PDA

View Full Version : question about continued curve



lbloodojunkieg
06-26-2006, 11:40 PM
Hey all. I am not sure how to word this so bear with me....I am 19 and relativly pain free from my scoliosis. Once in awhile I have pain. I have a throracic (sp?) curve of about 54-55. I am done growing but my curve is getting worse. Would you have surgery now?
(This will not hinder my desicion as it is already made. I am just curious as to what others think.

Snoopy
06-27-2006, 06:05 AM
I'm glad to hear that you are just asking for others opinions, because the decision whether to have surgery and/or when is a decision that you need to make.

Having said that, we opted to have my daughter's surgery done when she was 13 y.o., even though she never had pain, and have never regretted that decision. Jamie's main thoracic curve was 46* and her Kyphosis was 71* and even though she was also done growing, her curves continued to increase.

Good luck with your decision. Remember to weigh all of your options.

Mary Lou

JamieAnn
06-27-2006, 08:38 AM
I wasn't done growing until I was almost 17 - maybe she really wasn't done growing? A doctor knows better than me, but just a thought!

Also, I'm curious how many people out there this really happens to - where the curve continues to grow after surgery? Anyone know the % chance of that happening?

I know this is a question for my doc, but I don't go back for 8 months or so. Just curious if anyone has asked this before.

Jamie

HGD24
06-27-2006, 10:01 AM
My curves were measured when I was 18 and a freshman in college. At they time, they measured between 55 and 65 degrees. I had no pain and was very active in sports at the time. The surgeon who measured me mentioned that a back brace or surgery were my only options. I told my parents that I was too young to have surgery on something that didn't bother me and that realistically, I was not going to wear a brace in college! After that, I really never gave my scoliosis much thought unless someone asked me about it. I played co-ed softball every year, went rollerblading, bike riding, skydiving and did anything and everything I wanted to do without any thought about my back.

When I was 29 and went for my yearly physical, my height measured a 1/4 of an inch shorter than in previous years. The PA sent me to a women's bone and joint specialist who sent me to my surgeon. He measured my curves at 75 degrees each. It was obvious at that time that my curves were progressing and they chance of them not progressing without surgery were slim. After long talks with my surgeon, my family and family and friends who are in medical fields and some research, I decided to have the surgery. I wanted to do it before I had kids and before pain set in and while I was still young enough to recovery fairly quickly. It's worked out really well for me so far.

lbloodojunkieg
06-27-2006, 01:11 PM
Thank you for taking the time to reply. I am going in for surgery on July 13th.
I guess the reason I am going in now is because I want it done while I am still young, don't have to worry about it later. I hope to god I don't need revision surgery later in life. To answer JamieAnn's question, the percentage of curves that continue to curve after growth if very small. It's pretty rare. I am a male, which scoliosis is rare in, and also it is continueing to curve, which is rare. Lucky me!!

JamieAnn
06-27-2006, 02:28 PM
Actually.. I was wondering what % of curves continue to grow after SURGERY. I actually think the progression of curves after growth (once at a certain degree) is quite normal. I was asking specifically about surgery...

summer
06-27-2006, 03:02 PM
Hmmmmm..........I thought once you had surgery that STOPS the curve. The spine has no where to go because it's surrounded by metal rods. That's the only way to stop the curve and the reason why most people including myself have surgery to begin with. I could be wrong, but I hope not!

JamieAnn
06-27-2006, 03:35 PM
I read Snoopy's post wrong - I thought it said the curves continued to grow after surgery!

Regardless, I have read about curves getting worse after surgery (or am I nuts)? So my question remains. But thanks for the reply - and you're right Summer, I would certainly hope that is never the case.

:rolleyes:

Snoopy
06-27-2006, 06:08 PM
JamieAnn,

I reread my post because I didn't want people to think Jamie's Scoliosis had progressed after surgery. She was skeletally mature at the time of surgery--doctor x-rayed her hand to check the growth plate and she was measured every three months or so and hadn't grown at all in the 1 1/2 years before surgery.

You asked if curves and progress after surgery and yes, in a way they can. Jamie has both Scoliosis and Kyphosis, and she developed what the doctor calls "junctional Kyphosis" which simply means Kyphosis that develops after or because of surgery. Her original Kyphosis was in the thoracic area and now she has developed Kyphosis above the fusion. She is fused from T3-L2 and her new Kyphosis is from about C3 or C4 to T3. As for how often this happens, I can't say. I'm sure it is rare, but it happened to Jamie and also to another member of our support group. Really odd thing about that, Jamie was a teen when she had surgery and had Kyphosis before surgery and the other person is an adult without Kyphosis before surgery and both surgeries were done by different doctors at different hospitals.

