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CHRIS WBS
01-18-2007, 03:55 PM
Going through some old posts, I came across this study abstract that was originally posted by Linda Racine. I'm curious if anything has come out since this was published that DISPUTES the CONCLUSION of this study. Many people on this board with untreated scoliosis are quite obviously suffering from more than just little physical impairment as this study suggests. I've also noticed that when I click on the name of a person who is celebrating a birthday who is in their 40s, 50s and beyond, a number of people indicate they are disabled which certainly contradicts what this study suggests.



Here's the abstract of a study that looked at patients who decided not to have surgery:

JAMA. 2003 Feb 5;289(5):559-67.

Health and function of patients with untreated idiopathic scoliosis: a 50-year natural history study.

Weinstein SL, Dolan LA, Spratt KF, Peterson KK, Spoonamore MJ, Ponseti IV.

Department of Orthopaedic Surgery, University of Iowa Hospitals and Clinics, Iowa City, IA 52242, USA. stuart-weinstein@uiowa.edu

CONTEXT: Previous long-term studies of idiopathic scoliosis have included patients with other etiologies, leading to the erroneous conclusion that all types of idiopathic scoliosis inevitably end in disability. Late-onset idiopathic scoliosis (LIS) is a distinct entity with a unique natural history. OBJECTIVE: To present the outcomes related to health and function in untreated patients with LIS. DESIGN, SETTING, AND PATIENTS: Prospective natural history study performed at a midwestern university with outpatient evaluation of patients who presented between 1932 and 1948. At 50-year follow-up, which began in 1992, 117 untreated patients were compared with 62 age- and sex-matched volunteers. The patients' mean age was 66 years (range, 54-80 years). MAIN OUTCOME MEASURES: Mortality, back pain, pulmonary symptoms, general function, depression, and body image. RESULTS: The estimated probability of survival was approximately 0.55 (95% confidence interval [CI], 0.47-0.63) compared with 0.57 expected for the general population. There was no significant difference in the demographic characteristics of the 2 groups. Twenty-two (22%) of 98 patients complained of shortness of breath during everyday activities compared with 8 (15%) of 53 controls. An increased risk of shortness of breath was also associated with the combination of a Cobb angle greater than 80 degrees and a thoracic apex (adjusted odds ratio, 9.75; 95% CI, 1.15-82.98). Sixty-six (61%) of 109 patients reported chronic back pain compared with 22 (35%) of 62 controls (P =.003). However, of those with pain, 48 (68%) of 71 patients and 12 (71%) of 17 controls reported only little or moderate back pain. CONCLUSIONS: Untreated adults with LIS are productive and functional at a high level at 50-year follow-up. Untreated LIS causes little physical impairment other than back pain and cosmetic concerns.

PMID: 12578488 [PubMed - indexed for MEDLINE]

structural75
01-18-2007, 05:26 PM
Chris,
Well. maybe that is why those people are members of this forum... they weren't as successful and could use the support. I would guess that most folks who are doing pretty well would not necessarily have need to be on such a forum/support group. Just a different perspective on things. Besides, a few individuals doesn't even come close to representing the larger majority of people with ideopathic scoliosis out there. Just like surgery, there are those who have benefited greatly (probably a good majority) and those who have not. But I don't think those who have not would be capable of dismissing the conclusions of studies otherwise.

Just a thought... :)
structural

gerbo
01-19-2007, 02:02 AM
Untreated LIS causes little physical impairment other than back pain and cosmetic concerns

I think the wording could be seen as belittleling the significance of "cosmetic concerns" and the detrimental effect on daily functiioning of "back pain"

tommyo
01-19-2007, 06:48 AM
I agree with structural 75!

