenne Muscular Dystrophy
"The clock of life is wound but once, and no man has the power to tell just
when the hands will stop… At late or early hour… Now is the only time
you own…
Live, love, toil with a will… Place no faith in time, for the clock may
soon be still. ";
----- Original Message -----
From: “mike c” dmd-cpt8456@lists.careplace.com
To: momdmd@comcast.net
Sent: Thursday, April 17, 2008 7:11 AM
Subject: Re: [dmd] spine and foot surgery help!!!
I will be out of the office 4/17/08 & 4/18/08 . If this matter is urgent
you may contact Delinda Dillahunt for assitance or I will respond when I
return.Thank you
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hi, I realise this must be the hardest decision for you. I remember when we had to choose as a family what the best thing to do was. I look after my brother (and am the main carer, i.e his parent). When we were confronted with that choice, it was difficult because he was at the age where his awareness of his condition and lifespan etc was limited. It was hard to explain to him that this may make his life live a little longer, when although he knew his life was shorter, he didn’t look at it in those terms. They looked at his lung capacity and said that it would be a pretty risky operation and they weren’t sure his lungs would make it through the anestheic, so that decided it for us in the end. But his curve did get pretty bad, and he ended up being bed ridden due to being unable to sit up (as his curve was so bad). I think he is a vary rare case, and that hardly ever happens, but it did make us wonder how different his life could be with the rod. I don’t regret the decision we made because being in hospital was such a trauma for him, that I couldn’t put him through an operation that would traumatise him, and with the risks involved, it was the right decision for us. But I just wanted you to know that without the rod, his curve did get pretty bad. It’s just hard to tell. I’ve also seen boys without the rod who manage perfectly fine. Most boys with the rods do live slightly longer, but then I didn’t want our brother to be restricted by this big rod, in the end he was more restricted without it. I think it’s restricting at first and a bit life changing, but can be worth it in the long run. I would just make sure you have lots of time and care available because it’s not a quick recovery and back to normal afterwards. I hope this helps in some way.