Will my quality of life be OK many years after adolescent scoliosis diagnosis? How does it affect my loved ones? Can I be too old to get it fixed? Are there alternatives to surgery?
A week or so ago, I saw Mary Lou, a 73 yo woman from Hendersonville, NC back for follow-up for her severe scoliosis. Her curves have not progressed since her last visit, but her quality of life has continued to worsen, with husband reporting that she spends 70% of her time in a very special easy chair, because of her back (see YouTube Video).
He shared that this has really affected HIS quality of life, and their quality of life as a couple, since she has become so inactive. While she might be considered a “success”, since her scoliosis has not continued to progress, her pain, and activity level has continued to get worse, and now she feels like she may have waited to long to get something done with her age now in the 70’s. This is often how I see quality of life change for my older patients who had adolescent idiopathic scoliosis followed by some adult progression: they do fine for many years, with slight worsening over many years. Then, at some point, “the wheels come off the wagon” and their pain level often goes up, and activity level goes down much more rapidly.
She wrote up her life story of her scoliosis, which is quite interesting (shown below), especially as it pertains to the life-long affect of scoliosis — some patients go for many years being very active, but then experience a sudden drop-off in quality of life in later years, in some cases associated with leg symptoms such as weakness, or sciatic pain or trouble standing and walking. These symptoms are often due to the degeneration on top of the deformity, which progresses, and can cause increasing lumbar spinal stenosis. Her rib discomfort discussed below may be because of her rib cage now hitting her iliac wing — something that actually is helping to prevent further collapse of her scoliosis.
This is one reason why earlier intervention during the adolescent and young or even middle age adult periods may help suffering later in life, while providing better posture and self image. For our many children, adolescents and younger adults that we straighten up each year here at Hey Clinic, these patients will not have that “black cloud” of future progression of curve and/or decreasing quality of life hanging over them. While it may sound great that Mary Lou was quite active for over 50 years after her scoliosis diagnosis, being confined for most of the day to an easy chair in her 70’s is not the kind of quality of life most of us would want for ourselves or for our spouse or child or parent.
Trying to understand the LONG TERM effect of scoliosis and kyphosis is hard, since few of us get a chance to meet someone like Mary Lou, much less do very large long-term follow-up studies to really assess quality of life over an entire lifetime. For example: scoliosis bracing has been shown to have some effect for some patients at least for making surgery less likely before an adolescent finishes growing. However, when you are considering bracing for your child, you aren’t just interested in the outcome at age 17 or 18, but at 28, 38, 48, 58, 68, 78, 88, and even 98 year old! The game isn’t over until you’ve gotten through your whole life.
For some patients, sometimes surgery later in life is not even an option, due to other health problems (cardiac, pulmonary, renal, or severe osteoporosis.) In Mary Lou’s case, since her quality of life was failing, I did take a lot of time with her and her husband, and reviewed all of the risks and benefits of the possible surgery to help her. This really helped her and her husband to understand the reality of the surgery, recovery, and potential outcomes. People really appreciate our generous appointment times, so they can get their questions asked, and have plenty of time to allow me and my team to get to know them, and their story, and review all their imaging with them. Mary Lou opted not to move forward with surgery at this time, in part because she feels like she is too old to handle the big operation. This is absolutely fine with me — we actually emphasize conservative therapy for scoliosis. It’s just so important to understand your treatment choices in detail. We do offer surgical treatment in cases where conservative measures are failing, and quality of life and/or curve progression is worsening, and patients are medically able to handle the surgery. We are also happy to continue to follow Mary Lou over time with repeat X-Rays and potentially try other conservative measures. If her leg weakness and trouble walking progresses, we will work up her lumbar area with an MRI. If that shows a severe stenosis (nerve pinch), that may influence her treatment choices moving forward. Bone density studies (DEXA scans) can often be helpful for your scoliosis doctor / surgeon to assess your bone quality for handling the surgery, and holding the hardware. Osteoporosis can sometimes be reversed with special medications given over several months if surgery is indicated, to strengthen the bones.
