View Full Version : Thank You!

08-27-2004, 10:22 PM
I want to thank you for being generous with your time to answer my "frantic" call for help.

After leaving the doctor's office today, I was pretty much beside myself, feeling very sorry for myself. But, I do feel so much better having read some stories of people my age having this done.

I don't really have a choice anymore. It's either the surgery, or I'll end up crippled. Nope! Too young for that! Again, many thanks, Deb

08-28-2004, 12:01 AM
Hi Deb...

How large is/are your curve(s)? Almost no one with scoliosis actually ends up crippled, and it's sort of one of my pet peeves that there are medical professionals out there who still use that threat to convince patients to have surgery.

Don't get me wrong, I think surgery is a great option for many of us. I've had it myself, and am glad I did so.

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]

08-28-2004, 06:27 AM

Wow, you certainly have done your homework. It's a lot to think about. When, when do we all make the decision to have surgery? I have put it off for so long, but, the older you get, the more fixed and rigid your bones get. And then, when hitting menopause, I can only imagine that might cause additional problems.
This doc I went to yesterday, first of all, would not even do the surgery. He said it was too severe. He did say I will become bedbound, and end up like those old ladies whose ribs rests on her pelvis, all stooped over. NO NO NO!!! That can't happen to me!
Again , my curves are thoracic 56, lumbar 120,and I have a small compensatory cervical curve. My back has always bothered me, but not enough to stop me from living. About 2 years ago, I noticed slowly a deterioration in my activities of daily living, to now, I practically live on the couch. Surgery frightens me terribly, but living on the couch is no way to live.
This whole thing is just outrageous because I have had 8 very hard surgeries in the last 5 years, and I never thought I would have to go in for one more. But, I've learned in my life, NEVER say never.
I am so grateful to have found this forum and read up on all of you and learn your stories. I felt very much alone, not knowing anyone who has this condition.
I am looking forward to making friends. And, I will try to document my journey along the way for others.
Thank you!

08-28-2004, 11:22 AM
Wow Deb. I don't think I've ever known anyone with such a large, unfused lumbar curve. Most adults seem to start having fairly severe pain and loss of function when a lumbar curve gets to 60 degrees or more.

I would like to urge you to see a scoliosis specialist with a LOT of experience. Where do you live?


08-28-2004, 01:56 PM
Hi Linda,

I live in New York, and I am going to see a Doctor Frank Schwab at Maimonides. I have seen his name pop up several times in many scoliosis forums. He supposedly is one of few here that will perform the surgery on an adult. That said, who knows what he will think when he sees my x-rays. When I look at them, I sort of gasp. Would you believe I continued working and functioning very well until two years ago? Yes, I had some pain, but, was very tolerable. This past year, I can't stand longer than 10 minutes. I miss going places with my husband.

I would do anything other than this surgery if there were options. I see him on Sept 9, and then I will take it from there. It would be wonderful to have a life back, but, at what expense? You wonder, you know, if this is not the worst decision you'll ever make, or the best. My greatest fear is being paralyzed.


08-28-2004, 04:39 PM
Hi Deb...

Glad you've gotten to a doctor who knows what he's doing. For some reason, I thought you were being told that there was nothing that could be done for you. If you want a second opinion, I highly recommend Dr. Boachie in NY. I've seen him present several cases that were, believe it or not, far worse than you. Surgery on large curves almost certainly carries a higher risk of neurologic problems, but I think you'll find that the risks are still relatively low.

Good luck on the 9th!