a 3rd surgery possibly

[scarlett03]

Hi, I'm Gail...i had my first surgery in 1992 to fuse and add hardware (not sure the exact type). then in 1996 , i had the rods removed because they were becoming painful and palpable through my skin. They removed the rods, and claimed my curve was properly fused. Before my first surgery, my curve was about 63 degrees (or about that). After surgery, it was corrected to about 33 degrees. in 1999, i went back, claiming i could tell my scoliosis was progressing, and very confused, because i thought the fusion would prevent this. they basically told me, yes, it progressed, but only about 5-10 degrees, and thats normal. so, here it is, 2003, i go back to the doctor (different state now), and they get my original x-rays from NC (before, after, and in 1999), and took new x-rays, cat scans (sp?), and even an MRI....concluding that my curve is now almost 68 degrees, and apparently my fusion didnn't 'take'. Ever since the rods were removed, my curve as been progressing. They recommend me for another surgery. this time its through the front as well as the back. and they are talking about removing a rib??!! , and cutting the bone graft that didnt fuse out...and if i'm not mistaken, i heard him tell another doctor in another room that they'd have to break my back??!! i will get together all of my questions before my next visit, which is to discuss the surgery and see if i want to proceed.
does anyone have any knowledge about the rib removal and back breaking? that sounds painful. he also said they'd have to put in screws..i've never heard of hardware that just consisted of screws, will there also be rods? and he thinks he can correct some of it. is that really possible after so many years? i'm 24 now, i think i'm finished growing, and the first doctor who did my fusion couldnt correct my spine more than like 33 degrees because it was so rigid.
sorry for the rambling...i tend to 'make a short story long'....any help would be appreciated, anything that can tide me over till my next visit. i dread another surgery, especially one so major. can i find any info on this type of surgery online?
thanks!
~gail

[LindaRacine]

Hi Gail...

Sometimes, fusion from both the front and the back of the spine is necessary. When surgery is necessary from the front, a rib is deflated in order to have access to the spine.

As far as breaking your back, I suspect the doctors may have been talking about breaking up part of your old fusion to give you a better balance either in the coronal (from the front) or sagittal (from the side) plane.

When you go back to see the surgeon, I recommend that you take someone with you to help you remember what's said, and also to help you think of questions based on what is said.

You might want to consider picking up a new book: Scoliosis Surgery: The Definitive Patient Reference. The NSF may have it on their site, or you can order it directly from the author at http://www.curvedspine.com. It should help you make informed decisions about your treatment.

Best of luck.

Regards,
Linda

P.S. I forgot to address your question about screws. Pedicle screws are commonly used these days, to attach the rods to your spine. There was quite a bit of controversy in the past in regard to pedicle screws, but it the hands of an experienced surgeon, they have been shown to be the best and safest method of attachment.

[scarlett03]

thanks Linda, i'll check that book out. and thanks for all the info. i only hope someone is available to go with me to my next appointment...we're far away from family and friends, and hubby works alot...
~gail

[LindaRacine]

Hi Gail...

I may have read this, but forgotten. Where in California are you?

--Linda

[scarlett03]

i'm in N. cali...about 30 min. south of carson city, nv...a town called Coleville, CA....about 45 min. north of Bridgeport, CA.
~gail

[LindaRacine]

Hi Gail...

Diane Gums, who runs a scoliosis support group in the Sacramento area, routinely attends doctors' appointments with people to act as a second pair of ears. If you'd like to contact her, her email address is dgummer@comcast.net. I believe she's out of the country at the moment, but I'm sure she'll respond when she returns.

Regards,
Linda

[scarlett03]

Ok, thanks for the info!
~gail

[bonniep]

Hi Gail. I hope this message doesn't arrive too late to be of any value to you. I am much older than you, 54, and I had my first surgey 5 years ago, in 1998, when I was 49. At that time, I had rods implanted from T-5 to L-1, fusion, and 5 ribs removed. In my case, removing the ribs made it easier for my shoulder blade to fall into place. I believe removing the ribs was done mostly for cosmetic reasons. They really only removed "part" of each of the ribs in the back, and then ground them up and used them for the fusion. (The procedure is called "thoracoplasty", in case you want to look up more information about it.) For me, the area where the ribs were removed is the area that took the longest to stop being painful after the surgery. But it all did finally stop being a problem, and though my body was very far from perfect, it looked much better than it did before the surgery. Then, becasue I am a thin person, the rods were very irritating and protruded from my back. Like you, I had them removed after two years. I was told that fusions are stronger than the rods; I didn't need the rods any longer; and that removing the rods would alleviate my discomfit. This surgery was 1000 times easier than the first. I was out of the hospital the next day, back to work in three weeks, and it felt GREAT not to have rods in my back. However, in a few months I started to notice I was having more discomfit than before; I was getting shorter; and my curve appeared worse. My doctor said my x-rays were fine, but I insisted that something was wrong. He did a nuclear bone scan and discovered that I had multiple fractures in my fusion. This may have ocurred when the rods were removed, or the fractures may have been there all along. I don't know. Last year, two years after the rods were removed, I had to have a revision surgery becasue the curve was progressing so quickly and I was almost in constant pain. I had new rods put in from T-5 to L-2, fusion, and pedicle screws to hold the rods to my spine. They were able to get some of my correction back, but not much, and as always, my body remains far from perfect. My problem now, and I think it may be related to my age as well as the fact that I have now had three back surgeries, is that my back muscles seem to fatigue quickly. They ache when I sit or stand in a weight-bearing position for more than 20-30 minutes, and my back seems to have a lateral shift when I am tired, whereby the upper half of my back moves far toward my right side (where my ribs were removed). I don't know if not having the ribs there contriibutes to this problem or not. You may want to ask your doctor if that may happen to you, so that you know what to expect and what not to expect. I am in physical therapy three times per week. That is helping, but still not enough. In fact, the reason I am on this website is that I am looking for some support from someone who may know what else I can do to improve how I feel. However, I am writing to you to let you know that, if your doctor says he can correct part of your curve, he probably can -- you are NOT TOO OLD for this to happen. Also, to let you know that it is not totally unheard of to remove ribs, In fact, it is considered innovative and can help a lot in how your body ends up looking.
I wish you the very best of luck. Let me know what you end up doing.
--Bonnie