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My third surgery, scared

neverstoppersnneverstoppers Posts: 29
edited 06/11/2012 - 8:31 AM in Back Surgery and Neck Surgery
Okay, i am about to have my third spinal fusion surgery.
My first surgery, was a major operation. I was told it was the longest operation in children hospital history of milwaukee. I have a basketball size tumor in my sarcum/pelvis area it was called MPNST. The spinal fusion was s1 s2 l4 l5.
The surgery left bad nerve damage in my back and left foot/leg. I have burning/tingling/electric shocks all the time in my left food if i dont take my meds.
My second surgery was to replace the whole fusion. They replaced it.
I have now come to find out, that the second surgery has done more damage. It left my back curved because the spinal fusion failed. Has this happend to anyone else. Where it left your back curved. They told me that it is going to put more and more pressure on back/fusion and will cause me more pain. My doc told me I can decide when to have the surgery or if to have it at all and just to tough out the pain. I think I should have it. But he said that they will need to move the spinal fusion up, because the back is curved. So I assuming its going to be a l3 l4 l5 s1 s2 surgery.
That to me sounds very very big and complicated.
The first two times my docs didn't want to use BMP, because of my cancer history. However since it has been 3.5 years, they are saying they can its up to me. I have done research online and it said that 5/175 people got it, and they developed bone cancer. My cancer came from NF. So i think i am in the clear for that.

I am just so worried that my spinal fusion will keep on failing and failing, and that it will never fully fuse. Because of the damage that was done during the first cancer removal operation. Are there any new techniques that are being discussed.

Did any of you ever have your back get worse from a spinal fusion where the back curved?

I know its a long post, I hope I did not confuse you!


  • Are you still going to the same surgeon? There are a number of outstanding spinal specialists in the Milwaukee area, if you still live in the area. Also, the Univ. of WI has a wonderful Spinal Clinic. At this point I would think you would want a spinal surgeon that specializes in back revision surgeries and scoliosis. I know one at UW that does many of these surgeries. If you are interested in his name, just PM me and I will give you that information.

    Regarding the use of BMP, there have been several long discussions about it on this board. Just use the search button to locate those threads if you are interested. Its use is somewhat controversial as you will see. It was used in my fusion without problem, so I cannot comment personally.

    If I were you I would get several opinions before moving ahead. Your third surgery is something many specialists would be reluctant to attempt. I think you need to go to the very best surgeon you can find. This is nothing to be entered into lightly.

    Good luck to you.
    xx Gwennie
  • yeah i want to get a different opinion on it. I do have two different doctors i see that work together on it. I see the second doctor in july, he is also my oncologist but he works on the spine too.

    i think if my back were not humped in the back, i would be reluctant to have it again. but i just think that eventually will make my back worse and worse over time.

    i have been through a lot, so i am not fearful of the pain that comes with the surgery, i have pain every day. its the fact of recovering from anther major surgery. Acutally this time they told me they dont bone graph bone from your hips which is the most painfull part imo.

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  • so has anybody had or heard about such a big spinal fusion surgery that it gose form s2 to l3 ?
    at least i believe t hats how big it is going to be.
  • Did they put instrumentation (rods and screws) along your spine to stabilize it when they did your fusion surgery? I already had a curvature (some scoliosis) when they did mine, so I had rods and pins placed. I was fused from S1 to L4, so it sounds like you will have two more levels than I did. I didn't know that S2 was a viable joint -- more like the remains of our tail, but I guess it is! I think I'd go for a second opinion too, but I think I would go for getting it repaired too. I had lots of docs tell me that I should do nothing about my back, but I'm so glad I did. The recovery wasn't easy, but I'm so much better off now than I was before surgery. I cannot imagine living in that kind of pain forever.


    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • yes they are using rods and screws i am not sure about s2 s1. i know its defiantly s1 l5 l4. and they said they will have to move it up. I might be describing it wrong. Maybe its more like a hump sticking out of my back, maybe not the spine being curved. I am just hoping this isn't such a rare surgery that my doctor knows what he is doing you don't usually here as big of a spinal fusion as mine. that it could go from s1 to l3(or s2 to l3).
    Before my second surgery, I was in way less pain. And I could do a lot more. Now my back hurts me a lot, and I barley can walk.
    Maybe this spinal fusion was doomed from the start.
    I know I will always be in some pain, because of the extent of my first cancer surgery that was 28 hours and cause extensive damage. But i would like to be in controable pain. my doctor is going UP on pain pills i would like him to go down. I was once taking NO pain pills a day after my first surgery.
    I just hope this third surgery doesn't make it worse that would be the worst possible outcome.
    How long was your guys spinal fuses. My second surgery was 13 hours.

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  • Large spinal fusions aren't all that rare. My old college roommate had her entire spine fused way back in the late 70s. She had severe scoliosis. I had my three-level in November. I was in surgery for about 9 hours on the first day, when they did the work from the back, then had to go into surgery again four days later so they could get the discs out from the front and put in the bone grafts. That surgery took about eight hours. I'm being careful so I don't have to worry about hurting the discs above my fusion, which they say are likely to go from lifting heavy objects, etc.

    I hope this third surgery stabilizes you and helps to eliminate most of your pain. It took me a long time to recover (well, I'm still recovering) from my surgery, but I think I am in much less pain now than I was pre-surgery.

    All the best to you.
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • thank you so much. i hope this surgery helps some of the pain too. hopefully i can find a great doctor to this. i am hoping whoever does it, it does fuse before it breaks. because my doctor said the rod can failure but if it fuses already it doesn't really matter.
    i am just so nervous i am going to have to do this throughout my whole life.
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