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Author Topic: Anybody with osteogenesis imperfecta?  (Read 3250 times)

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zioon

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Anybody with osteogenesis imperfecta?
« on: November 04, 2014, 03:26:25 PM »

I was diagnose with osteogenesis imperfecta a few year back after having multiple fracture on my left femur.  Recently i just did LL using LON method to correct my deformities and length discrepancy 5cm. 

After lengthening for 2 1/2 month, the bone is not healing as expected or can say that the bone is not healing.

i take calcium milk with vitamin D and biocalth calcium l-threonate Pill everyday but its still don't help with the bone healing.

I'm really feeling frustrated as my doctor keep telling me to go back to the clinic every 2 week to monitor whether the bone is healing or not. I try to suggest to him maybe bone graft will help but he told me that he want it to heal by itself.

Is it bone graft not good for our body or? Don't understand why my doctor don't let me do bone graft.

I'm tired of this kind of like. I looking forward for my new year. Is impossible now.
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123

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Re: Anybody with osteogenesis imperfecta?
« Reply #1 on: November 04, 2014, 03:44:42 PM »

I was diagnose with osteogenesis imperfecta a few year back after having multiple fracture on my left femur.  Recently i just did LL using LON method to correct my deformities and length discrepancy 5cm. 

After lengthening for 2 1/2 month, the bone is not healing as expected or can say that the bone is not healing.

i take calcium milk with vitamin D and biocalth calcium l-threonate Pill everyday but its still don't help with the bone healing.

I'm really feeling frustrated as my doctor keep telling me to go back to the clinic every 2 week to monitor whether the bone is healing or not. I try to suggest to him maybe bone graft will help but he told me that he want it to heal by itself.

Is it bone graft not good for our body or? Don't understand why my doctor don't let me do bone graft.

I'm tired of this kind of like. I looking forward for my new year. Is impossible now.

The only thing I can say is that you did a really dumb decision to do LL while knowing that you have osteogenesis imperfecta.

Just let your doc do his thing, I'm pretty sure he's more knowledgeable than you.
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zioon

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Re: Anybody with osteogenesis imperfecta?
« Reply #2 on: November 04, 2014, 03:52:21 PM »

The only thing I can say is that you did a really dumb decision to do LL while knowing that you have osteogenesis imperfecta.

Just let your doc do his thing, I'm pretty sure he's more knowledgeable than you.

I just don't want to have limping leg for the rest of my left. This was suggested by my doctor and even my wife encourage me to do it. Somehow i regretted now. My question now is, will bone graft help with the healing?
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Re: Anybody with osteogenesis imperfecta?
« Reply #3 on: November 04, 2014, 03:58:35 PM »

I just don't want to have limping leg for the rest of my left. This was suggested by my doctor and even my wife encourage me to do it. Somehow i regretted now. My question now is, will bone graft help with the healing?

Sure you had your reasons but osteogenesis imperfecta is a serious illness but hey I'm not here to judge you.

But for this kind of questions you should ask doctors, no one here is qualified to give you advice on this. Just go to every orthopedic in your area and ask for their advice, the more opinions you get, the better. 
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Greek-Semidget

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Re: Anybody with osteogenesis imperfecta?
« Reply #4 on: November 04, 2014, 07:29:44 PM »

Plate it or put titanium road.
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TRS

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Re: Anybody with osteogenesis imperfecta?
« Reply #5 on: November 05, 2014, 04:33:51 AM »

I remember you, you're doing LL because of discrepancy and faced delayed or non-union. I'm sorry to hear that you're in this situation.
Have you quit smoking? Ask your surgeon whether bone compression would help with bone healing.
« Last Edit: November 05, 2014, 06:11:53 AM by TheRisingShorty »
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zioon

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Re: Anybody with osteogenesis imperfecta?
« Reply #6 on: November 05, 2014, 10:26:19 AM »

I remember you, you're doing LL because of discrepancy and faced delayed or non-union. I'm sorry to hear that you're in this situation.
Have you quit smoking? Ask your surgeon whether bone compression would help with bone healing.

Yes i have quitted, but i think "osteogenesis imperfecta" is the reason why my bone is not healing.

I'm doing bone compression now. I'm turning 1/4 four time per day. Each clockwise and anti clockwise. i going back to the clinic 2 week later. I'm afraid this not going to help too. That is the reason why i seeking advice at here from people who have "osteogenesis imperfecta"  like me.
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TRS

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Re: Anybody with osteogenesis imperfecta?
« Reply #7 on: November 05, 2014, 11:18:33 AM »

Lets hope that the compression does help with your bone healing.
Otherwise, you should seek advice from other limb reconstruction specialists as well. Ask them whether bone graft will be suitable in your case. You can also enquire about BMP (bone morphogenetic proteins) treatment which may be an alternative to bone grafts http://www.aaos.org/news/aaosnow/apr09/research3.asp
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Disobedient

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Re: Anybody with osteogenesis imperfecta?
« Reply #8 on: November 05, 2014, 12:50:08 PM »

I was diagnose with osteogenesis imperfecta a few year back after having multiple fracture on my left femur.  Recently i just did LL using LON method to correct my deformities and length discrepancy 5cm. 

After lengthening for 2 1/2 month, the bone is not healing as expected or can say that the bone is not healing.

i take calcium milk with vitamin D and biocalth calcium l-threonate Pill everyday but its still don't help with the bone healing.

I'm really feeling frustrated as my doctor keep telling me to go back to the clinic every 2 week to monitor whether the bone is healing or not. I try to suggest to him maybe bone graft will help but he told me that he want it to heal by itself.

Is it bone graft not good for our body or? Don't understand why my doctor don't let me do bone graft.

I'm tired of this kind of like. I looking forward for my new year. Is impossible now.

I had bone graft for my femur, firstly I tried bone marrow injection MANY TIME, but somehow  I didn't get a good response n  my left femur , , so I tried bone graft ..
and my last x-ray show a good reunion ..
you can have the bone graft taking from your body (Iliac crest) this called Autograft which is much better (in case of success) , the down side is that you'll have some pain n  Iliac area , but it manageable with using same pain killer.
n my case I used substitute bone graft, and it worked for me , but I would strongly recommend if you'll go for bone graft then choose  autograft ..

the downside for bone graft, that your body could reject it, but usually with Auto graft you're minimizing that ..
 

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Disobedient

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Re: Anybody with osteogenesis imperfecta?
« Reply #9 on: November 05, 2014, 12:55:47 PM »

Lets hope that the compression does help with your bone healing.
Otherwise, you should seek advice from other limb reconstruction specialists as well. Ask them whether bone graft will be suitable in your case. You can also enquire about BMP (bone morphogenetic proteins) treatment which may be an alternative to bone grafts http://www.aaos.org/news/aaosnow/apr09/research3.asp.


they used that in my case ,  but again I would strongly recommend you to choose Auto graft, yeah you would have some pain, and a scar ,, but it  has high opportunity to success ..
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