When it comes to back pain, it can be hard to see the forest for the trees at times. For Millie Scales, the “trees” were images that showed a tumor, a cyst, and a tethered spinal cord. But her pain turned out to be caused by another problem that, once fixed, had Millie back on her feet and playing with her grandchildren.
When Millie was in her twenties she was diagnosed with a rare malformation of her spine called a tethered cord. Normally, the spinal cord hangs freely inside a bony canal within the spine, where it can move and adapt as a child grows. A tethered cord is attached, usually at the bottom of the canal, and as the child grows the spinal cord can become over-stretched and damaged.
As Millie grew into adulthood, she began to show signs of cord damage including problems with her bladder and hyperactive reflexes. Her doctor ordered an MRI. “At that time I had a tethered spinal cord, a cyst inside my spinal cord, and a tumor on the outside of my spinal cord. I also had congenital scoliosis,” says Millie.
That was in 1992 and shortly after, Millie had the first of several somewhat successful surgeries to untether her cord. The cord damage was irreversible but Millie learned to live with it.
Then, in 2005 at the age of 44, new symptoms began to appear: back pain and weakness in her left leg. Over the course of the year, these problems grew worse, she started to lose her footing often and even fell a few times.
“I didn’t want to do anything. I didn’t want to go anywhere. The pain was just horrible, all in my back.” Her doctors told her they had already done all they could do.
“I was just really down one day and my brother-in-law said, ‘Millie, don’t stop. We’ve got the internet now. You can find the best doctor in the world.’ And that is what I did.”
Millie found Neurosurgeon, Dr. Michael Kaiser from the The Spine Hospital at the Neurological Institute of New York.
“I read that he only does surgery as a last resort. He’ll do anything else first that might work,” she says. “After I sent him an email, he actually emailed me back and asked for my phone number. He himself personally, called me, and that blew my mind. He was this big New York doctor that I’d read all kinds of stuff about, that everybody in the world knows him, and he was calling me.”
Millie and her husband flew to New York to see Dr. Kaiser in January 2006. He was awesome,” says Millie. “He has a great sense of humor. He’s just wonderful. He made us feel at ease right away.” To her surprise, Dr. Kaiser told her he didn’t think her back pain was caused by her tethered cord or the other spinal problems she had known about.
“I believe her primary complaint of low back pain is mechanical in nature and due to degenerative disease in her lumbar spine that is most severe at the L2/3 disc space,” Dr. Kaiser wrote after their visit.
There are a total of five numbered vertebrae in the lower back collectively referred to as the lumbar spine. The L2/3 disc space is an area between two of the vertebrae, specifically between lumbar (L) vertebrae #2 and #3, that contains a jelly-like substance (the disc) that helps absorb shock. Millie also had degeneration between L3 and L4.
The spaces between the vertebrae are considered joints, and with age, these joints like all the others in the body, are subject to wear and tear. In some people the degeneration is greater than others and results in a severe decrease in cushioning between the vertebrae, a build up of bony spurs and in the case of the spine, narrowing of the canals that hold important nerves. All of this together can be the cause of a number of symptoms including back pain, weakness in the legs, and numbness and tingling in the feet.
On January 9, 2006 Dr. Kaiser performed an operation on Millie to relieve the pressure on her nerves and to fuse lumbar vertebrae 2-4 together. The surgery went well and Millie returned to her home in Indiana.
A month later she was back on her feet and back to all her normal activities, including spending more time with her grandchildren. She sent a note to Dr. Kaiser,
“I am writing to let you know I am doing very, very well. I feel that you have changed my ability to enjoy life again. I am so amazed that my pre-surgical pain is gone !!!! I appreciate what you have done for me more than you will ever know.”
Then, in February of 2013, approximately seven years later, Millie returned to New york to see Dr. Kaiser. Her back had begun to hurt again. She was feeling weakness in her leg, and once again she had started tripping.
Dr. Kaiser ordered an MRI and found that once again, Millie was suffering from spinal degeneration, this time it was located below the fused area of her spine and new nerves were being compressed. Dr. Kaiser performed another surgery that extended Millie’s fusion further down her spine.
Just as before, Millie’s surgery went well, her pain was gone and five days later she began a walking program to build up her stamina. Six months later she was back to her usual routine. Millie says:
“With the first surgery I had with Dr. Kaiser in 2006 — of course, I was nervous going into surgery. My mom, daughters, and husband were there. I remember walking into surgery not wanting to look back because I knew I’d break down. This time, it was just my husband there. I didn’t have that fear just because of the way things went so well the time before. I didn’t cry. I just didn’t have a fear and said, okay, let’s do this. Let’s go, and it was just that simple.”
In 2014 Millie gave us an update:
“I am walking three to five miles at a time and so enjoying my family activities. I’m even enjoying shopping. I’m cleaning my own house. I’m going to all my grandkids’ sports: all their wrestling matches, softball, gymnastics, anything. I can do all of that with my grandkids now. I’ve gotten my life back!”
Originally published Feb 14, 2014
Updated May 30, 2017