SpineCurve

Spinal Deformity Support Group Meetings

If you live in or near the Chicagoland area, the department of neurosurgery at Northwestern Memorial Hospital has started hosting a spinal deformity support group again. The group is for adults with spinal disease and their friends and family. I went to October's meeting and there were over 50 people in attendance. Most had had one or more surgeries and the rest were contemplating whether surgery was a good option for them (or their loved one) or have never had surgery and are living with managing a spinal deformity disease. Dr Tyler Koski from the department of neurosurgery was the guest speaker.

I attended this support group prior to my own surgery and found it so helpful to get good medical information about spinal disease and its treatment and talk to other people who had been through it.

I highly recommend the group if you can attend. Dr. Melinda Ring, medical director for the center of integrative medicine, is the featured speaker for next month's meeting. Meeting information is as follows:

When: Every 2nd Monday of the month- November 9th is next meeting

Time: 6-7PM

Where: Northwestern Memorial Hospital, Galter Pavilion, 8th floor, room 234

   675 N St Clair, Chicago, IL 60611

For more information you may contact Kristin Smith, APN at 312-695-8143 or Ksmith1@nmff.org

For more information about the Department of Neurological Surgery click here.

3 Reasons for Adults to Opt for Surgery

An adult with a spinal deformity, be it an idiopathic scoliosis from the teen years, a degenerative scoliosis curve as a mature adult or kyphosis, there are 3 conditions that a surgeon looks for in order to consider a patient a good candidate for a spinal fusion.

1. Pain- Is the person experiencing a great deal of physical pain and is that pain keeping them from normal daily functions?

2. Progressive Deformity-is the curvature increasing and at what rate is it increasing?

3. Spinal Compression is taking place.

If any one of three conditions exists, and in most cases there is a mix of more than one, a person can reasonably consider a spinal fusion surgery to treat their condition. It should be the last effort taken. If a condition can be treated with physical therapy or injections, it is much more preferable than undergoing a spinal fusion. The reasoning is that the surgery itself is a large undertaking and requires a person to be in good health to recover well from it, and once a spine is fused, it alters its functioning for life. Spinal fusion does not completely eliminate pain and curvature. It can provide significant relief and correction for an improved quality of life. 

Why I Love Pilates for My Scoliosis

I love pilates for my back because it helps me keep my muscles in tack. The pain I have incurred from my scoliosis has always been muscular. When a muscle is stretched, it is in a weakened position and more prone to strain and injury. So when the spine is abnormally curved it causes an imbalance of the surrounding muscles-some are stretched and weakened, others are shortened and tight.

In my experience, I have found practicing pilates to be the most effective way to address these muscular imbalances. I do take private instruction from certified pilates instructors. This has made all the difference because my instructors, knowing about my condition, help design a program that addresses my specific issues. Just popping in a DVD or dropping into a mat class doesn't cut it for me and I tend to injure myself engaging in such activities. With scoliosis, I have found that I cannot do a one size fits all model of exercise. Rather I need to customize what I need at any given time to help keep my muscles moving properly.

I have used Body Endeavors at 1528 N Halsted. My instructor, Sarah Schaub, is a former dancer and currently on maternity leave, so now I am working with Barbara Katz. Barbara also has scoliosis so she is a perfect instructor in addressing the various issues I have. I highly recommend the studio and the instructors. You can get more information about them at their website here.

Flexibility of Movement

When you have a spinal fusion you lose flexibility of you back-the ability to bend and twist your spine. Depending on how many vertebrae are fused, where the fusion takes place (cervical, thoracic, lumbar, sacral) in your back, and the length of time following surgery will affect how much flexibility is lost. Not knowing how much flexibility I would lose due to surgery was a major concern to me. I enjoy being physically active and taking dance class and I was afraid I would completely lose the ability to bend and twist my back.

During physical therapy I was taught how to do everyday tasks without having to bend over. Things like brushing my teeth and washing my face, household chores, getting in and out of a car, and driving.

To brush my teeth, I would spit in a cup instead bending over and spitting into the sink. I would use a washcloth to wash my face instead of bending over and using water and cleanser directly over the sink. I mostly used shoes without laces that slipped on and when I needed to tie my shoes, I would sit down and put my ankle on the opposite knee and ties my shoe from there. Getting in and out of a car depended on if the seats are low-where you need to crouch to get in- or high-just sit right down. Because my fusion is pretty high up in my back, I could not crouch. I had to lean to the side to get around and into a car with lower seats. I was taught how to use my legs to lunge and use my torso as a whole unit in order to not use my back muscles for opening doors, getting dishes out of the dishwasher, sweeping the floor, etc.

Of course, right after surgery everything was painful and my movement was very restrictive. Five years out I feel like I have a great deal of flexibility. Because I am not fused into my hip or in my lumbar spine, I can bend my back pretty normally. I cannot crouch and I cannot twist as far and neither have significantly affected my ability to do what I want. I DO have to limit how much I use my neck to look down. Too much looking down strains my T1, T2 vertebrae (where my fusion starts) and surrounding muscles.  It strains to the point where I cannot move my head and I get very bad tension headaches that feel like a vice grip on the back of my head and neck.This is something I have to continually monitor to prevent injury.

Getting Back to Normal

My doctor said that recovery moves in phases- one week after surgery you're questioning why you did it; three months later you think it wasn't so bad; and one year later you think it was a good idea. It really did take me one year to get my full energy and activity levels back.

I went back to work after the 12 weeks of FMLA and was able to make it through a 9 hour day with at least 1 to 2 periods of laying down to rest for 5-10 minutes each. I would go to the gym and do light exercises-mostly stretching, water aerobics, walking on the treadmill or elliptical machines a couple times a week. It was the middle of winter in Chicago, so I needed and indoor place to exercise. I went to physical therapy several times a week, too. I did not have enough energy for anything outside of work and physical therapy/exercise. I still spent the majority of my time resting at home. My husband did the housework and kept me company.

It was an adjustment for me, being home so much. I was used to being very active and involved in all kinds of events. Someone who had been through 3 spinal fusions in 6 months had told me that you find out who your friends are and she was right in that for almost a year, you cannot keep up with them. It's not that they don't care. They just don't understand if they have never dealt with a major, chronic illness that requires extensive recovery.

I had tremendous support from my family and church. My dad, grandmother, husband and my minister's family were at the hospital for the entire time of my surgery. My mom came for 2 weeks to live with me and help take care of me when I came home from the hospital. Members from my church came to visit me in the hospital and brought us meals for a month since I was not able to cook.