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

What a wonderful group to find! All of us dealing with this camptocormia (also suggested to be named Bent Spine Syndrome when not associated with MS or MD or Parkinson's) and sharing our experiences in trying to be active in our lives. My BSS wasn't clearly diagnosed until 2022, but I noticed the trunk of my body "falling" forward in 2017. According to my physician, my BSS is probably inherited. She did a DNA sample and found some "rogue" genes that were probably the cause, but she wasn't 100% sure. I do have one of the genes needed for MD to be either passed on to my offspring (I do not have those) or to affect me. Two of those genes are needed for that condition to appear. The whole thing is very hard for my self-concept as I used to have great posture...well, I still do when I stand perfectly still. I started working out in group exercise at a local fitness center by lifting weights (Les Mills Body Pump) twice a week. Then I retired in 2021 and chose to ratchet up those workouts and added 3 more workout sessions during each week. I currently work out 55 minutes 5 days a week. A second opinion physician I saw in 2022 told me the working out was great because it will keep me from being confined to a wheelchair when I am 75 (I am 68). I also added in using hiking/trekking poles when I walk distances as I cannot walk for long in a posture that is friendly to getting air into my lungs. I live in Colorado so the hiking poles are a thing.

Thank you for the info on the vibration plates. Always useful to get a personal report on possible alleviators of our common affliction.

Hi, Teresa. I am barging in on your response to wiserranter regarding the Mayo Clinic. As of Feb 2022, I was officially diagnosed with Camptocormia/Bent Spine Syndrome. My next to last doctor (neuro muscular physician) said the only cause she could see for it was genetics as there are some outlier markers in the DNA test she took. You told wiserranter that the Clinic might have treatments for Camptocormia...or were you referring to the CP that wise has, also. Would you happen to know who would be a direct contact at Mayo that I might be able to talk with regarding my particular case of Bent Spine Syndrome? Thank you for your volunteer work and thank you for any info. laurie386

My adult son has camptocormia resulting from pseudo Parkinsonism that he developed as a result of long-term treatment with Neuroleptic drugs prescribed for schizophrenia. Check with Mayo, however, I believe that focused ultrasound Botox injections in specific abdominal muscles has helped some patients. Sharon Laird

Sharon, thanks for your info and feedback. Regarding the Botox injections, the doctor who first diagnosed my condition was not in favor of Botox as it is a poison. What does an ultrasound Botox injections in certain abdominal muscles do to help patients? My Camptocormia seems to have come from the atrophy of my paraspinal muscles from my neck to tailbone. Again, thanks

Yes, Botox is a poison of sorts, however, when administered by a doctor for medical reasons, it can help patients with dystonia. In the case of Camptocormia which is axial dystonia, the Botox must be injected via focused ultrasound into specific abdominal muscles by a highly trained professional -- injections in the lower back trunk won't do any good. Camptocormia can be caused by Parkinson's Disease, Pseudoparkinsonism, and possibly other medical conditions of which I'm unaware, however, it's my understanding that whatever the cause may be, Dopamine, a brain neurotransmitter and possibly others, are affected which causes the axial dystonia and postural problem. Not all patients are helped by focused ultrasound Botox so you would need to discuss this with a doctor familiar with Camptocormia preferably at Mayo. I would advise you to research Camptocormia and treatment options on the net and to ask your MD to refer you to Mayo in Rochester for an evaluation and possible treatment.

Hi @laurie386

I see that you recently joined Mayo Connect, welcome! The answer to your question is that I do not know of a direct contact at Mayo Clinic. You would need to contact the appointment department. Here is link with appointment information, http://mayocl.in/1mtmR63.

In the Spine Health support group on Mayo Connect, we have several members who have posted about this health issue. Here is a link to those discussions,
--Camptocormia Discussions
https://connect.mayoclinic.org/group/spine-health/?search=Camptocormia#discussion-
I would be interested in knowing how you are doing. Will you post again with updates?

Thanks for getting back to me, Teresa. I have been fortunate to get on the workout band wagon, and I am pretty sure I have kept things, i.e., muscles, from getting weaker. With only my para-spinal muscles affected, I have been working out in group exercise (because I am not very self-motivated) to build up the secondary muscles in my back and legs and arms and torso. My question is that I'm just wondering if I am missing something that could be a cause of my condition and that could be addressed. Back in 2002, I told my neurologist that I wanted a second opinion after the diagnosis I received from my neuromuscular physician in Denver, CO. He recommended either the Mayo Clinic (closest is in Scottsdale, AZ) or the University of Utah in Salt Lake City. I tried to get an appt in Scottsdale, but was turned away for what I thought was an unclear reason---they already had their quota of Medicare patients. I got into the University of Utah and was told the first diagnosis was correct. The only difference was that I got the name Bent Spine Syndrome. Naming an affliction actually is comforting. Anyway, this is where I am now.

I really appreciate your post, @laurie386. It shows how important it is to advocate for yourself and keep looking for answers. I understand what you mean about, "Naming an affliction actually is comforting." I have similar feelings. Even if there is not a cure for a health issue, having a label helps you to understand what is going on and how you can best cope with the problem.

You said that you are involved in group exercise. I'm wondering if there is a specific type of physical therapy that has been suggested?

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.