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

Camptocormia - met with above person and he is sending me towards Atlanta to have tests with brain activity. He believes that my brain has stopped sending signals that operate motor functions. In other words my brain is telling my hips that I am really bent backwards so it is compensating by keeping me bent forward --- maybe ???

I am currently 79 years old, white, male and about 5' 10", 170 lbs. I was a daily, rapid walker (2-3 miles in 50-55 minutes) when suddenly toward the end of the walk I needed to sit down as my back suddenly felt tired/worn out, but no pain. I was 63 at the time. Since then I've tried: Chiropractor, physical therapy, facet blocks, epidurals, lamanectomy, neurostimulator implant, acupuncture, heat, cold, rubs, think I covered about all. I have met with neurologist, neurosurgeon, internist, chiropractor, physical therapist, psychologist. I visited Mayo Clinic, Jackson, FL. I have had X-rays, MRIs, Cat scans, blood work, urinalysis. The one common "conclusion" shared by all, including Mayo, was that I had apparent arthritis, BUT NOTHING UNUSUAL FOR MY AGE. It wasn't until December of 2017, that I visited a neurologist (the third one) in Savannah, GA, and he asked for my symptoms, which I described as lower back fatigue (like carrying a lightly loaded food tray with outstretched arms). He diagnosed me within 1 1/2 minutes and said: "You have Camptocormia. I haven't read anything about it for 15 years, but that's what you have". He printed out a Google information sheet for me and I felt like I was reading a diary entry. Upon re-reviewing my MRI it is easy to see the atrophy of the small muscles at the bases of individual vertabrae. I have never been diagnosed with Parkinson's, which almost all who suffer from also have Camptocormia. I have gotten a very good walker, and with my back brace, can walk 2 miles. Without the brace, about a mile. With neither I can only walk about 100 yards and then need to sit. When I lie down or sit, everything is as normal as it had been my entire life. The brace was supplied by Hanger Clinic Prosthetics, in Bluffton, SC, but I believe they are a national firm. Sorry for the length but I do hope it helps.

Hello @rjmcb and welcome to Mayo Connect, I appreciate your post about Camptocormia, also known as "bent spine syndrome."

There was some information about this rare disorder on the NIH website, and I've copied the link for those who would like more information, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989190/. Just click the link and it will take you to the NIH website and information.

Is the brace and walker the only treatments for your Camptocormia? Do you use any Parkinson's meds? As I also have PD, I read your post with great interest. I also have what I call "back fatigue" however, my symptoms are not as bad as yours. MRI's also show a great deal of degenerative disc disease in the cervical and lumbar spine.

Do you have a strong curvature to your spine or are you able to walk upright?

I would be interested in hearing more of your story about Camptocormia, if you are comfortable doing so. For instance, has anyone else in your family had this? Has anyone in your family had PD?

I look forward to hearing from you again.

Teresa

Because I started to bend over I was diagnosed with PD, this was back in 2006, I was given the PD meds which did nothing for my posture. I moved from Chicago to Texas in 2012 and met with a new neurologist who took one look at me and told me I didn't have Parkinson's! took me off all my meds. He had no idea why I was bent over, Over the last 5 years I tried seeing different neurologists none of them had answers. By now I am walking at a 90 degree angle with a walker. Still not convinced I didn't have PD I made an appointment with a specialist who only treats people with PD . He told me I had Camptocormia which is associated with PD, he is scheduling me for a DATscan to either confirm I have PD on some other neurological disease. I have been reading the posts to see of any one has found any kind of treatment that helps as I have tried PT which has made ne stronger but has done nothing for my posture. pretty soon i will be kissing my knees!!! 🙂

No you are not alone... I would love to try this brace , Any idea where it is available???

These are pictures of the back brace I use and would strongly recommend giving it a try if you are experiencing Bent Back Syndrome/Camptocormia. Do a Google search for Hanger orthotics near you. They advertise that they have hundreds of clinics across America.

@rjmcb
Was your back brace custom made for you? I did a google search and came up with this picture which looks a little different, http://www.hangerclinic.com/bracing-support/spinal/Pages/Spinal-Orthoses.aspx

@rjmcb wow finally finding someone that has the same condition is almost as exciting as finding a brace. Just wondering if that brace gives full support when you let go of your walker. Speaking of walkers, I found one called " The Upwalker " that has high elbow pads to lean on and has helped tremendously and keeps me straight up. The Hanger clinic is here in town so might give the brace a try. The brace looks like it would still let me bend at the waist though. Went to a place that I thought would be good in finding a brace but they didn't seem interested in going all the way in finding one that would work. They found one but I looked like a star wars little man and if you touched me I would have fallen over. Would you be interested in receiving a phone call so we could talk ?

If anyone would like to talk about this condition please send me a personal message and I will respond to you, thanks

The brace that he is talking about is called the Hyperextension Brace looking into it now and will let everyone know what my Doctor thinks about it as he wants to look into what the brace will do for me that other braces have failed, stay tuned and again please send me a private message if you would like to talk about our condition, thanks