We have been advised that it is the ripe time to perform muscle release surgery for our son. The hip, knee and ankle muscles will be affected. This seemed traumatic at first. The after effects are worrying us, also the surgery is said to prolong walking and standing anywhere between 1 - 2 years. How worthwhile is it is on our minds. Musty just recieved his Power chair which we were encouraged that he use at school. We seem to be getting mixed messages and we want to make the right decisions. what are your thoughts? Troubled mum.

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Where do you live and what doctors are recommending this?
Have you read the CDC Care Considerations that was posted recently. If not the link is below. They do talk about this subject on the second part/page 2.

http://www.parentprojectmd.org/site/DocServer/120409Lancet_Neuro_on...
Lina,

The CDC has put together a Care Considerations document for Care and Management of DMD. To read this document go to: http://www.parentprojectmd.org/site/DocServer/120409Lancet_Neuro_on...

Part Two of this document concerns "Implementation of multidisciplinary care". On the second page of Part Two there are recommendations for "Surgical Indications for Lower-Limb Contractures". I strongly encourage you to read the information and to also share this with your son's clinicians.

Each child is different and there are no one size fits all set of rules, yet there are evidence based standards and the CDC Care Considerations is the first attempt to put together a structured document outlining appropriate therapeutics for DMD.

Brian Denger
Hi Lori,

We live in Sydney , Australia. The Dr concerned is Dr Matthias Axt, our physiotherapist recommended surgery too. But of course the decision is ours in the end. This particular Dr has a one year waiting list in which time we may be in Lebanon. Too many decisions! Thanx Lina.

Lori Ware said:
Where do you live and what doctors are recommending this?
Hi Janine,

Thanx I will surely look it up.

Janine said:
Have you read the CDC Care Considerations that was posted recently. If not the link is below. They do talk about this subject on the second part/page 2.

http://www.parentprojectmd.org/site/DocServer/120409Lancet_Neuro_on...
Hi Brian, I will surely look this up and hopefully it will help us make the best decision thankyou.

Brian Denger said:
Lina,

The CDC has put together a Care Considerations document for Care and Management of DMD. To read this document go to: http://www.parentprojectmd.org/site/DocServer/120409Lancet_Neuro_on...

Part Two of this document concerns "Implementation of multidisciplinary care". On the second page of Part Two there are recommendations for "Surgical Indications for Lower-Limb Contractures". I strongly encourage you to read the information and to also share this with your son's clinicians.

Each child is different and there are no one size fits all set of rules, yet there are evidence based standards and the CDC Care Considerations is the first attempt to put together a structured document outlining appropriate therapeutics for DMD.

Brian Denger
My son had just the ankle tendon release surgery when he was 10 and not walking. At age 29 his ankles are still in fine position to wear shoes, but only because he always wears AFO's. You can tell which boys had the surgery and faithfully wore their AFO's by about age 18. Otherwise the feet are twisted and they cannot wear regular shoes. However, since the surgery, my son's feet are very sensitive now. I would not have hip or knee surgery for my son. I would be afraid of pain down the line, as this is what happened to a young man we knew who had all 3 procedures. He had to constantly take pain killers. My son's knees are contractured in a bent position, but that is fine for wheelchair use and we just put a small pillow under each knee as he lays in bed. I have no experience concerning if these procedures might prolong walking, but even if they had I don't think the pain involved would be worth it. These are just my opinions from personal experience and I am not a doctor.
Thankyou Ann, your opinion based on personal experience is very valuable to me. We have opted not to have the three point surgery but the ankle surgery is very likely. My son is ten he is still walking and mobile and he does not wear AFO's. Dr's have told us that the surgery is better done earlier while there is still mobility so we are now looking into that before deciding 100%. Thanks once more for your response.

