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IS SCOLIOSIS SURGERY RIGHT FOR YOU?

While scoliosis surgery has helped many people, including myself, to lead better lives, it's not the right solution for everyone. Following are some questions that you might consider if you're trying to make the decision about whether or not to have scoliosis surgery. While these questions are targeted at adults with idiopathic scoliosis, many of the questions are appropriate for other types of scoliosis. Also, please note that you may not be able to answer all of the questions. If that happens, please just go on to the next question.

Take out a sheet of blank paper, and draw a line down the center. Label one column SHOULD HAVE SURGERY, and the other one SHOULDN'T HAVE SURGERY.

  • What is your current age?

    • Add 1 point to the SHOULD column if you're LESS THAN 30 YEARS OF AGE AND HAVE AT LEAST ONE CURVE >50¡.
    • Add 1 point to the SHOULDN'T column if you're 30 OR OLDER AND HAVE A CURVE LESS THAN 50¡.

      There are several considerations in terms of age. First, if you're young, and your curves are large, experts say that you can expect your curves to increase 1¡ to 2¡ a year. So, if you have a 50¡ curve at the age of 20, you might have an 80¡ to 110¡ by the time you're 50 years old. On the other hand, if you're age 50, with a 50¡ curve, your decision will be a little harder. You also need to know that recovery from surgery at the age of 20 is going to be somewhat easier than recovery at the age of 50.

  • Has progression of at least 5¡ been documented since skeletal maturity?

    • If you've documented AT LEAST 5¡ PROGRESSION, add 2 points to the SHOULD column.
    • If you've documented AT LEAST 10¡ PROGRESSION, add another 2 points to the SHOULD column.
    • If your curve(s) HAVEN'T INCREASED, OR INCREASED LESS THAN 5¡, add 2 points to the SHOULDN'T column.

      Curve measurements aren't always precise. Studies have concluded that there can be up to 5¡ margin of error in either direction when one doctor measures the same x-rays twice. There can even be a difference in measurement from morning to afternoon. One should probably never base their surgery decision on progression (or lack thereof) in a single year, unless progression is really excessive. Progression is probably best monitored over a period of more than two years. Also, if you have significant pain or disfunction, curve measurement is really meaningless.

      Curves that haven't progressed may never progress. So, if you're living a normal life without a lot of pain, there's a reasonable possibility that you'll be able to avoid surgery.

  • Do you have significant back or radicular leg pain, or loss of function?

    • Add 3 points to the SHOULD column if you COMMONLY EXPERIENCE SIGNIFICANT LEG OR BACK PAIN.
    • Add another 3 points to the SHOULD column if you've had TO GIVE UP ON ACTIVITIES THAT YOU LIKE.
    • Add 2 points to the SHOULDN'T column if you HAVE ONLY MODERATE PAIN ON AN OCCASIONAL BASIS.
    • Add another 2 points to the SHOULDN'T column if you PRETTY MUCH DO WHATEVER ACTIVITIES YOU WANT.

      Studies have shown that the majority of adults without scoliosis have at least occasional back pain. So, your pain may actually be a normal part of aging. If you have moderate pain on an occasional basis, most experts would recommend that you try conservative treatments, or just allow the pain to run its course. On the other hand, if you have significant pain much of the time, or have lost the ability to perform activities that you enjoy, you might want to think seriously about surgery.

  • Have at least two surgeons who specialize in the treatment of scoliosis, recommended surgery?

    • Add 1 point to the SHOULD column if AT LEAST TWO SURGEONS HAVE RECOMMENDED SURGERY.
    • Add 1 point to the SHOULDN'T column if you've ONLY SEEN ONE SURGEON, or if ANY QUALIFIED SURGEON RECOMMENDED THAT YOU NOT HAVE SURGERY.

      First, please be sure that you've selected surgeons who routinely treats spinal deformities. In 1999, 1,500 surgeons performed fewer than 10 scoliosis surgeries each. In "The Scoliosis Sourcebook" by Dr. Michael Neuwirth, he states "There's no magic number that defines how much experience is enough, but I would say that a surgeon should handle a minimum of 100 spinal surgery cases per year. Unless at least 25 to 50 of these are scoliosis surgeries, I would keep looking."

      Although I'm sure there are good scoliosis surgeons who aren't members, and probably some bad surgeons who are, the Scoliosis Research Society is the best place to start in terms of finding a good surgeon. You can find a list of SRS members in your area here.

      I've found that many qualified surgeons steer their patients to or away from surgery, so if they have a specific recommendation, you should certainly take that into consideration. Some surgeons are naturally more conservative than others. Most good surgeons want happy patients, and will not recommend surgery if they think the patient will be worse after surgery. I've found that some surgeons who do few scoliosis surgeries, steer patients away from surgery. While that's probably not helpful in many cases, it's probably better than these surgeons performing the surgeries themselves.

  • Have you tried at least one or two conservative methods (physical therapy, injections, etc.) to treat your scoliosis?

