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.