Scoliosis Support Group

I had surgery Jan 08. I agree it was a hard surgery,but I don't regret it.
My backbone was undermy left shoulder and my ribs were on my pelvis. It had taken part of my left lung If I had not had the surgery , IF I had not had the surgery, I honestly think i WOULD NOT BE HERE TODAY.The dr said it would have gotten my heart next. I went up in height from 4'10 to 5'5. In my case i guess ther could be problems down the road . I also had grear dr's .they gave me my life back. .

Hi LinC1953,

I'm thrilled to hear your procedure when well, but the assertion that the surgery was necessary for medical reasons just isn't supported by the literature. The research simply doesn't exist. There is no proven medical benefit for scoliosis surgery in patients with Idiopathic Adolescent Scoliosis.

Either you mis-interpreted what the Dr. said or he/she intentionally mis-led you. Sorry, those are the research supported facts.

I'm not attempting to critize your treatment decision....I have no right to do so and it is a moot point, but I do feel strongly that we can dramatically reduce the number of patients who even reach the surgical threshold if we start pushing an Early Stage Scoliosis Intervention program immediately when a curvature is detected....Instead of watching it get worse until the child is put into a worthless brace, which doesn't reduce the number of children/adults whom elect to have a surgical procedure that, in the long-term, is often worse than the original condition.

Sorry, my frustration got the best of me. WE NEED A BETTER WAY!

An early stage scoliosis intervention program IS the better way.

Hi Dr.Stitzel

My son was diagnosed with scoliosis in the labour ward when he was a few minutes old, so diagnosis doesn’t get much earlier than that. Since then he has been tested and treated for the curvature, yes he did end up in a dreaded brace (up to 40 to date) he will be 7 years old in September. However to me this was just preventative and not corrective and therefore he had surgery last Thursday with Vepter Rods being fitted. He is doing okay since he came off the morphine and got out of the bed yesterday and took a few steps. In my opinion we have now only begun the real treatment for him and hopefully the rod lengthening will help with his posture over the coming years and perhaps get him to a point in his teen’s where fusion is an option. As a parent I don’t see any other way.

Regards,

SteveQ

Hi SteveQ,

As I alluded to in the very first sentence, "(which again, I feel obligated to point out is 100% cosmetic in AIS)." the surgical risks do not outweigh the cosmetic benefits in Adolescent Idiopathic Scoliosis.

Infantile and juvenile scoliosis are a completely different animal than AIS...I am not advocating surgery for all infantile or juvenile case (many of them spontaneously correct), but it is the only course of action in some of those select few cases.

Your son's case makes us a very small portion of the scoliosis surgeries that are performed every year and one of the ones that may actually be medically necessary.

Unfortunately, medically necessary or not in your son's particular case, the fusion surgery does have a lot of long-term complications and risks. You should be aware of them and on guard for them should they arise in the future.

Best of luck to you and your son.

I was diagnosed at age 6 and was braced up until age 18. At which time it was determined by primary care and my orthopedic surgeon that to ensure that my heart and lungs continued to function normally surgery is required. So I had the initial surgery at 18. At 25 I had worn the connection points at the bottom of the rods, they were then removed, at 31 I had my son, it broke my fusion in three places and what was not fused was distorted and pinching on my spinal cord again in order to function surgery was required.

There is nothing cosmetic about these surgeries, I dont know many that would do it for that reason, the scar is worse than the curve if they are at a point to contemplate " for cosmetic reasons"

Your statement of the surgery being 100% cosmetic is absolutely misleading, and there is not a neuro or ortho that would agree with that, if so they should be reported. This is false information. No one would do this surgery if they did not have to.

That being said I do agree there needs to be a better way, the University of Washington has done studies on the effectiveness of fusions and also states there needs to be a better way but to date we do not have one.

Peace

Hi NVBarbarella,

Unfortunately, the research and literature is in complete disagreement with you. I am a professional and I would never take an irresponsible position without a large amount of data to support my conclusions. My apologies to you if you feel you were mis-lead in your decision to go forward with the surgical procedure. I can certainly understand your emotional responce given your personal history with the condition.

I don't want to speculate as to the motives of some orthopedic surgeons, but I suspect some of them are only telling half the story and allowing the parents/ patients to assume the spinal fusion surgery is medically necessary, instead of cosmetic....and every orthopedic worth his/her salt will tell you that if you ask them point blank.

Here are a couple of peer reviewed and published studies that illustrate and support my position.........