Good news for Jamie is once she reached about 15 months post-op, her junctional Kyphosis has stopped progressing.

Mary Lou

summer
06-27-2006, 06:19 PM
I have to say that really stinks...........to go through all this surgery and then the curve wiggles its way below and above the fusion? I can't even imagine having to go through this again and my prayers go out to those of you who had to experience that

LindaRacine
06-27-2006, 06:34 PM
Progression of curves after fusion surgery is relatively rare, as is development of new curves above or below the fusion.

--Linda

sweetness514
06-28-2006, 06:21 PM
Hey all. I am not sure how to word this so bear with me....I am 19 and relativly pain free from my scoliosis. Once in awhile I have pain. I have a throracic (sp?) curve of about 54-55. I am done growing but my curve is getting worse. Would you have surgery now?
(This will not hinder my desicion as it is already made. I am just curious as to what others think.

Since you do ask for opinions, I'll share mine. I would wait, as I did at that age. I was scheduled for surgery at the age of 18(backed out the night before), when my thoracic curve measured at 60 degrees, and when I did decide to have surgery at 26, b/c of pain that STARTED to be a factor in my life, it was still 60 degrees and I had it measured and Xrays in three different hospitals, so in my case it didn't grow. My lumbar curve decreased in my teens and in between the time I got diagnosed at 12 and wore a brace for years until the age of 18(about the time I stopped growing), the thoracic curve had grown from 34 to 60. My reasoning to wait for surgery is ONLY when one is still very young, in no pain and it can still be done with great success in years later(twenties), b/c there are risks of revision for many things- plus losing some flexibility- wich happened to me nonetheless BUT at least I didn't have to bother with my back from ages 18 to 25, wich was great.

But your decision is your own, and you know the risks and will probably have to get surgery at some point, so you can do it now or wait a little wich is not that big of a difference. For me it was better, but this is you and your back and I wish you health and a straight back in the near future :)

sweetness514
06-28-2006, 06:23 PM
Actually.. I was wondering what % of curves continue to grow after SURGERY. I actually think the progression of curves after growth (once at a certain degree) is quite normal. I was asking specifically about surgery...

Maybe it happens when a fusion is not solid? I'm not an expert, and I can't say for sure if rods would prevent that.

Karen Ocker
06-28-2006, 06:42 PM
WITHOUT hardware, the way fusions were done 50 years ago-my original operation- I lost correction. AND that was after spending a YEAR in a cast, unable to walk, for the fusion to solidify. :eek:

My spine has NOT lost correction in the 3 1/2 years since my revision.
(pedicle screws, laminar wires, Isola rods, pelvic screw and a cage).
No wonder my spine cannot go anywhere!!! ;)

Suzy
06-28-2006, 08:20 PM
Hey Summer,
I just got back from P.T. and learned Kyphosis is something that is a possability above fusion. According to him we just need to stay flexable and strong to help to prevent this. Yes I agree it sucks thinking that future surgery might happen, however for me that is all the insentive I need to keep up on staying in shape. Future surgery is not a given, however you must keep your mind on preserving what is left and keep it in tip top condition. Lets focus on the positives! We are straight and tall again!!


MaryLou,
Did Jamie's P.T. inform you that kyphosis could occur above her fusion? Maybe she was more prone to it then others? I wonder if once you have it it is possable to have it re occur, more often then one who doesn't have it before surgery? Any thoughts on this?

sweetness514
06-29-2006, 04:35 PM
I didn't have kyphosis above my fusion(before I had surgery) and I'm starting to get it now. Wonder what exercises would help, but it's hard to keep the head straight, but I try when I think about it.

I do see that a LOT of people without scoliosis or fusions do have kyphosis in many areas. I think we tend to notice our back problems more since we check ourselves and go to see orthos. So I'm trying to not let it bother me too much. The other day I noticed Madonna has kyphosis for sure.

always smilin'
06-29-2006, 08:16 PM
I am one of those lucky ones whose curve is developing both above and below the fusion (I'm fused T2-T12). My spine just wants to do what it wants to do. I am looking at a possible revision surgery in the next couple of years. (Oh, and I go to one of the best surgeons in the U.S. - maybe even the world:) So, I don't fault the surgeon...just my body.

