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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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@rnj09 Thank you for your reply and yes I will feel better after the surgery. They tested me and afterwards I had no pain. So that is how I will feel once I heal. Best wishes to you. It must not be easy having what you have. My thoughts are with you with a prayer.
I live in South Africa and was diagnosed with this disease 7 years ago. Nothing helps for me and we have no Mayo Clinic. I GIVE UP!!!!!!!!
Thank you for posting the nih website. The information was helpful. I have PD and "something else". In 2018 recovering from extensive back surgery, I had a pulling down sensation, pulling my chest forward and then becoming short of breath. I assumed it was from the surgery and that PT would take care of it. Two years later and it is getting worse. My PD doctor has come up with 3 different diagnostic names: abdominal dystonia, camptocormia, and diaphragmatic myoclonus. Two weeks ago he injected Botox into rectus abdominus muscles. I have had no improvements nor side effects. I think the reason I don't have back pain is because I have such a hard time breathing that I sit down quickly before the back gets involved. I have felt a pulling sensation in my lower back but the breathing difficulty trumps the back tightness. If Botox doesn't help I assume I will be confined to a wheelchair in the near future.
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1 Reaction@sadnancy All surgery creates scar tissue in the fascia and that can create a lot of body restrictions. I wanted to share this post of mine where I was talking about breathing problems and myofascial release which releases fascial restrictions. I have a lot of experience doing MFR therapy and it helps me a lot. https://connect.mayoclinic.org/discussion/mysterious-shortness-of-breath/?pg=82#comment-401008
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3 ReactionsHi @valeriestrydom, oh, I hear your frustration. Can you tell me more about the severity of your bend and your mobility? Do you use a walker? Have you ever tried a brace?
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2 ReactionsYes I use a walker when I go out which is seldom because my arms get very tired, I have used about 4 braces specifically made for me, but they either hurt me or do not keep me upright. I am very small boned but the test show that my spine is fine, My tummy muscles are extremely strong but the specialist says botox will not help, I dream of walking upright,
Good morning, I have read these posts with interest, because I have camptocormia also.
I first started showing symptoms about 11 years ago. Gradually worsening, year by year, and never with any diagnosis. I also hade some acute back problems (bulging discs, arthritis, etc) that was sort of a distraction to the doctors. They focussed on that acute pain, but I never received a good answer about why I walked bent-over, and had trouble being erect. I came to Mayo/Rochester in March, and they knew right away what it was. My particular camptocormia is caused by axial myopathy. My erector spinae muscles "have left the building". I wish I could tell you why, but even back in 2013 it was evident that they were being compromised by something.
I've attached a photo from 2013. At that time, I really needed to bend over to walk only when I was walking uphill. Now I am bent over to walk all the time.
So here we are. No cure. No effective treatment. Not a great situation.
I am still able to be quite active, and ride my bicycle and my motorcycle quite a lot. I also have Type II Dia, but that is well controlled.
I take two Aleves at night before bed, and that helps me sleep. Last week I had a hydrocodone because of the pain, and that is the last time I will do THAT.
I use a walker. Using a walker is GREAT, because it allows me to take a full, natural stride when I walk. It is weird to see the walker in the garage parked next to my bicycle and motorcycle. But this is a weird condition.
One thing I would like to know, that no doc has talked about, is this: what is the end game for this disorder? Is my axial myopathy going to get worse? And if so, in what way?
I'm glad to find a forum with folks who have what I have. This is not the future we had planned.
Stay well and happy.
Bob
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1 ReactionHello @robtrich49 and welcome to Mayo Clinic Connect. I am glad you found this community as well. Making connections with other who understand is so important.
I'd like to introduce you to members like @jenniferhunter and @wiserranter who have both been involved in this discussion previously as they may be able to share their experience with you.
Have you asked your doctor what the future may look like for you or do you feel you just haven't received a suitable answer?
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1 ReactionHi @robtrich49, I would like to add my welcome to Connect along with @amandajro and other members. Reading your post made me think of my own situation. I have gradually started walking bent over since my fifties when my wife commented while we were on vacation that I walked like an old man. I just chalked it off to my becoming an old man. I no longer take long walks and I drive the grocery cart when we are shopping because it helps me keep more upright.
@rjmcb mentions using a brace in his post earlier in this discussion here - https://connect.mayoclinic.org/comment/182484/. I haven't done much investigation and really didn't know the condition was called Camptocormia or bent spine syndrome (BSS) until a friend on Connect mentioned she thinks I might have Camptocormia. So far it's been low on my list of things to discuss with my doctor but reading your post brought it back to the top so thank you for that. Last Winter I purchased some Nordic walking poles which work better than a walker for helping you walk more upright. I haven't used them much but need to start using them and working on my posture while sitting at the computer. I want to do a little more research and talk with my doctor about a back brace to see if it will help straighten me up so that I walk more normal.
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1 ReactionI can do everything I used to do but now I have to do it sitting down or be creative in anything I do. I have the " upwalker " now so I can hold myself better when I talk to people and I have a cane which all it does is steady me but I can only do about five feet..I have tried Botox and both kinds of physical therapy which did no good.Pretty much tried everything including a star wars type back brace but you could have touched me and i would have fallen over. If anyone would like to call me and talk about the tings I have tried then send me a private message and I will gladly send you my number.
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