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Re: Bone graft site/Alpine

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Joyce,

Thank you so much for sharing with me. I enjoyed the long post.

Feel like I know you better than a one liner. Cam said to me in a

post today that she used this site to journal her feelings and

experiences - how wonderful we have each other. I have been

praying, minute by minute. It's the only way for me to get

through. I am thankful for your prayers as well. Did you have

revision surgery? If so, how long ago? How are you feeling now?

Are you pain free? What a blessing the new bone graft doesn't

hurt. I had bone taken from the front of my hip for neck fusion as

well and it hurt for about a day and has never bothered me since.

But this back of the hip thing for the scoliosis is a real problem.

No children, husband at work and unable to drive. I hear your

lonliness and understand it fully. We need to hear from you more

often! Do you have any hobbies at home? Sending you a hug - Alpine

-- In , " joyce edmonds "

<bichon4me@...> wrote:

>

> Alpine,

> I have a lot of pain and burning in my left hip from the bone

graft site of a surgery in 1988. The bone was taken to place in my

neck at C1-C2 so the pain has nothing to do with scoliosis or

flatback surgery.

>

> In 2004 when I found out I needed surgery for scoliosis I was not

a happy camper when Dr Lenke said he was going to take bone from my

right hip. I voiced my concern but he brushed it off saying that at

least my pain would be distributed. I don't think he realized the

magnitude of my pain. He did take bone from my right hip and I have

not had any pain what so ever from it.

>

> I just read your post of how depressing it can be when you are

home alone with your thoughts. I don't have any children, my

husband works and I can't drive at the present time. It's not fun,

especially when you are limited with how much time you are allowed

to sit at your computer without making your back and hip pain

unbearable. This is the first post I have made to the group in over

a month but I just wanted to tell you that taking bone from the hip

doesn't necessarily mean you will have pain from it.

>

> You wanted suggestions for easing the pain. My doctor had me on

Neurontin until the first of this month (I'm not sure if it helped)

at which time he switched me to a new drug called Lyrica. I think

it is helping but I have dozed off 3 times while typing this post.

One of the side effects.

>

> I know your surgery is right around the corner and I know you are

scared out of your wits but, for me, the closer the time came the

calmer I got. Just pray about it and I will pray for you.

>

> I'm sorry for the long post but I feel like I was just released

from my cage.

>

> Joyce E

>

>

> [ ] Question about bone harvesting

>

>

> I was wondering if any of you have pain from the bone harvesting

from

> your original harrington rod procedures. 21 years out I still

have so

> much pain from the bone graph site in my lower left hip in the

back.

> My curve was low enough in my back that Dr. Dawson was able to

take

> bone out of my backside instead of the front of my hip. Dr.

LaGrone

> said that there is nothing he can do for this pain. Is anyone

> suffering from this? Does anyone have suggestions on how to

ease this

> pain? Dr. LaGrone also said that he would use cadaver bone for

the

> revision surgery. Is there any concern about contracting

disease?

> Does anyone know how this cadaver bone is cleaned/prepared

before it's

> inserted into our backs?

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

>

>

>

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I think the study that showed no pain from the bone graft site after

one year just didn't look at patients far enough out

Even though I had surgically induced flatback since the time of my

original surgery in 1973, I really did not start having much pain

until 20 years later. And where did the pain start? Right under

the scar on my hip where they harvested the bone.

When I saw Dr Sachs at the Texas Back Institute (the only doctor I

have seen who seemed to know what he was looking at -- or at least

the only one who would be honest with me), he said it was hard to

tell from my xrays exactly what was causing the pain. I definitely

got the impression that pain at the site of the bone harvesting

would not be that unusual. But, I have the bizarre third rod that

ends very near there, and the SI joints were named as a third

possibility for the cause of my pain. I think that is why SI joint

injections were his next step in the diagnosis process.

Unfortunately, it took me about a year to find a local doctor to do

the injections and to get the MRI and bone tests, and by then, my

insurance had changed and won't pay for me to go out of state.

My pain management guy said that he thinks the end of that third rod

is part of my pain, so he injects some of the numbing stuff there as

well as in my SI joints and the L4, L5, and S1 nerve roots.

What seems odd to me is that I assumed the SI joints were the crack

looking things in the pelvis near the end of my rod, but now I am

having pain on the right side, and the doctor said that is SI joint

pain and it is closer to my spine. The pain on the left is more

like halfway between my spine and my side (and under the scar).

All I know for sure, is that Dr Eckman injected some dye into my SI

joints to see if they were fused because from the xray he thought

they might be, but they are not. He also thinks that I am not fused

all the way to S1, which I had thought I was. He agreed that it

would have made sense since my rods go all the way down, but is not

sure if it just didn't fuse properly or if they were left unfused on

purpose. I do know that pseudarthrosis was mentioned by my original

doctor when I got my first disability parking permit back in 1974.

Whether it was at the bottom of my fusion, or closer to the area

where the rod is broken, I don't know.

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Alpine,

You asked if I had revision surgery. No, I had my first scoliosis surgery in July and August of 2004. I am not pain free but all of my pain is from the neck surgery I had in 1988. I had a lot of nerve damage and also a stroke on the operating table. My left side is weak. In 2003 I developed Charcot's Joint in my right shoulder and have limited strength in that arm. That is when I had to give up driving. I know what I need to drive again I just can't find anyone to do it. Not that I have put forth a whole lot of effort to find that someone. It is called "effortless steering." When the weather gets warmer I'll see what car dealerships can do for me.

You take care and I hope you find an inner peace about your upcoming surgery.

Joyce E

[ ] Question about bone harvesting> > > I was wondering if any of you have pain from the bone harvesting from > your original harrington rod procedures. 21 years out I still have so > much pain from the bone graph site in my lower left hip in the back. > My curve was low enough in my back that Dr. Dawson was able to take > bone out of my backside instead of the front of my hip. Dr. LaGrone > said that there is nothing he can do for this pain. Is anyone > suffering from this? Does anyone have suggestions on how to ease this > pain? Dr. LaGrone also said that he would use cadaver bone for the > revision surgery. Is there any concern about contracting disease? > Does anyone know how this cadaver bone is cleaned/prepared before it's > inserted into our backs? > > > > > > scoliosis veterans * flatback sufferers * revision candidates > > > >

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