Good news for scoliosis fusion patients

Good news from a recent study of scoliosis spinal fusion patients!

According to this new release from the Hospital for Special Surgery in New York City, a small study of 20 scoliosis fusion patients indicates little to no degeneration 10 years post-op.

New instrumentation is credited with allowing "...the spine to be corrected in a much more natural, physiologic way..." This is one of just a few studies that have examined how scoliosis patients fare years after surgery.

While this report is encouraging, 10 years is not long enough to accurately predict what may happen in the long-term, IMHO. Ten years after my scoliosis surgery (with the now-antiquated Harrington rod), I was doing great, too. It has only been within the past few years (almost 30 years post-op) that I have felt the accumulative affects of degeneration and flatback syndrome. But, hopefully, this is the beginning of a trend to track scoliosis fusion patients as they age.

Search: "Milwaukee Brace"

Although Maria Talks Back is more than two years old, I only recently discovered the “Stats” tab in Blogger that tells me, among other things, what keyword searches lead people to this site.

Interestingly, the keyword phrase most likely to land folks here is “Milwaukee brace.” Similarly, my one and only post on this topic (written on March 17, 2009) has received more than quadruple the page views of any other post!

Clearly, I need to share more about my two and one-half years in the Milwaukee brace. But, in the meantime, perhaps you’ll find pictures of me in the Milwaukee brace of interest (“Milwaukee brace pictures” is the third highest keyword search that directs folks to Maria Talks Back).

You can view these pictures on Maria Talks Back’s Facebook page. And while you’re there, please consider “liking” the fan page. It’s the best way to get notification when a new post goes up. Thanks!

Scoliosis resources to share

When someone is struggling with a medical challenge, the internet can be a portal to knowledge, support and reassurance.

A simple Google search can yield a plethora of online information about scoliosis. Here are some sites that I recommend:

A Teenager’s Guide on How to Cope with Scoliosis : How I wish a resource like this was available during my scoliosis treatment! Haley has compiled an awesome support group for teens; the site is interactive and features a blog, polls, discussion board and space for visitors to share their stories about scoliosis, as well as useful info and links (including Maria Talks Back!).

National Scoliosis Foundation: Great source of information and resources, as well as an interactive forum to connect with other scoliosis patients.

Scoliosis Research Society: More great info, as well as a physician locator page.

Scoliosis Support: An interactive forum for patients, past and present.

Sound for Scoliosis: A nonprofit, endorsed by the National Scoliosis Foundation, that sponsors an annual fundraiser in support of scoliosis research; lots of useful links.

If you have a useful link to share about scoliosis, please let me know.

Being your own best advocate

Both my children were born as I snoozed under general anesthesia ~ a necessity dictated by my spinal fusions. Shortly after the decision to take J by emergency C-section, the anesthesiologist explained that an epidural would be difficult to administer, since I was unable to arch my back so the needle could be inserted in the right spot. Further, he said even if he could get the needle in, there was a risk of long-term damage to my spine.

“If you’re not having any problems with your back, I wouldn’t recommend it,” he told me.

My OB-GYN –- the one doctor in the practice that I did not trust (of course he was the one on duty when my water broke!) -– arrogantly offered to “get the needle in there.” In the end, the decision was mine, and I opted to trade the sound of my baby’s first cries for continued spinal health.

As R’s birth approached (he was a planned C-section), I contacted my orthopedist to find out if there were any anesthetic alternatives – other than an epidural -- to general anesthesia for a C-section? However, my orthopedist’s receptionist just didn’t get it. We went around and again, with her not only claiming ignorance as to why I should be calling, but also inferring that perhaps pregnancy had rendered me an idiot!

By the fifth “I don’t understand what you’re asking,” I snapped:

“And I don’t understand how you can work in an orthopedist’s office and NOT understand the nature of my question! Let me speak to the office manager.” A brief conversation later, and my doctor was on the phone, telling me what I needed to know.

These scenarios drive home the point: When it comes to your health, you must advocate for yourself. Here’s how:

Make a list: Before your appointment, write down the questions and concerns you want to discuss with your doctor.

Be honest: Your doctor can’t help you if you don’t tell the truth. Be upfront about your diet, lifestyle and any other health-related information.

Be assertive: Your appointment is your time with the doctor. Do not allow yourself to be rushed. Refer to your list and make sure you get all the information you need.

Bring a friend: If you don’t feel comfortable or confident that you can advocate for yourself, ask a trusted friend or family member to come along to ensure your questions and concerns are addressed.

Remember: When it comes to your health, it’s all about you. So, speak up and take good care.

Searching for choice where there is none

I have been grossly remiss in posting an update about my family’s unemployment saga, so please bear with me as I bring you up-to-speed since this post .

Mark was hired as an IT analyst for a consulting company in mid-August 2010. Although the consulting company (surprisingly) had excellent benefits (reasonably priced, quality health care and paid time off, among other perks), we were living quarter-to-quarter (and sometimes month-to-month) wondering whether his position would continue to be funded by the on-site client.

In December, Mark was recruited by another consulting company to return to his passion – web analytics. The salary was higher, but the cost of health care benefits negated that (more on this in a moment). However, this new position was funded through the end of 2011 -- finally ensuring some semblance (albeit limited) of job security – so Mark accepted. Such is life in a job market where contract jobs are the norm, instead of the exception. (No, the recession is not over!)

But, back to the health care issue.

Throughout our life together, Mark and I have weighed more than a few job offers and, all things being equal, the decision always hinges on the health care plan – its quality (co-pays, deductibles, physicians’ network, etc.) and its cost.

With this new position, when we calculated family coverage for medical, dental and vision, the annual bill totaled about $22,000.

