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Camptocormia (bent spine syndrome or BSS): Looking for others
I have been diagnosed with Camptocormia ( bent back syndrome ) recently and having a hard time doing what I used to do caring around a rollator and a cane. Finding information and people besides medical terms has been difficult if not impossible. Only found two people and neither one will talk about it. I have a mild case of CP but that has never really been an issue until now and it gets in the way since being diagnosed with Camptocormia. I also have venous statious in my legs and have to be careful not to even brush them up against anything. Add to that being diabetic also with a weight problem because of inactivity. I am looking for solutions to the Camptocormia as meds have not worked and trying the botox injections again coming up in a few weeks with a new Doctor. Also looking or starting to look for some kind of brace that might hold me up if the botox doesn't work or does not work fully. Found a brace support system but they have not found a producer for the manufacture of them yet so hanging in there for that to happen. Suggestions or comments welcome..........
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Hello @lotsofpain, welcome to Connect. I moved your discussion and combined it with an existing discussion in the Spine Health group that you referenced titled, "Camptocormia." I removed your other discussions of the same topic so that you could focus on meeting the members discussing camptocormia in this discussion. If you are replying by email, I suggest clicking on VIEW & REPLY and you will be brought to the new location of your post. There, you can read through some of the other posts shared by members and participate where you feel comfortable.
@lotsofpain, if you don't mind sharing with the other members, what sort of treatments and coping mechanisms have you tried so far?
I don't have a formal diagnosis of Camptocormia . I have had back pain for years and my thigh muscles and hip flexors have been very tight. The MRI's show lots of arthritis , bulging and collapsed discs. Eventually I had a couple of injections but they did not help and arguably made things worse. I am now seeing a physio - courtesy of the NHS and a physio and osteopath at my own expense. I have been given stretching exercises but also some taping to force me to stand upright and stretch out the muscles
Please see my entry of Aug 13, 2018, and my entry of my back brace on Sept 15, 2018. I have found, and most articles state that Camptocormia has shown to be non responsive to pharmacology, thus no luck with medication. I have never encountered anyone confirming relief/success with physical therapy/exercise, although exercise can certainly help prevent muscle atrophy in the other areas of our body. I personally can rule out injections, having had both epidural and facet block, multiple times, with absolutely no moderation or changes. The only help/assistance that I found and use and recommend are a quality walker like the Drive Nitro Euro Style Rollator (can find by Googling “walker”) it has larger wheels for grass, gravel and uneven surfaces. I can easily load and unload it in the back of my car. I don’t use it around the house or going to and from the car less than about 50 yards. Additionally I STRONGLY recommend at least exploring the back brace that I pictured in my September 15 entry. I only use the brace for things involving my walking about a mile or a little more (like walking our new Havanese pup). Lastly, anyone with a bent back type syndrome should DEFINITELY search Google for Camptocormia, read and make a copy to always show any medical professional you visit. I can guarantee you that fully 95-98% will have never heard or read anything about it. Hope this helps.
I cant quite find the september one can you repost i
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.
Thanks I don't live in America I am in the UK so I'll have to investigate it here
How does the brace stop me (that's not actually me in the picture) being like this
As I understand it, the best I can hope for is no or slow progression to that stage. There is no certainty of either. I feel the more we try to be in the most upright position we are capable of the more we help our “muscle memory “. My walker is primarily used to allow me to push up into an upright posture, and on long distance, without my brace I tire, and find I best stop and sit awhile. Canes do not work for me because they do not help me in pushing up. My walker kind of serves as a parallel bar. My sister, who is 4 years older than me, had this condition (never diagnosed), at least 10 years before I began with it. She refused to use a walker, because of her pride, and instead would rely on grocery carts, thus limiting her destinations.
Type in " Upright Walker " I am using that to get around in. The regular walkers don't help at all as it burns the muscles in your arms. Agree the cane does not help at all. I have tried botox, phy theropy and just about anything I am willing to admit to including chiropractic. Lost money on that. Did try the star wars suit but if you touched me I would have fallen over. Braces don't help as I bend at the waist.and not much out there that will help that and have tried many but they tie me up. Since me first post which you can read above I have gotten much worse and can tell doing my daily activities but I still am fighting by staying busy. At times I feel at a lost but hopefully someone will come on here and have a solution that will work, hopefully.
I am investigating the idea of getting some short term relief by taping on my back and abdomen to force me upright plan to chat about it to my osteoplath