Dr. Han Weiss, director of the Schroth clinic in Germany, published a highly regarded article in a 2008 edition of Disability and Rehabilitation. The study found "no evidence has been found in terms of prospective controlled studies to support surgical intervention from the medical point of view...... Until such evidence exists, there can be no medical indication for surgery. The indications for surgery are limited for cosmetic reasons in severe cases and only if the parent and family agree with this."

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Results of surgical treatment of adults with idiopathic scoliosis.
J Bone Joint Surg Am 1987 Jun;69(5):667-75
Sponseller PD, Cohen MS, Nachemson AL, Hall JE, Wohl ME.

The outcome of surgical treatment of idiopathic scoliosis in forty-five adults was studied with special attention to pain, function, self-image, and pulmonary function. All of the patients were more than twenty-five years old at operation and had been followed for more than three years. Every patient who was operated on by one of us (J. E. H.) and who met these criteria was evaluated. The magnitude of the curves averaged 66 degrees. Standardized gradations of pain and function showed improvement over-all, but significant impairment remained. There was a reduction in the levels of peak and constant pain, but no change in the frequency of peak pain after operation. The number of patients who were pain-free after surgery was not increased. Functional impairment due to the scoliosis was lessened, and the ability to perform the common activities of daily living was improved, but no important changes in occupation or recreational activity were recorded. Correlations of pain or function, or both, and the changes in either, were found with only two parameters: age at follow-up and physical occupation. Pulmonary function, as measured, did not change. Eighteen (40 per cent) of the patients had a minor complication and ten (20 per cent), a major complication; there was one death, due to pulmonary embolism, of a patient who was excluded from the series. In view of the high rate of complications, the limited gains to be derived from spinal fusion should be assessed and clearly explained to patients before the procedure is undertaken.

Please read that last sentence again...........I wonder how many orthopedic surgeons are heeding their own advice.

Again, I can understand the emotional toll this whole experience has taken on you. I can understand most patient’s emotional reaction to new information that contradicts beliefs they have held dearly as truths for many years. No one likes being pushed out of their comfort zones, but only after we face the harsh facts of reality can we truly begin sowing the seeds of change.

I encourage you and others to visit the online forum at www.fixscoliosis.com . You will be AMAZED by the conversations going on there between patients, doctors, and experts from around the world.

We need a better way and you see this too......join us in E-SMART (Early Stage Management, Active Rehabilitative Treatment) and join the revolution.

Ok Doc. Then what is your suggestion for us patients that have a spinal disease that is getting worse every year. If you have 2 curves (one 50 degrees and the other 52 degrees)that are progressing at 2 degrees every year and listhesis is also occurring, then what do you do to fix it? I have tried spinal injections to help with the pain, but that does not stop the fact that my spine continues to curve.

Just out of curiosity, what type of doctor are you?

Hi,
I am sure Dr. Stitzel will answer you, but I thought I would too.
He and I are both chiropractors. We are specializing in scoliosis. As you have seen by many post, we are looking for a better way. We understand how traumatic it can be, and we want to offer hope of a non-surgical treatment. We are not here to start a fight or name call, honestly, we are just spread the word to those who are searching. There is a thread by Dr. Stitzel, YOU'VE GOTTA SEE THIS, showing a patient of a fellow CLEAR doctor. I think you will see dramatic changes. This is not smoke and mirrors, it is not false information it is pure, honest results. Instead of looking on the internet for negative comments, which there will always be, try getting on the www.Clear-institute.org forum and talk with some patients who have been thru the treatment.
There are patients from all ages and all degrees of curves.
I respect all of you for what you have been through, and I wish you all the best.

Hello Anolamom,

I'm sorry, but I can't create a doctor/patient relationship online, especially when I have never even evaluated the case. Adult scoliosis patient cases are definately more geared towards improving quality of life than absolute curve reduction. It should be noted that pain is not an indication for surgical intervention for scoliosis, nerve entrapment as the result of a disc prolapse yes, but scoliosis, no. They are 2 very different procedures, with very different long-term outcomes (niether all that good though). Spinal decompression may prove to be an effective treatment for your pain syndrome if it is being caused by a nerve entrapment.

Best of luck to you on your quest to get back to excellent health again.

Oh I am not looking for a diagnosis from you. Just trying to point out that you just want to say we need a better way, but we who are in pain need to be fixed now. You are insulting us by saying we are doing surgery for cosmetic reasons only. You do not feel what we feel, so please do not assume we are choosing surgery. Surgery is a last resort.