Enjoy her life story and the story of her family! Thanks for sharing Mary! Dr. Lloyd Hey, Hey Clinic for Scoliosis and Spine Surgery. http://www.heyclinic.com
Three Generations of Scoliosis
by Mary Lou
Mary Lou and two of her three daughters and a granddaughter have scoliosis
Original account dated April 18, 2013 – Page 1-3
Update completed February 17, 2015 – Page 3-5
I was born in Florida in 1941 and scoliosis came into my life around 1952, right when polio was rampant. My parents took me to Emory University Hospital in Atlanta, where the doctor believed I had contracted a mild case of polio. Back then the best place for polio rehab was Warm Springs, Georgia, at the residential treatment facility founded by Franklin D. Roosevelt. I was there for about a month and for the entire time, 24/7, I wore a back brace–a corset of sorts with a rod sewn in the back and head traction from a rod attached to my brace –and was bedridden almost the entire time. For a precious four hours a day I was allowed out of bed, albeit in a wheelchair. At this point I had experienced no aches or pain from my condition.
After a month of this the Warm Springs doctors decided it was best to have a spinal fusion. My parents refused so I was brought home to central Florida. Soon after my mother and I spent a month in Atlanta as I got treatment from an orthopedic surgeon there. He put me in a body brace which, as I understood, moved the weight of my head and shoulders to my hips, thus taking the pressure off my spinal column. In Atlanta I also did rehab exercises twice a day along with an ultralight heat treatment. After a month of this I was allowed to go back home to Florida, where I continued the exercises and heat treatment as part of my daily routine for three or four years. I continued to be free of aches or pain.
At age 15 I left Florida for a boarding school in Virginia. Since nobody else had a back brace, my brace went into a bag and under my bed. And forget the exercises! Puberty and teenage years are so hard on a girl. Life went on for me with no medical intervention of any kind and I continued to be free of aches or pains.It should be noted that by this time, I am not sure when or where, it was determined that I did not have the disease of polio but rather a curvature caused by my spinal abnormality.
Like many young women in those days, I went off to two years of college and then in 1962 I got married at age 21. Almost immediately I had one daughter, then two and a half years later, another. There were no problems at birth but at two years the second daughter had to have pectis excavatim surgery due to her chest sinking. Around age 10, she was diagnosed with scoliosis. By this time (c. 1976) we were living in Hendersonville, in western North Carolina and we kept the roads hot to the Duke scoliosis clinic in Durham every three months for three years. Since her curve never changed and she had no aches or pain, they discharged her after those three years with no further intervention. She has had no scoliosis-related problems since then and is now age 47. She has no children.
Let me back up a few years to 1970, when we were living in Ft. Lauderdale, FL, where I had daughter number three. When she was 10, doctors decided that she had scoliosis in her waistline area. Eventually it was discovered that, instead of scoliosis, she had spondylolisthesis in her lower spine. The doctor was prepared to do a spinal fusion on her but at practically the last minute, discovered that her main problem was a herniated disc, aggravated perhaps by years of cheerleading. She had surgery for this at age 17. Now age 42, she has had backaches for most of her adult life when she “overdoes it”, but has also been very active (skiing, running, mother to two young children).In 2004 she gave birth to her first child, a daughter. There were many problems at birth and the child got no oxygen for the first eight minutes outside the womb. She suffered from global development disorder and now at age 9 remains severely impaired intellectually, though she is physically active, living at home near Denver, CO and enjoying school.It has not been an easy time for her parents and in addition to her many problems, she has just been diagnosed with scoliosis at age 9. Her curve is 32 degrees and surprisingly she has not protested at all to wearing her brace.
Apparently untouched by scoliosis is my first daughter, who will be 50 this year: She has been very physically active since childhood (horseback riding, skiing). She never had a sign of scoliosis nor has her daughter, my other granddaughter. This first granddaughter, now age 21, also has been very active (gymnastics for several years in her early teens) and has a very healthy back.