    • Add 1 point to the SHOULD column if you've TRIED AT LEAST TWO NON-SURGICAL TREATMENTS.
    • Add 1 point to the SHOULDN'T column if you've NEVER TRIED ANY NON-SURGICAL TREATMENT.

      If your curves are moderate, you have moderate pain, and no loss of function, I would recommend that you consider conservative treatment options. There are many treatments that have been reported (although not proven) to reduce the pain often associated with scoliosis.

  • If you've chosen a surgeon, have you spoken to patient references?

    • Add 1 point to the SHOULD column if you've TALKED AT LENGTH TO AT LEAST 2 PATIENTS WHO HAD PROCEDURES SIMILAR TO WHAT HAS BEEN RECOMMENDED FOR YOU.
    • Add 1 point to the SHOULDN'T column if HAVEN'T CHECKED ANY REFERENCES FROM YOUR SURGEON.

      While surgeons aren't likely to put you in touch with patients who had bad outcomes, reputable surgeons will give you the contact information for several previous patients. I strongly recommend that you contact them. These patients are your best bet for learning about what you might expect to experience if you choose to have surgery. If there's a scoliosis support group in your area, you might hear good and bad things about surgeons there. Also, a great place to check out surgeons and hospitals, is on the National Scoliosis Foundation Forums, where you can do a search by the name of the physician or hospital. You should always keep in mind that every surgeon has patients with good outcomes and patients with bad outcomes. In fact, you may be more likely to hear about bad outcomes by surgeons who do the most scoliosis surgeries, because they probably take on the most difficult cases.

  • Do you have good health insurance?

    • Put 1 point in the SHOULD column if you CURRENTLY HAVE GOOD HEALTH INSURANCE.
    • Put another point in the SHOULD column if YOU THINK YOU MIGHT LOSE YOUR HEALTH INSURANCE, OR THAT THE QUALITY OF YOUR INSURANCE WILL DECLINE IN THE FUTURE.
    • Put 1 point in the SHOULDN'T column if YOU HAVE POOR INSURANCE COVERAGE.
    • Add another point to the SHOULDN'T column if YOU THINK YOUR INSURANCE COVERAGE WILL IMPROVE IN THE FUTURE.

      You may not always have great health insurance. If you're in a group plan, the insurance company has to cover your spine. However, if you become self- or unemployed, you may end up with no health insurance, or a plan that includes a pre-existing condition clause that excludes any spine treatment.

      There are other considerations in terms of insurance. For example, if your insurance is an HMO or POS plan, you may find that you cannot select your choice of surgeon. Also, you should read the "Evidence of Coverage" provided by your insurance company. You may find that you'll have to pay a significant portion of the charges. Scoliosis surgery in the U.S. starts at about $200,000 and sometimes exceeds $1,000,000. If you think you'll eventually need scoliosis surgery, find a job that provides good health insurance. Once you're "off the grid", you may not be able to get treatment until you reach Medicare age, and perhaps in the future, not even then.

      So, if you've got good insurance now, and you think that you'll eventually have to have surgery, now may be the best time.

  • Do you have small children, or plan to have children in the future?

    • Put 1 point in the SHOULD column if you YOUR YOUNGEST CHILD IS AT LEAST 18 YEARS OLD, OR IF YOU HAVE NO CHILDREN.
    • Put 1 point in the SHOULDN'T column if YOU HAVE A CHILD UNDER THE AGE OF 18 IN YOUR HOME.
    • Add another point to the SHOULDN'T column if YOU HAVE A CHILD UNDER THE AGE OF 10 IN YOUR HOME.

      This is probably the most difficult question to address. If you have small children, or plan to have small children, there's probably no perfect time to have scoliosis surgery. Handling children, especially doing things like putting them into car seats, is just brutal on your back. If you choose to have surgery, the discs above and below your fusion may be at increased risk of degeneration. So, carrying a heavy child may eventually lead to more pain and perhaps more surgery. If you can wait to have your surgery until your children are self sufficient, you may have an easier time.

  • Do you have someone to help you at home after your surgery?

    • Add 1 point to the SHOULD column if YOU HAVE SOMEONE WHO CAN STAY WITH YOU IN YOUR HOME FOR AT LEAST TWO WEEKS AFTER YOU'VE BEEN RELEASED FROM THE HOSPITAL.
    • Add 1 point to the SHOULDN'T column if YOU DON'T HAVE SOMEONE TO HELP YOU AT HOME AFTER YOU'VE BEEN RELEASED FROM THE HOSPITAL.

      If you choose to have surgery, you'll be somewhat out of commission for at least a month or two afterward. During that time, do you have someone who can step in and take care of you, your pets, and any dependent children in your household? I've known adults who have had surgery, and who did not require any help at home afterward. I've also known adults who have had surgery, and who needed help to even get in and out of bed. So, if you don't have someone to help after surgery, you might want to consider holding off until you do have someone, or can afford to hire someone.

