Setting the Record Straight

[LindaRacine]

But, I guess my point is I don't think you hear enough on this forum about problems relating to scoliosis surgery.

Hi MissEmmyF...

I agree that good outcome stories are much more prevalent than bad outcome stories. I think there are two basic reasons for that: 1) Good outcomes outnumber bad outcomes by at least 3-4 to 1. 2) People with bad outcomes are less likely to post. I hear from people with bad outcomes occasionally, who state that they don't want to frighten others. My response is always that bad outcomes are as equally useful as good outcomes, in helping people make the surgery decision.

And, to circle back to the original debate of negative posts about alternative treatments, you may remember that several of us have stated that the issue is false claims. Thankfully, I've never heard of anyone (at least here in the U.S.) making false claims about scoliosis surgery. People undergoing surgery have to sign an informed consent statement that summarizes the potential complications of the procedure(s) that they'll be undergoing. There are a lot of potential complications. Thankfully, the vast majority of complications are not serious, and can easily be corrected or endured. Unfortunately, for the small percentage of people who have serious complications, their outcomes can be 100% bad. These are all things that we need to understand before agreeing to surgery. But, at least it's all information we know prior to treatment. If I ever heard that a surgeon guaranteed a good outcome, I think we'd all jump down their throat. I'd lead the way.

Regards,
Linda

[mamamax]

Hi Emmy – there is much evidence of what you say.

Regarding surgery: when successful, this is - a miracle (an understatement for those who experience such).

Also true: there are serious risks (as in any surgery) to be considered.

When I was considering surgery earlier this year (which would effectively involve fusion top to bottom), I discussed these risks (as well as the fact that surgery would be no guarantee in terms of pain relief) in detail with more than one highly qualified and respected surgeon – and I also searched out accurate evidence-based reports. The report below (full text version) written (and well referenced) by Hans-Rudolf Weiss & Deborah Goodall is one of the best I have ever come across, and one I would highly recommend to anyone considering surgery (as an informational reference toward individual patient/surgeon discussion). An informative and compelling report regarding both risks and statistics:

Rate of Complications in Scoliosis Surgery
A Systematic Review of the Pub Med Literature
Hans-Rudolp Weiss & Deborah Goodall
Published August 5th 2008
Scoliosis 2008, 3:9 doi: 10.1186/1748-7161-3-9
http://www.scoliosisjournal.com/content/3/1/9

Circling back to the original debate regarding negative posts in the non surgical forum – the best (and one of the more recent) examples of this may be found in the Success with Spinecor thread: http://www.scoliosis.org/forum/showthread.php?t=7733

Many of us have come to understand subsequently that the original poster is as real as her experience. She in fact shares the same Spincor provider practice as myself.

The official answer to such things, and how to best handle them (by example) – found in posting #1 (this thread) Setting the Record Straight:
http://www.scoliosis.org/forum/showthread.php?t=8765

Joe’s response does seem to have made some necessary and much welcomed changes to our workshop forum were we find a large group of international membership (each member with individual and unique experiences). Think we learn daily how to best communicate with each other towards valuable discussion that increases a knowledge base which is viewed world wide (maybe a few members are even watching now while attending the SOSORT meeting in France during breaks). In my personal opinion, learning how to best communicate in such an environment is a life-long learning experience, and we learn much from mistakes (I have anyway, and certainly I cannot be all that different from anyone else).

[LindaRacine]

Rate of Complications in Scoliosis Surgery
A Systematic Review of the Pub Med Literature
Hans-Rudolp Weiss & Deborah Goodall
Published August 5th 2008
Scoliosis 2008, 3:9 doi: 10.1186/1748-7161-3-9
http://www.scoliosisjournal.com/content/3/1/9

First, I doubt that you would trust a scoliosis surgeon to publish an unbiased study on the effectiveness of alternative treatments.

Second, at least there ARE long-term outcome studies for scoliosis surgery. The same cannot be stated for Schroth, or any other alternative treatment.