After I picked my jaw up from the floor, I embarked on a quest (a futile one, I suspected) to find an alternative health insurance choice that would offer quality and affordability for our family.

Right out of the gate, we knew Mark’s health issues would render him uninsurable outside of an employer-sponsored plan. This was confirmed by several insurance brokers I met during my search. In addition, J and I both have pre-existing conditions (if you are a Maria Talks Back reader, you are familiar with mine), so that was an additional factor to consider.

I was advised to apply for Blue Cross and Blue Shield’s well-advertised Blue Advantage plan, despite knowing that Mark would be denied outright. Those in-the-know said we could insure Mark through his employer and then compare the cost of Blue Advantage versus the employer’s plan for the kids and me. These same knowledgeable folks also said that BCBS was the most likely insurer to accept us since it is “more lenient” with pre-existing conditions.

When the much-awaited decision from BCBS arrived, only R qualified for BCBS’s “preferred” rate of $165/month. My monthly premium came in at $980 and J’s was $545 – and this was just for medical coverage.

Plan B: Since Mark was denied outright and J and I were “up-rated,” we were eligible to apply for Inclusive Health, a program in North Carolina that provides health care coverage to people “…who do not have access to an employer health plan and face higher premiums due to a pre-existing medical condition.” Inclusive Health’s rates were a bit lower ($694/mo for me; $353 for J). However, none of our doctors were in-network and there was a cap on how much the plan would pay out.

In the end, our choice was no choice at all. We are going to pay $22,000/year for health care coverage.

That decision made, a new wrinkle emerged.

The effective date of coverage for the new insurance is the first of the month, following 60 calendar days of employment. However, due to unforeseen circumstances, Mark’s start date changed from Jan. 31 (which would have initiated medical coverage on April 1), to Feb. 2 (which will start coverage on May 1). Therefore, by the space of two days, we will exceed the magical, mystical 63-day window that all health insurance companies use before subjecting you to their dreaded pre-existing conditions restrictions. In laymen’s terms, if we are uninsured for more than 63 days, the new insurer will refuse to pay for any claims that relate to health issues for which we have already received treatment during the first year of coverage. This basically means that we would pay for health insurance, but could not use it.

So, now we’re electing COBRA -- at $1,440/mo (just for medical) – to avoid the pre-existing conditions trap. Will we get our money’s worth for that coverage? Not likely. But, again, we have no choice.

Are you seeing a pattern here?

Walter Cronkite once said, “America's health care system is neither healthy, caring, nor a system.”

True ‘dat!

And yet, Americans accept the rules that health insurers set, jumping through their flaming hoops without question. I liken it to an abusive relationship where the abused doesn’t know that a better life is possible, and continues to suffer.

Health care reform may not be the perfect solution, but it’s a start. The alternative is to keep things as they are – and that choice is unacceptable.

Still the one

February 1983 --

Mark’s ship, the USS Forrestal, had recently arrived at the Philadelphia Shipyard for extensive renovations. After two years of prolonged absences, we were now a two-hour car ride apart, and planned to see each other every weekend he was not on duty.

Valentine’s Day weekend was the first such opportunity, but Mother Nature had other plans as a blizzard arrived on Friday, crippling the East Coast from Virginia to New England. Regardless, Mark traveled by train, bus and – eventually -- his own two feet, to get to his parents’ house in Irvington, NJ. But he didn’t have a car to drive to West Orange, so the rest was up to me.

The storm was gone by Saturday morning, and the sun shone brightly. Roads were slushy but passable. As Dad and Anthony shoveled the driveway, I anxiously waited for this final barrier between me and my Valentine to be removed.

Belatedly, Anthony paused with a puzzled frown. “Wait a minute, Dad! It’s Saturday. Why are we doing this?”

“Because your sister’s in love!” my Dad said with wry exasperation. Shaking their heads in unison, the scrape of shovel-removing-snow resumed and, before long, I was on my way.

I don’t recall the restaurant where we ate dinner that night, but I do remember Mark double-parking the car en route to dash into a store. He returned with a perfume bottle filled with pink carnations. I still have the bottle – with its heart-shaped stopper -- on my dresser.

Back then, I had no idea that our love would continue to blossom and deepen as we have shared the trials and triumphs of our life together. The song, Still the One by Orleans, sums it up nicely.

We’re still having fun, and you’re still the one.

Happy Valentine’s Day!

Paging Dr. Mary

It never ceases to amaze me – how the simplest, seemingly effortless exercise can make such a dramatic improvement in my flexibility, muscle strength and, yes, quality of life.

When I started seeing Doug in August for my hip , I never imagined I could feel this good and, more importantly, be in control of my body.

During the past five months, he has discharged me three times – once for my right hip, a second time for tendonitis in my left shoulder and finally, yesterday, for my right knee.

Doug’s combination of targeted massage and an exercise program designed specifically for my multitude of issues has yielded tremendous results.

Yet, sometimes, a simple suggestion from a good friend can also be effective.

You may have read about my friend (and twisted sister), Mary , in previous posts. Although we are both scoliosis patients, we are as unique in our respective skeletal muscular issues as our DNA. But that doesn’t stop us from comparing medical notes.

Recently, Mary told me how she has strengthened her knee by using it. She ascends stairs without aid of the handrail, and also does knee lifts while sitting on the edge of her bed -- simple stuff that made me realize I’d been “coddling” my own knee.

The proof came just one week after I incorporated these changes into my day. I noticed an improvement in strength and flexibility, not only in the knee but also my hip. Then, when Doug tested my hip strength he noted it was “much better.”

As he discharged me yesterday, Doug said he had a feeling he’d be seeing me again. “But let’s make it a good, long while from now,” he joked. Armed with his email address and Mary’s advice, I’m off to a good start.