old pro here I welcome ?????

[jojo]

I am 31 years old and had the surgery at 11 years of age. I have 2 steel rods the entire length of my back. Ask me anyhting you want.

jojo

[cherylplinder]

HI Jojo,
Thanks for posting! I would love to know what you have experienced in the past 20 years( DID I get that right?)
What limitations have your surgery imposed? I would love to know the details of you story. I have a 10 year old daughter to make decisions for, and I want to be fully informed. I am looking for anything that will help me.
We are currently using the Spinecor brace. The BOSTON did not help her curves, but I have recently(yesterday) discovered (on line)that the BOSTON the orthotist put her in was not the one indicated for her curve. (apex T7-T8)(Our MD did not determine that apex of her curve until AFTER the brace was made. THe orthotist thought the apex was T8; she is missing a rib.)( Our MD only specified TLSO brace)
So that means she might have done OK in the RIGHT TLSO, or a Milwaukee. (DO YOU HAVE TO FIND OUT EVERYTHING FOR YOURSELF!!!!!!!!!)
I know the doctors we are seeing now only have her best interest in mind, and can't control all the parameters of what happens.{ OFten these curves have a mind of their own, and do what they are determined to, no matter what you do! I know that correct bracing CAN decrease the curve that you deal with at surgery, if you get there. }I am comforatable with her current doctor's level of dedication.(They have absolutely dedicated their lives to these children!) But this brace may not work for her, and I have to be aware of where to turn next! I have learned to try to educate myself!!
That said, if this doesn't work, I know our current physicians will have unsurpassed advice of the next step! I am just reeling from the past few months and trying to understand where we may be going.
THANKS!!!!!!!!!!
Cheryl
If you want to e-mail me, my address is cherylplinder@hotmail.com.

[jojo]

I started wearing a brace when I was 7. I have a condition called Marfan's syndrome which no one diagnosed back then. I stopped wearing my brace in 4th grade because I purposely "accidentally” (shh ) destroyed them. I now have a 9 year old daughter who has scoliosis and has been lucky enough to have her curves correct themselves up to this point, but I am sure she will one day need surgery. In the recent research I have done the brace really does not help Marfan’s patients as much because the spine spirals instead of bends. Since it is the only treatment besides surgery I would still do it. My daughter getting diagnosed is when I was diagnosed. Prior to that I was assumed I had idiopathic scoliosis.

After my surgery there was a long (few months) recovery although mine was faster then most. My back stopped aching and I pretty much lead a normal life. I did/do all of the things they tell you not to such as bending to lift and vacuuming. I have since stopped doing those as much because 20 years later I do get stuck, so to speak, in a bent over position after sitting for long periods of time. No worries I do get straightened up and have no trouble again until I sit for long periods. This is not painful so I am alright. When I lift a lot I do get a little ache but I have had x-rays and there is no visible trouble. I would think anyone who is 30 would get achy after lifting things.

I have never had a problem dancing or swimming or doing anything (would not recommend gymnastics) I have carried 3 pregnancies with grace and little issue. I gave birth naturally and could not have an epidural due the spinal fusion. I have only set off one metal detector in the Dulles airport shortly after 9/11. Unless I tell some one they would not know that I had the surgery. Even in a bikini people could barely see the scar going the entire length of my back. My body is still uneven (most noticeably in my hips) but you cannot really tell.

B4 the procedure it was very obvious that I was “crooked”, but I am better for it and super glad I had it.