As for me, I understand that because I have a double curve, I was “lucky” in that it kept my body in fairly good alignment. I was able to have all three of my daughters with no problems, I taught mentally handicapped teenagers in the public school system for over 20 years and, somewhere in there, I actually did some waterskiing.I retired from teaching in 1999 and took a part-time job in a bookstore. This required a combination of sitting and standing which caused me to ache on the days that I worked. Since then I have volunteered with our local hospital two or three days a month and work at our church thrift shop every Monday. Both of these volunteer jobs are sedentary.
My “back” life has changed a good bit in the last few years. I find that if I have to stand for any period of time, it helps to have something to lean on. When I have to walk a lot I rely on a cane to relieve the pressure and when shopping I always get a wheeled basket/cart and lean on it as I walk. I still do not have “sharp” pains in my back but often by the end of the day my lower and most severe curve will cause aching in my left hip, which I can relieve by sitting. At this point I am very sedentary but will start physical therapy and hope to build up my upper core. I love to travel and need to make sure to continue the exercises and bracing, to give me the ability to walk more than I do now. I feel very fortunate to have managed as well as I have, and hope to maintain this degree of mobility in the years to come.
Update as of February 17,2015
It has been 22 months since first visiting Dr. Hey On February 2, 2015, I returned to the Hey Clinic; here are details of that visit and its outcome:
* I reported that despite good intentions I did not pursue physical therapy as Dr. Hey prescribed in April, 2013.I did not wear the lumbar support brace which he provided because it was too uncomfortable for my back.
* Nevertheless I have been able to travel, including a two-week visit to Ireland and Wales and several trips to visit family in Denver, Colorado.In airports we were always provided wheelchair transportation by an escort from ticket counter to plane. Even so, travel is becoming increasingly difficult and tiring because of the time spent in one position. Our last family trip to Denver was by car because we were unable to book direct flights and changing planes is taxing, even with escorted wheel chair service.I was unable to drive on the Denver trip but using my cane I did get out and stretch my legs and walk to rest rooms en route.
* The only pain in this 22-month period has been in my rib cage on my right side, beginning last October. This rib discomfort is a dull ache and is my most bothersome symptom; at times, typically twice a month, I take hydrocodone in order to sleep. Since early February, 2015 I have had to wear Salonpas heating pads on this part of my rib cage, which from the onset of my scoliosis were rotated to my back.
* I am increasingly sedentary and have difficulty rising from a seated position due to weakness in my knees and thighs.
* Because of my symptoms it became necessary to stop volunteering several days a month at our local hospital.As a front desk greeter too much standing and walking was required.
* The good news is that tests done on Feb. 2 showed no change in my scoliosis measurements and no problems with nerves.
* At my most recent visit Dr. Hey described in detail the potential benefits and risks of spinal surgery which could help my condition, especially in the years after recovery.My husband and I had many questions which Dr. Hey addressed and I signed an informed consent form.I returned home to consider the option of surgery, and after considerable deliberation I have ruled it out due to my age, 73 years and 7 months.
Instead I am recommitting myself, with greatly increased motivation, to physical therapy.A PT plan was prescribed by Dr. Hey as both preparation for possible surgery and an alternative to surgery.It consists of core strengthening and HEP complemented by wearing a molded TLSO (Thoracic Lumbar Sacral Orthotic) scoliosis brace.I have met with a physical therapist, someone who has helped me in the past with other conditions, and scheduled therapy twice a week. She is following the prescribed PT plan. On days when I am not with her I will use a pool at a local retirement community.
A week or so ago, I saw Mary Lou, a 73 yo woman from Hendersonville, NC back for follow-up for her severe scoliosis. Her curves have not progressed since her last visit, but her quality of life has continued to worsen, with husband reporting that she spends 70% of her time in a very special easy chair, because of her back (see YouTube Video).