Third, the referenced study includes papers that go back to surgical procedures that have been out of use in the US for several decades. It also includes surgical procedures on patients with neuromuscular scoliosis and congenital scoliosis. (The alternative to surgery for many of of these patients, is death.)

A more fare view of current short-term scoliosis surgical outcomes can be found here:

http://www.ncbi.nlm.nih.gov/sites/entrez

Spine. 2006 Feb 1;31(3):345-9.Click here to read Links
Complications in spinal fusion for adolescent idiopathic scoliosis in the new millennium. A report of the Scoliosis Research Society Morbidity and Mortality Committee.
Coe JD, Arlet V, Donaldson W, Berven S, Hanson DS, Mudiyam R, Perra JH, Shaffrey CI.

Center for Spinal Deformity and Injury, Suite 1F, 360 Dardanelli Lane, Los Gatos, CA 95032, USA. jcoe@jcoemd.com

RESULTS: Complications were reported in 5.7% of the 6334 patients in this series. Of the 1164 patients who underwent anterior fusion and instrumentation, 5.2% had complications, of the 4369 who underwent posterior instrumentation and fusion, 5.1% had complications, and of the 801 who underwent combined instrumentation and fusion, 10.2% had complications. There were 2 patients (0.03%) who died of their complications. There was no statistical difference in overall complication rates between anterior and posterior procedures. However, the difference in complication rates between anterior or posterior procedures compared to combined procedures was highly significant (P < 0.0001). The differences in neurologic complication rates between combined and anterior procedures, as well as combined and posterior procedures were also highly statistically significant (P < 0.0001), but not between anterior and posterior procedures. CONCLUSIONS: This study shows that complication rates are similar for anterior versus posterior approaches to AIS deformity correction. Combined anterior and posterior instrumentation and fusion has double the complication rate of either anterior or posterior instrumentation and fusion alone. Combined anterior and posterior instrumentation and fusion also has a significantly higher rate of neurologic complications than anterior or posterior instrumentation and fusion alone.

The SRS has formed a study group that has and will continue to issue papers to show the long-term outcomes of surgeries being performed starting about 3 years ago. In the meantime, here are some long-term outcome studies on the universal implant systems that are the gold standard today:

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

Long-term clinical and radiographic results of Cotrel-Dubousset instrumentation of right thoracic adolescent idiopathic scoliosis.
Boos N, Dolan LA, Weinstein SL.

Dept. of Orthopaedic Surgery, University of Iowa Hospitals and Clinics, Iowa City, Iowa, USA. nboos@balgrist.unizh.ch

All patients were doing well and had no complaints with regard to a substantial limitation of professional or sports activity. There were no apparent non-unions, infections or neurological complications. CDI of adolescent right thoracic idiopathic scoliosis provides encouraging clinical and radiographic results at an average follow-up of 9 years (2 to 16 years). Overall patient satisfaction, functional status and subjective cosmetic improvement is high.

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

Spine. 2007 Sep 1;32(19):2103-10.Click here to read Links
Idiopathic scoliosis treated with Cotrel-Dubousset instrumentation: evaluation 10 years after surgery.
Bjerkreim I, Steen H, Brox JI.

Rikshospitalet-Radiumhospitalet Medical Center, Orthopaedic Department, University of Oslo, Oslo, Norway.

The average primary curve was reduced from 56 degrees to 19 degrees, and this correction was maintained during follow-up. Fourteen patients had minor complications, and 5 patients had implants removed because of late clinically suspected infections. A total of 86 patients answered the 10-year questionnaire; 97% of the patients considered back function as excellent, good, or fair, and 96% would have done the operation again. Scores for EQ-5D and ODI were slightly worse than in the normal population. Despite this observation, 45% of the patients reported to have consulted a physician or received physiotherapy for back pain during the last year before the 10-year follow-up. CONCLUSION: Radiologic results, patient satisfaction, and mean scores for quality of life and back function were excellent after CD instrumentation for AIS, but a considerable number of patients had treatment for back problems.