I know a number of people (two men, two women)who have had this surgery with absolutly no problems and they would never post on these boards because they have no need to. In fact they tell me to not go on here because they feel I'll get scared off from surgery. (I don't agree.) They say their lives are totally normal since surgery and they feel they have no restrictions. They are all in there forties and had the surgery in early forties.

joeb-z
01-19-2007, 02:27 PM
The criteria for childhood onset of scoliosis could be relatively small curves. 10 degree Cobb angle. Thus a lot never became serious or unstable. Also, the people chose to remain untreated and that could select for less serious problems.

Singer
01-19-2007, 03:53 PM
Tommyo,

That's good to hear, and I suspect it's true too -- that most people with successful surgeries just go on with their lives instead of posting on a forum like this. I have a love/hate relationship with this forum myself -- I find it scary as hell but have gotten so much good practical information from the nicest people. And now it's like reading a good book with characters I care about -- I just have to know how everybody's surgeries come out!!

Karen Ocker
01-19-2007, 05:08 PM
This study is late onset (LIS in the abstract) idiopathic scoliosis not the type that starts in adolescence. Also the numbers in the study are small compared with thousands--maybe millions of persons around the world with this.

It's great if curves do not progress and stay below disabling numbers. I had the heartbreaking experience of a fused (no hardware--not done at the time) spine continuing to curve since my original surgery at age 14. My unfused spine curved also. By age 59 my curves were: 30 cervical, 80 thoracic, and 40 lumbar AND I was getting out of breath after a full meal.

The point I want to make is this: statistics show that larger adult curves can insiduously increase 1-3 degrees a year--In my case even the fused portion.
At age 52 my thoracic was 62 deg; at 59 it was 80deg. At 40 my lumbar curve was 20deg---20 years later it was 40deg. Only one degree a year meant a doubling of that curve. I tried valiantly to find some alternative to stop this but I personally do not think, other than Pilates which did help my quality of life, surgery could have been avoided.

The reason why I participate on this forum is to inform what CAN happen and to spare someone else what happened to me.
However, revision surgery did give me my life back.

Shari
01-21-2007, 12:15 AM
I'm like a dog with a bone sometimes, and this is one of those subjects.

There have been many people on this forum that no longer participate, one reason being that they have had a successful outcome and have moved on. The other may be that they have had a really bad outcome and don't want to scare the hell out of anyone else. There are always different reasons.

I can only speak for myself, but there are so many different reasons I have remained here. And the biggest one is that I feel a sense of loyalty for the compassion, understanding, knowledge and support I have received from it before and after my surgeries.

And if I can give that kind of comfort to just one person, then it worth every minute of my time!!! :p

Shari

dawney
01-21-2007, 07:17 AM
I agree with Shari. Since I have been felling better alot of imes I will think I won't check today or I don't have time. I am going to make sure I stay affiliated with this site. It has made me laugh and cry. It gave me a big sense of relief and made me feel that I was not alone. Anyway I am going to try to stick around to help others.

Gator
01-21-2007, 02:41 PM
Please,please do! I am counting on you guys to get me through the next 9 weeks until my surgery! I have already learned so much from you and I don't feel like I am facing such BIG surgery alone. Actually one of my surgeons says it's not a big surgery- it is a lot of little surgeries just on one patient. :) I do have a lot of support at home from family and friends- and after reading some of the posts I truly realize how lucky I am. It is so nice to hear from some of you who are older. I will be a "very young" 65 next month...sigh.

Julie

Suzy
01-21-2007, 02:58 PM
Tomorrow will be my 11 month anniversary of my surgery and I will stick around and post as often as I can to help others, as I have been, with this forum. I truly feel those who have had surgery and disappear are missing out on a wonderful opportunity to reach out to others. I have had such a positive outcome with my surgery I feel the need to let others know. Those facing future surgery need to know all they can to prepare mentally and physically. Sure this is a tough surgery, I'm not going to sugar coat it. But, hopefully after hearing from those of us who have gone through it, those facing it, will be more at peace knowing those who have gone before them did well! We need to stick around for them. I remember so well the feeling of finding out I needed surgery and not knowing what to expect.