Always Smilin'

Snoopy
06-29-2006, 08:40 PM
Suzy,

Jamie's surgeon told us before surgery that Kyphosis above the fusion was a possiblity (just like the possibility of being paralized, etc.), but he was going to take every possible precaution to prevent it. I know when we first saw her new Kyphosis, it really shook up her surgeon. He was visibly shaken and totally at a lose as to why it happened. He made it a point to use extra hooks/wires at the top to try to avoid it and he also explained before surgery that he had to be cautious as to how far to fuse to avoid this.

I'm not sure if having Kyphosis before surgery makes you more prone to it after surgery or not. I'd be interested in knowing how many people actually develop Kyphosis above their fusion. As for the thought of staying fit to avoid Kyphosis, I don't know what to think about that.

At this point, Jamie's Kyphosis has held steady for the past few months and we've agreed unless it gets really bad, we won't even consider surgery. Most people don't even notice the Kyphosis. We hope and pray that it doesn't increase. The last thing we want to do is face more surgery.

Mary Lou

LindaRacine
06-29-2006, 09:17 PM
Spine. 2006 Feb 1;31(3):299-302.

Distal junctional kyphosis of adolescent idiopathic thoracic curves following anterior or posterior instrumented fusion: incidence, risk factors, and prevention.

Lowe TG, Lenke L, Betz R, Newton P, Clements D, Haher T, Crawford A, Letko L, Wilson LA.

Woodridge Spine Center, Wheat Ridge, CO 80033, USA. woodridgespine@aol.com

STUDY DESIGN: This is a retrospective multicenter analysis of a subset of 375 patients with thoracic adolescent idiopathic scoliosis (AIS) treated with either anterior (238) or posterior (137) fusion with preoperative or postoperative distal junctional kyphosis (DJK) >or=10 degrees . OBJECTIVES: To determine the incidence of DJK before and after surgery in patients with AIS undergoing either anterior or posterior thoracic fusion, and provide recommendations for prevention. SUMMARY OF BACKGROUND DATA: DJK following surgical treatment for AIS may result in pain, imbalance, and unacceptable deformity. The true incidence of DJK following selective anterior or posterior instrumentation and fusion is unknown, as are "risk factors" for its development. METHODS: Mean age at surgery was 14.4 years (range 9.1-20.9) in the anterior group and 14.7 years (range 10.2-20.7) in the posterior. Analysis included the Cobb and instrumented levels of the thoracic curves, and sagittal measurements, all on preoperative and 2-year follow-up standing 36-in radiographs. RESULTS: In the anterior group, the incidence of preoperative DJK was 4.2%, and postoperative DJK was 7.1%. In the posterior group, the incidence of preoperative DJK was 5.0% and 14.6% after surgery. When postoperative DJK developed in the posterior group, mean postoperative T10-L2 was +17 degrees kyphosis compared to +2 degrees in the posterior group without DJK (P < 0.001). When postoperative DJK developed in the anterior group, mean postoperative T10-L2 was +12 degrees kyphosis compared to +2 degrees for the anterior group without DJK (P = 0.006). DJK was significantly more likely to occur in the posterior group if the Cobb was instrumented to less than Cobb +1 (P < 0.001). CONCLUSIONS: It appears that both posterior and anterior instrumentation for thoracic curves must include the junctional level to prevent postoperative DJK when postoperative DJK is present. The presence of increased kyphosis after surgery in the T10-L2 region seen in both anterior and posterior groups that had postoperative DJK develop constitutes a "risk factor" for the development of DJK.

lbloodojunkieg
07-02-2006, 04:42 PM
Thank you everyone for your thoughts and opinions. I have surgery set on July 13th. Thank you for the artice LindaRacine.

berta@aloha.net
07-03-2006, 12:36 PM
This is my first time on this forum and not sure I'm doing this right! My curvature has progressed rapidly now that I'm in my 50's and I only began to have constant pain within this last year. I'm reading everything I can get my hands on and realized, contrary to what I've always been told, that it isn't too late for me!! And I don't want to end up more crippled over this last stage of my life! I need feedback from "older" patients mostly, but welcome all. I'm scared!

SandyC
07-03-2006, 12:50 PM
Berta,
I had my A/P in in'01. I'm now 56. Just make sure that your doc has done a LOT of adult scoli revisions. I had mine done at UCSF by Dr. Deverian, who is in with Dr's. Hu and Bradford. It was had, but having said that I would do it again without question. Good Luck