Ann Avery said:
My son had just the ankle tendon release surgery when he was 10 and not walking. At age 29 his ankles are still in fine position to wear shoes, but only because he always wears AFO's. You can tell which boys had the surgery and faithfully wore their AFO's by about age 18. Otherwise the feet are twisted and they cannot wear regular shoes. However, since the surgery, my son's feet are very sensitive now. I would not have hip or knee surgery for my son. I would be afraid of pain down the line, as this is what happened to a young man we knew who had all 3 procedures. He had to constantly take pain killers. My son's knees are contractured in a bent position, but that is fine for wheelchair use and we just put a small pillow under each knee as he lays in bed. I have no experience concerning if these procedures might prolong walking, but even if they had I don't think the pain involved would be worth it. These are just my opinions from personal experience and I am not a doctor.
Have you spoken with Helen Posselt? She is the worlds leading PT on DMD and lives in Australia. Helen is great to respond by email at helenposselt@ozemail.com.au. She normally responds quickly unless she is "out in the bush". Good luck! I know this is a hard decision.

Lina El Saddik said:
Thankyou Ann, your opinion based on personal experience is very valuable to me. We have opted not to have the three point surgery but the ankle surgery is very likely. My son is ten he is still walking and mobile and he does not wear AFO's. Dr's have told us that the surgery is better done earlier while there is still mobility so we are now looking into that before deciding 100%. Thanks once more for your response.

Ann Avery said:
My son had just the ankle tendon release surgery when he was 10 and not walking. At age 29 his ankles are still in fine position to wear shoes, but only because he always wears AFO's. You can tell which boys had the surgery and faithfully wore their AFO's by about age 18. Otherwise the feet are twisted and they cannot wear regular shoes. However, since the surgery, my son's feet are very sensitive now. I would not have hip or knee surgery for my son. I would be afraid of pain down the line, as this is what happened to a young man we knew who had all 3 procedures. He had to constantly take pain killers. My son's knees are contractured in a bent position, but that is fine for wheelchair use and we just put a small pillow under each knee as he lays in bed. I have no experience concerning if these procedures might prolong walking, but even if they had I don't think the pain involved would be worth it. These are just my opinions from personal experience and I am not a doctor.
Hi Lori, we live in Sydney Australia. A surgeon named Dr Matthias Axt is recommending the surgery with the support of my sons Nuerogenetic team too. The surgeon is from Germany and he claims that there they conduct the surgery much earlier in a childs life than here with great results for the childs prolonged standing and walking years. The surgeon thinks its a bad idea to introduce the electric wheelchair to him yet and that he needs to maintain and continue his walking for as long as is possible for him. Whereas the Nuerogenetic team have applied and granted Musty his first power chair to use at school this year. The decision is our in the end but by god its a hard one, operate or not to operate, powerchair or not yet. Anyway whatever we feel will ease Mustyz exhaustion and "torture" as he calls it and lessen any pain in his life may be what we opt for. Thanx for your interest Lori.

Lori Ware said:
Where do you live and what doctors are recommending this?
THanks for the information. Please don't take my questions as accusatory! I didn't mean it that way....Just information to help us help you (since you asked). I can't imagine how difficult this decision is for you. I wish you the best of luck as you decide what is best for your child! I know that you will make the right decision. Lori

Lina El Saddik said:
Hi Lori, we live in Sydney Australia. A surgeon named Dr Matthias Axt is recommending the surgery with the support of my sons Nuerogenetic team too. The surgeon is from Germany and he claims that there they conduct the surgery much earlier in a childs life than here with great results for the childs prolonged standing and walking years. The surgeon thinks its a bad idea to introduce the electric wheelchair to him yet and that he needs to maintain and continue his walking for as long as is possible for him. Whereas the Nuerogenetic team have applied and granted Musty his first power chair to use at school this year. The decision is our in the end but by god its a hard one, operate or not to operate, powerchair or not yet. Anyway whatever we feel will ease Mustyz exhaustion and "torture" as he calls it and lessen any pain in his life may be what we opt for. Thanx for your interest Lori.

Lori Ware said:
Where do you live and what doctors are recommending this?
Any thoughts on serial casting?

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