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

Eur Spine J. 2007 Mar;16(3):381-91. Epub 2006 Aug 19.Click here to read Click here to read Links
Minimum 10 years follow-up surgical results of adolescent idiopathic scoliosis patients treated with TSRH instrumentation.
Benli IT, Ates B, Akalin S, Citak M, Kaya A, Alanay A.

Department of Orthopedics and Traumatology, Faculty of Medicine, UFUK University, Mithatpasa Cad. 59/2, Kyzylay, Ankara 06420, Turkey. cutku@ada.net.tr

Last two decades witnessed great advances in the surgical treatment of idiopathic scoliosis. However, the number of studies evaluating the long-term results of these treatment methods is relatively low. During recent years, besides radiological and clinical studies, questionnaires like SRS-22 assessing subjective functional and mental status and life-quality of patients have gained importance for the evaluation of these results. In this study, surgical outcome and Turkish SRS-22 questionnaire results of 109 late-onset adolescent idiopathic scoliosis patients surgically treated with third-generation instrumentation [Texas Scottish Rite Hospital (TSRH) System] and followed for a minimum of 10 years were evaluated. The balance was analyzed clinically and radiologically by the measurement of the lateral trunk shift (LT), shift of head (SH), and shift of stable vertebra (SS). Mean age of the patients was 14.4+/-1.9 and mean follow-up period was 136.9+/-12.7 months. When all the patients were included, the preoperative mean Cobb angle of major curves in the frontal plane was 60.8 degrees +/-17.5 degrees . Major curves that were corrected by 38.7+/-22.1% in the bending radiograms, postoperatively achieved a correction of 64.0+/-15.8%. At the last follow-up visit, 10.3 degrees +/-10.8 degrees of correction loss was recorded in major curves in the frontal plane with 50.5+/-23.1% final correction rate. Also, the mean postoperative and final kyphosis angles and lumbar lordosis angles were 37.7 degrees +/-7.4 degrees , 37.0 degrees +/-8.4 degrees , 37.5 degrees +/-8.7 degrees , and 36.3 degrees +/-8.5 degrees , respectively. A statistically significant correction was obtained at the sagittal plane; mean postoperative changes compared to preoperative values were 7.9 degrees and 12.9 degrees for thoracic and lumbar regions, respectively. On the other hand, normal physiological thoracic and lumbar sagittal contours were achieved in 83.5% and 67.9% of the patients, respectively. Postoperatively, a statistically significant correction was obtained in LT, SH, and SS values (P<0.05). Although, none of the patients had completely balanced curves preoperatively, in 95.4% of the patients the curves were found to be completely balanced or clinically well balanced postoperatively. This rate was maintained at the last follow-up visit. Results of about 10 years of follow-up these patients treated with TSRH instrumentation suggest that the method is efficient for the correction of frontal and sagittal plane deformities and trunk balance. In addition, it results in a better life-quality.

[mamamax]

I doubt seriously that anyone would risk their reputations by publishing erroneous material in the Scoliosis Journal (which i believe requires some strict publishing guidelines).

The reason i reference this article (post #128 this thread) from the Scoliosis Journal (presented in 2008) is because (as i said earlier) it serves as an excellent reference for patient/surgeon discussion. The 254 citations given in this article cover all the risk factors that remain today - and provide some answers to what some may experience from older surgeries ... the information remains good material for patient/surgeon discussion - My orthopedic specialist also says it is an excellent article in this regard.

I don't really wish to debate the pros and cons of surgical vs non surgical methods of treatment for scoliosis - i've already reviewed the necessary things relative to my individual condition with experts in the field. The decision towards surgery (or not) is a personal one and the more information the better. Found your references also informative.

Regarding long term studies - they do take time. Was pleased to see history unfolding relative to Spinecor at the SOSORT Conference today (final program which includes seven presentations).