      Something else to consider is whether someone can stay with you in your hospital room. Many patients tell me that having a family member or close friend who stayed with them 24/7 is more than a little helpful.

      Here's a good list of things to make your life easier when recovering from scoliosis surgery.

  • Do you know the risks involved with surgery?

    • Add 1 point to the SHOULD column if YOU FEEL THAT YOU'RE COMPLETELY INFORMED ABOUT THE RISKS OF SURGERY.
    • Add 1 point to the SHOULDN'T column if YOU HAVEN'T INVESTIGATED THE RISKS.

      While most people have good surgical outcomes, there are plenty of bad things that can happen to you. The list of potential complications is long, and there's a reasonable chance that you'll have at least one, especially if you're age 50 or older. Complications such as pseudarthrosis (non-fusion) and infection may require additional surgery. While very rare, severe complications include things like permanent neurologic damage and death. Links to some abstracts for scoliosis surgery outcome studies can be found here. As mentioned elsewhere in this document, your age, general health, and choice of surgeon may reduce or increase your risks.

  • Do you have realistic expectations in terms of reduction of pre-surgery pain?

    • Add 1 point to the SHOULD column if YOU HOPE TO HAVE A REDUCTION IN PAIN.
    • Add 1 point to the SHOULDN'T column if YOU HAVEN'T CONSIDERED THAT YOU MIGHT END UP IN MORE PAIN.

      If you're expecting scoliosis surgery to resolve all of your pain, you may be very disappointed. Studies show that most people are happy with the outcome of their surgeries. However, not everyone gets a big reduction in pain, and in fact, I've heard of some patients who had an increase in pain. Many patients report that they've exchanged one type of pain for another. While most teenagers report no pain after the initial recovery period, that's not the case for adults. Adults only rarely report that they're pain free after the initial recovery period. If you have realistic expectations, I believe you're more likely to have a good outcome.

  • Do you have other health issues?

    • Add 1 point to the SHOULD column if YOU'RE HEALTHY.
    • Add 1 point to the SHOULDN'T column FOR EVERY MAJOR HEALTH PROBLEM YOU HAVE WHICH YOU BELIEVE MAY MAKE SURGERY MORE DIFFICULT.

      If you've smoked for a long time, or have a very large thoracic curve, your pulmonary function may be so poor that you would not be a good surgical candidate. Eating disorders or obesity can make surgery or recovery very difficult. In addition, conditions such as cancer, diabetes, blood disorders, heart disease, etc. may put the patient at increased risk of complications. Most surgeons will not perform scoliosis surgery on patients who smoke, as smoking is known to increase the failure rate of fusion. You should discuss any of these concerns with your surgeon.

  • Is the potential for cosmetic improvement important to you?

    • Add 1 point to the SHOULD column if YOU LOOK FORWARD TO LOOKING BETTER.
    • Add 1 point to the SHOULDN'T column if YOU COULD CARE LESS ABOUT HOW YOU LOOK.

      While surgeons rarely operate on patients whose only complaint is the way they look, they certainly take this into consideration. A good scoliosis surgeon can get a good amount of rib hump correction during the derotation part of scoliosis surgery. Some patients report that their rib humps reappear after surgery. If the cosmetic aspect is especially significant in your mind, I urge you to find a surgeon who routinely performs thoracoplasties.

      Also don't forget that you're going to end up with scars. While most people report that the scar that runs down the spine is minimal after a few years, it bothers some people, especially those who end up with adhesions which result it more prominent scarring. Also, if you're having surgery on the anterior part of your spine, the resulting scar may be quite a bit more noticeable than a posterior approach scar. If this concerns you, I recommend that you bring it up with your surgeon.

  • Are you at at stage in your life when it might be convenient or inconvenient to be out of commission for awhile?

    • Add 1 point to the SHOULD column if BEING OUT OF COMMISSION FOR UP TO 6 MONTHS WOULD NOT BE A PROBLEM.
    • Add 1 point to the SHOULDN'T column if YOU HAVE COMMITMENTS OVER THE NEXT 6 MONTHS THAT WOULD BE DIFFICULT OR IMPOSSIBLE TO AVOID.

      Many people plan their scoliosis surgeries for a time of school/career/life changes so that their recovery time has little impact on anything. In my own case, I planned my surgery more than a year in advance so that I could be sure I had as little impact as possible on myself and my clients.

INTERPRETING THE RESULTS

Now, add up the points in each of the columns. Hopefully, the results will help you quantify whether scoliosis surgery might be right for you. If you find the the final values in the two columns are close, I encourage you to discuss the results with your scoliosis specialist, who may be able to tip the scales in one direction. This test should, by no means, be the only thing you consider when making your decision.

I am not a medical professional, and do not have any medical training. I've learned these things by talking to hundreds of scoliosis patients, and many of their physicians. Your spinal deformity surgeon is the most important source of information for your particular problems.

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