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

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Sorry if these have already been answered:

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(#1.)
Does anyone know of anyone

whose camptocormia is

*solely*
caused by *dysautonomia*?

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(#2.)
Does anyone know of anyone
who has camptocormia

who is able to ***straighten up***

&

if the person is able to straighten up,

does the person start ***hyperventilating***
?

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Thank you very much!
Wishing everyone tons of blessings!

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Sorry if this has already been answered:

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(A.)

Does anyone know of anyone

who has camptocormia

who is hunched over

*all day
every day*

?

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Thank you very much!
Wishing everyone tons of blessings!

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I was recently diagnosed.. with Camptocormia,, I tried a $1000 brace but it did not help, as my problem is with weakness in the muscles in the low back that hold me up (proper name escapes me) anyway the brace seems to be for bending in the mid back,, L1 and above. All I have researched seems that P.T. might help, and Deep Brain Stimulation MIGHT help with severe cases..

Hello @richardcampto, Welcome to Connect. I have not been formally diagnosed with Camptocormia but I'm pretty sure the diagnosis fits me also. My wife has told me I walk like an old man since I was in my 50s and now that I am an old man it's much worse. I walk leaning forward and it's difficult to stand up straight. I had thought about a brace but really wasn't sure it would help myself. I did have some PT a few years ago which were aimed at strengthening my lower back muscles which seemed to help some but sadly I haven't kept doing the exercises. I do need to keep doing them.

I found this article that might be something that will help and I may try to find myself an old backpack for a neighborhood walk with a few rocks 🙂
Back Extensor Strengthening Exercise and Backpack Wearing Treatment for Camptocormia in Parkinson's Disease: A Retrospective Pilot Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5608676/

I wasn't aware of the deep brain stimulation so had to look it up.
"There is no established treatment of camptocormia resulting from any etiology. Case series suggest that deep brain stimulation (DBS) of the subthalamic nucleus (STN-DBS) is effective in the acute but not the chronic stage of PD camptocormia." --- Pathophysiological Concepts and Treatment of Camptocormia: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5008234/

Is this the research you found?

Yes, that's what I found,, mostly "No established treatment etc" I have tried PT no help, just got some Walking Sticks and they seem to help with walking upright, but as soon as I put them away,, I'm back to my Bent Over stance.. I finally found a doctor who knew what Camptocormia is,, (Movement Disorder Specialist) So far, I have tried PT, Cortisone, brace (too high on my back, so no help with the lower back) Water exercise, What I don't know yet, is whether it is related to PD, Axial or some type Myopathy and the prognosis,, also, does anyone have an opinion about using Braces, Walkers, Walking Sticks really help or does it contribute to further weakness in my/our backs?

This seems to be a very old chat, but I'd appreciate knowing if any of you Camptocormians have been diagnosed with Axial Myopathy...If so, I would be helpful to commiserate with you.

Hi @axmyc, Welcome to Connect. I haven't been formally diagnosed with Camptocormia but I do exhibit the forward leaning and head partially down when walking. This also seems to fit the description of Axial Myopathy. My wife noticed it when I was in my fifties and told me I walk like an old man. Now I am an old man at 79 and definitely don't walk as good as I did at 50 🙃.

Have you been diagnosed with Camptocormia or Axial Myopathy?

Hello, John.
In my case, camptocormia is a result of Axial Myopathy. Several years ago, I struggled with erect posture. It became difficult to walk upright, while carrying the lightest things. This worsened over time. I saw several specialists, one who was sure I had Myasthenia Gravis. After three months on prednisone, with no improvement & an unpleasant response to the drug, I obtained a second opinion. The second doctor suspected it was Axial Myopathy. After the results of a second MRI were evaluated, the definitive diagnosis was Axial Myopathy. I was fitted for a custom brace, but it was so uncomfortable I couldn't use it. I've found that physical therapy & aquatic exercise has been helpful, as they strengthen the muscles that are still functioning. I walk in public with trekking poles, which encourage upright posture...but I tend not to use them at home when scurrying around. If you walk in a bent forward position it would really be helpful to you if you saw a neurologist to rule out Myasthenia Gravis or Parkinson's or any other conditions for your peace of mind. I feel as if I'm still productive despite my posture.

Thank you for suggestions @axmyc. I did do a stent with PT when I was having lower back pain and my Mayo primary care doc sent me to PT. I also have trekking poles and they do help me walk but unfortunately I don't go walking much other than pushing a shopping cart at the grocery store which does let me walk a lot. I've thought about trying a weighted back pack and using it for walking to see if it might help with the posture but I probably need to discuss with my doctor first.

Hello Everyone. First time poster here. I am glad to find you, as it is a lonely world out there when you have been diagnosed with camptocormoa.
I received that diagnosis in April 2021 at Mayo Clinic/Rochester. I had been to a load of physicians here in Spokane, none of whom could figure out what was going on with my back. Finally a back surgeon put me in touch with Mayo, and they had it figured out in just a couple of days. I have Axial Myopathy as the root cause of my camptocormia.
So finally, I had a diagnosis. But close on the heels of that diagnosis was a conversation regarding cures (there are none), and treatments (not very many, and none very effective). They suggested that I go pick out a nice walker.
So standing upright has been a problem, and is now nearly impossible. And that means two things: first, other muscles are being "recruited" to carry the load when I try to be upright, and those muscles get fatigued quickly. And it is HARD WORK to hold oneself upright with muscles that were not meant to perform that function. So if you pant a bit, and it seems to be very hard, well it IS very hard, and your body (heart, lungs) are working extra hard to make it happen. And with back muscles no good, lifting anything above my waist is also really had. And second, walking is very hard. I used to do fine with a shopping cart. In fact, it allowed me to take a normal stride, and oh boy did that feel good. But as my disease progressed, shopping carts are not quite up to the task. I have looked at braces, but they seem cumbersome and uncomfortable, so I have given them a pass until now.
On top of the campto, I seem to have some arthritis in my lower back that causes pain when I extend back - lying on my back can be pretty uncomfortable. I get relief by sitting in my recliner, with my knees drawn up. I sleep that way from time to time.
As for pain relief, I have a prescription of Tramdol, but it is not helpful. Probably the problem is that I don't take enough of it, but I am concerned about getting hooked on opiods. Right now, the pain is somewhat manageble with Tylenol and aspirin. We also use a topical foam called Theraworkx that gives a bit of pain relief and acts very quickly. It contains a magnesium sulfate, which is what epsom salts is, and you know about that.
At this point, I can ride a bike and row, but can't walk worth a flip. I have also noticed that my inner leg muscles appear to be atrophying, which may be connected to the disease, or to my being too sedentary.
I hope my comments are of some value. And I would really like to hear more from you about what works in terms of increasing flexibility, strength, and mobility.