Camptocormia (bent spine syndrome or BSS): Looking for others

I do have a physical therapist who really has no knowledge beyond what I have provided for her through emailing her articles that I was given by my Utah doctor. She does support my exercising and provides me with input about how I exercise based on her knowledge from her usual clients and education. Personal experience for my particular BSS has been working to build up the secondary muscles to provide some support. I was told that the atrophied muscles won't rebuild much. As I said, I work out my entire muscles sets (there are 9) through body pump, cardio sculpt (much like jazzercise or aerobics with the addition of light hand weights and yoga-style classes. I would be interested in finding a doctor who had real knowledge about Camptocormia (BSS) and help me discover if mine is caused by something other than what has been considered.

Teresa, the "falling forward" I referred to was my back muscles being unable to hold the torso part of my body up. I found that when I walked, my torso would fold over as those back muscles couldn't do the job. My workouts have been useful in slightly addressing that problem. But it still happens when I walk around my house or am doing chores out in my yard.

@laurie386 Have you tried any physical therapy? It sounds like a back muscle weakness from your description. I am a horse owner and nothing works back muscles like riding at a walk because you compensate for all the movement of the horse. It would likely cause a lot of fatigue and soreness at first, but then strengthening if you do it right with good posture. There is equine assisted physical therapy. It might be something to discuss with your doctor.

Jennifer, thanks for your comment. I hadn't thought about an equine assisted physical therapy. I do ride (not lately, though). An earlier respondent to another person did state that she was using riding her horse at a walk to help build those tricky back muscles. To be clear, my back muscle weakness is from para-spinal muscle atrophy. I have been told by my first neuromuscular physician that those muscles can't be built back to what they were, but can achieve some strength. I will investigate the equine therapy direction. We do have a couple of those businesses in my area. Thanks again!!!

@laurie386 I'm guessing the atrophy may be from nerves not working that service those muscles from your doctor's comment. You won't know unless you try, right? I went through cervical spine surgery and built core strength back riding my horse at a walk. I have talked about that before on Connect. It helps me have good posture which in turn supports my spine and probably prevents some issues. My surgeon recommended maintaining core strength when I asked how I could avoid needing his services in the future.

Parkinson's Disease NO, Camptocormia & Spinal Muscle Atrophy YES

Hello,
I have been working with a highly respected orthopedic surgeon for the past several years, thinking that my multiple spine issues were the primary issue. See below ‘Background Discussion and Detail’. My spine has remained flexible; I am not gaining weight, though I eat generous portions of nutritious foods; my buttocks are not enlarging with exercise. In the past six months, I have developed a bent-forward posture. The surgeon had me see a neurologist for Parkinson's Disease and muscular dystrophy testing. The testing so far has not found any neurological issues. The surgeon is totally against surgery as he cannot find the source of my condition. He could perform the surgery, 8 hours, but the surgery would have a high chance of failure as my buttocks are not strong enough, the rods would need to extend into the pelvis, and these have a high rate of breaking, screws failing, etc So he will not do the surgery- Hard stop..

My questions include:
Has anyone had this experience or something like it? Is it necessary to know the cause of the symptoms before doing surgery? My ‘bentness’ appears to me, at least, to be worsening rapidly. How low can I go? Looking at my feet most of the time when I go out for a walk is not inspiring me to do more. Any thoughts or comments are greatly appreciated.

Background Discussion and Detail

Thank you for consulting ABC Neuroscience Specialists. Today I am writing to you in follow-up on your patient J Smith. As you well know, he is a 75 y.o. male who has had symptoms of low back pain, bilateral hip pain, forward-pitched posture, and a chronic left foot drop. Recall that the patient is status post L5-S1 ALIF, performed by Dr. Jones on June 3, 2020, for treatment of lumbar flat back syndrome, lumbar foraminal stenosis, and left foot drop. The patient was last seen on 3/17/2025 and was instructed to seek a Neurology consultation for possible Parkinson's evaluation.

Patient is following up in clinic reporting concerns about his posture. His posture continues to decline as the patient notes having a significant forward lean. He can straighten himself up by holding onto tables, chairs, etc., and his LSO Brace helps with walking. He is managing himself with Tramadol, Acetaminophen, and Gabapentin. He notes that he feels fatigued quickly while walking despite no changes to his physical activity. He eats an appropriate amount of protein.
A neurologist follows the patient.

Past Medical History:
Diagnosis Date
• Arthritis
Back pain
• spine issues - Kyphotic deformity of lumbar spine due to advanced DDD, scoliosis, sciatica pain, etc.
• Flatback syndrome
Diffuse fatty atrophy of the posterior paraspinal musculature of the thoracic spine most processed and severe at the T8 and T11 to T12 levels. Asymmetric atrophy of the trapezius musculature and rhomboid musculature.
Fatty atrophy of the paraspinal musculature is characterized by the replacement of muscle tissue with fat, often linked to chronic lower back pain and muscular degeneration
IMPRESSION AND PLAN:
Suspected muscular dystrophy
Camptocormia
S/p L5-S1 fusion by another surgeon

Mr. Smith is a 75 y.o. year old male who calls in virtually today. It was my pleasure to have seen and spoken to Mr. Smith. In our visit today we've had a chance to go over my understanding of our patient's current condition, the natural course history without intervention and various interventional options. Review of his imaging demonstrates convex left scoliosis. The patient had received an ALIF L5-S1 in an attempt to correct a more global trunkal misbalance.

Leading clinical reasoning for the patient's symptoms is muscular dystrophy. In any other case of this scoliosis, we would likely proceed with a multilevel fusion surgery, however in this case this surgical procedure would be ill advised. I recommend he follow-up with Dr. Jones Neurology, who at this time suspects the patient to be afflicted with a form of muscular dystrophy, but not Parkinson's.

I discussed with Mr. Smith at length the benefits of riding a recumbent stationary bike. This is an ideal exercise which strengthens leg and buttock muscles, trains the automatic gait cycle, and improves general cardiovascular health. A stationary bike is a stable device that carries no risk of endangering the spine. I recommend a bike that is easily adjustable for a perfect seating posture and has a step through between the seat and pedal unit to avoid climbing. Aim to bike for 30 minutes daily at a pace fast enough to dampen a t-shirt. We also discussed the benefits of swimming, specifically breast stroke. This is an excellent form of exercise that builds muscle in the shoulders and buttocks in addition to promoting improved spinal alignment. I recommend 30 minutes of dedicated swimming time 3-5 times weekly. I discussed with the patient at length the benefits of swimming and or a recumbent stationary bike for 30 minutes daily as great exercise options.

Hello @comeback
I have been riding a recumbent bike for 10+ years.I assume it helps, at the very least, for cardiovascular health. My orthopedic doctor always has this on his notes as a new item. We live in a soggy part, left coast, of the country, and this deters me from going out for a walk. The stationary bike was the solution. I tried swimming for about a month, but there was always a longish wait to get a lane in the pool. I am not a natural swimmer, so I am easily deterred. I am thinking I will give it another shot.