Rate of Complications in Scoliosis Surgery
A Systematic Review of the Pub Med Literature
Hans-Rudolp Weiss & Deborah Goodall
Published August 5th 2008
Scoliosis 2008, 3:9 doi: 10.1186/1748-7161-3-9
http://www.scoliosisjournal.com/content/3/1/9


6th International Conference on Conservative Management of Spinal Deformites
May 21-23, 2009 - Lyon, France
http://www.sosort-lyon.net/
Click on Final Program (on the left)
Search/Find on this page: Spinecor

[LindaRacine]

I doubt seriously that anyone would risk their reputations by publishing erroneous material in the Scoliosis Journal (which i believe requires some strict publishing guidelines).

Who said that anything was erroneous? They just chose to slant their results, by using old studies, most of which have zero relevance to surgeries being performed today, and studies on neuromuscular and congenital scoliosis, which have no relevance to patients with idiopathic scoliosis. We all see what we want to see.

--Linda

[mamamax]

We see what we want to see - that's the darn truth!

The information does remain good material for patient/surgeon discussion (for symptoms arising from older surgeries and for current known risk factors regardless of current methods) - My orthopedic specialist also says it is an excellent article in this regard - figure he knows what he's talking about.

[LindaRacine]

We see what we want to see - that's the darn truth!

The information does remain good material for patient/surgeon discussion (for symptoms arising from older surgeries and for current known risk factors regardless of current methods) - My orthopedic specialist also says it is an excellent article in this regard - figure he knows what he's talking about.

While we're on the topic, would you post who your orthopaedic specialist is?

[mamamax]

What would be the point?

[LindaRacine]

A discussion with him on the topic.

[LindaRacine]

[I]
The information does remain good material for patient/surgeon discussion (for symptoms arising from older surgeries and for current known risk factors regardless of current methods) - My orthopedic specialist also says it is an excellent article in this regard - figure he knows what he's talking about.

You don't need flawed studies for a discussion of surgical risks. Any of the newer studies I mentioned above outline the potential complications, and give a much more realistic picture of one's actual risk percentages.

--Linda

[mamamax]

A discussion with him on the topic.

Reference: Posts 133/134/135


Hahaha .. as i thought. Not everyone here posts contact information for their specialists. Have you? I think i'll remain in the camp where me and my specialist are anonymous. A personal choice made my many here. Last time i posted such information - said dear doctor received a lot of interesting phone calls - will spare this one.

I'm sure your specialist would be glad to discuss it* though

*The information does remain good material for patient/surgeon discussion (for symptoms arising from older surgeries and for current known risk factors regardless of current methods) - My orthopedic specialist also says it is an excellent article in this regard - figure he knows what he's talking about.

Rate of Complications in Scoliosis Surgery
A Systematic Review of the Pub Med Literature
Hans-Rudolp Weiss & Deborah Goodall
Published August 5th 2008
Scoliosis 2008, 3:9 doi: 10.1186/1748-7161-3-9
http://www.scoliosisjournal.com/content/3/1/9

[LindaRacine]

Just because you state it multiple times, doesn't make it true.

I suspect you're not posting the name of your specialist, because he is not a scoliosis specialist. My specialist is John Gray.

--Linda

[mamamax]

As i said (and regardless of what you suspect - which is not always correct) ...

Not everyone here posts contact information for their specialists. I think i'll remain in the camp where me and my specialist (who is a scoliosis specialist) are anonymous. A personal choice made my many here.

Last time i posted such information - said dear doctor received a lot of interesting phone calls - will spare this one.

BTY .. You're welcome doc

[LindaRacine]

As i said (and regardless of what you suspect - which is not always correct) ...

Not everyone here posts contact information for their specialists. I think i'll remain in the camp where me and my specialist (who is a scoliosis specialist) are anonymous. A personal choice made my many here.

Last time i posted such information - said dear doctor received a lot of interesting phone calls - will spare this one.

BTY .. You're welcome doc

Yes, not always, but definitely sometimes.

If you're basing your treatment decisions on the word of a doctor who is not a scoliosis specialist, wouldn't it be interesting to see what a specialist who treats lots of scoliosis patients, has to say?

[mamamax]

Yes - definitely.

Like i said above - my specialist is a scoliosis specialist .. well respected one at that.