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

One thing I would like to point out to those searching for a diagnosis for their bent over posture. When viewing the MRI/X-RAY from a back view, while facing forward, the rear view of the vertebrae should show two black dots at the point where the vertebrae merges with and forms the spine. The black dots are muscles, two per vertebrae. With Camptocormia these small muscles atrophy and are individually replaced with white dots, which is fat/adipose tissue. The cause of this unknown, even among those who study and are familiar with Camptocormia. No known pharmacological response. Best assistance is through walks, throughout the day, which prevents atrophy of other major muscle groups, and gets us out, thus my search for the best walker, and brace, when needed.

Thank you for that information. Very helpful.

Hi Bob @rjmcb, Thank you for sharing this post. Your description of your diagnosis of Camptocormia almost perfectly describes how I've been walking for the past 2 or 3 years. I'm in my mid 70s now but my wife has told me that I walk like an old man since I was in my 50s. Thanks to your post and a private message from my friend @artscaping I now have some information I can use at my next doctors appointment which is scheduled in the Spring but I may move up if possible. Thanks again...John

I believe I have this condition. It is apparently very rare. Please check out an article on biomed central which indicates Riboflavin as a treatment. ( I would post a link but am not allowed. Just Google bent spine syndrome and riboflavin). I am trying to find a doctor who is open to investigating this with me.

Hello @porthole, Welcome to Mayo Clinic Connect. Thank you for sharing this information. I found the link and thought I would post it for you. I think I also have this condition and was planning to discuss it with my primary care doctor at Mayo this Spring when my annual physical comes up.

Bent spine syndrome as an initial manifestation of late-onset multiple acyl-CoA dehydrogenase deficiency: a case report and literature review -- https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-015-0380-7

I also found another article on the topic at the National Organization for Rare Disorders.
Riboflavin Transporter Deficiency -- https://rarediseases.org/rare-diseases/riboflavin-transporter-deficiency/

Can you get a referral from your regular doctor to a specialist?

Hi @porthole, I noticed that you wished to post URLs to web resources with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post are not spam. Please allow me to post them for you in addition to the resources @johnbishop also found.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989190/
https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-015-0380-7
https://ods.od.nih.gov/factsheets/Riboflavin-HealthProfessional/#h5

I'm trying to find the camptocormia group. Need help.

Hi @rnj09 and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this discussion forum within the Spine Health group https://connect.mayoclinic.org/group/spine-health/

I did this so that you can meet other members like @wiserranter @sadnancy @rjmcb and @johnbishop, who are talking about lving with camptocormia. Click VIEW & REPLY to read through past posts and learn about fellow members.

@rnj09, why don't you tell us a bit more about yourself. How long have you been noticing the effects of camptocormia? Do you also have Parkinson's or dystonia or other commonly associated condition?

Thank you, Colleen. I just found this site today and while there seems to be no really encouraging news regarding camptocormia, it is good to find people like me who can understand issues that arise from having this condition. I was diagnosed with PD in 2009 and retired in 2011. I can't remember exactly when I was diagnosed with camptocormia. It took a while to find someone who knew what it was. Before diagnosis I had x-rays, but was told there were mild arthritic changes, nothing more. As my condition worsened, I was fitted for a brace. The brace provides a measure of support, but is no real advantage in walking. I use an upright walker outside for short walks which I try to do every day. My arms get tired, so emphasis on short. I'm thankful to have found this forum. If any breakthroughs occur, I hope we will be the first to hear.

Hi @rnj09, I would like to add my welcome to Connect along with @colleenyoung and other members. I haven't yet been diagnosed with camptocormia but believe I have all of the classic symptoms. I also have polymyalgia rheumatica, osteopenia and small fiber PN. I too have trouble walking very far and tend to lean forward when walking. I had always attributed this to lower back pain due to degenerative disc disease. I recently ordered some Nordic walking sticks to see if they would help me walk more upright. Like you I try to exercise some each day. I do at least 45 minutes each day on an elliptical machine I have at home but I really want to get back to walking outside when it's nice. I had planned to discuss all of this with my doctor at my annual exam but COVID-19 pushed it out until things get back to normal for scheduling appointments.

Have you tried any exercises to help with the symptoms?

I recently found a device called a sand dune stepper which is basically 2 memory foam pads for walking in place type exercise that helps with balance and leg strength and is supposed to have some benefits for people with Parkinson's Disease - here are some videos with examples/exercises - https://www.sanddunestepper.com/videos/

I also found a site with some exercises to help with posture which I have a real problem with. I don't go through them every day but I'm trying to do them more a little at a time -- https://movementdisorders.ufhealth.org/2012/03/01/physical-therapy-tips-for-posture-improvement-in-parkinsons-disease/