1. < Spine Health

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

Posted by WiserRanter @wiserranter, Jan 29, 2018

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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mschock | @mschock | Jan 29, 2018

This is just a thought. Have you ever had a good physical therapy evaluation. PT's have a wealth of info and ideas to assist. The issue is to find a excellent practitioner who wil patiently work with you. Good luck

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4 replies
WiserRanter | @wiserranter | Jan 29, 2018
In reply to @mschock "This is just a thought. Have you ever had a good physical therapy evaluation. PT's have..." + (show)
@mschock

This is just a thought. Have you ever had a good physical therapy evaluation. PT's have a wealth of info and ideas to assist. The issue is to find a excellent practitioner who wil patiently work with you. Good luck

Jump to this post

Thanks for your thought. I have tried physical therapy both sports and regular and both did no help. The sports one worked with my hip flexors but after months of pain it was doing nothing to help, After the botox I am planning on returning to see if the combination will result in any helpfull solutions. Meanwhile I am seeking help from some sort of brace that will keep me from going any lower. My family doctor is doing sports medicine so he is trying to help but just not quick enough. As I am sure that with everyone to get an appointment you have to wait for up to a year just to get your foot in the door. Aggravating to say the least to have your life slip by you waiting to get help, three years and waiting still to find the right help and life goes on.......... Thank for your input, greatly appreciated

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 30, 2018
In reply to @mschock "This is just a thought. Have you ever had a good physical therapy evaluation. PT's have..." + (show)
@mschock

This is just a thought. Have you ever had a good physical therapy evaluation. PT's have a wealth of info and ideas to assist. The issue is to find a excellent practitioner who wil patiently work with you. Good luck

Jump to this post

@wiserranter

Are you near a Mayo facility (they have 3 locations in Minnesota, Florida and Arizona)? This might be a good place to treat these disorders.

Teresa

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jan 30, 2018

Hello @wiserranter,

If you don't mind me asking and if you don't mind sharing, could you talk a bit more about camptocormia? I had not heard of this disease before. I did some of my own research and it seems to somewhat similar to scoliosis, but would you mind sharing how it differs?

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1 reply
WiserRanter | @wiserranter | Jan 30, 2018
In reply to @mschock "This is just a thought. Have you ever had a good physical therapy evaluation. PT's have..." + (show)
@mschock

This is just a thought. Have you ever had a good physical therapy evaluation. PT's have a wealth of info and ideas to assist. The issue is to find a excellent practitioner who wil patiently work with you. Good luck

Jump to this post

@hopeful33250 the place close to me would be Florida but still a very long trip, thanks for the info and concern though

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WiserRanter | @wiserranter | Jan 30, 2018
In reply to @JustinMcClanahan "Hello @wiserranter, If you don't mind me asking and if you don't mind sharing, could you..." + (show)
@JustinMcClanahan

Hello @wiserranter,

If you don't mind me asking and if you don't mind sharing, could you talk a bit more about camptocormia? I had not heard of this disease before. I did some of my own research and it seems to somewhat similar to scoliosis, but would you mind sharing how it differs?

Jump to this post

@JustinMcClanahan, will share all that I can or that I know about. Might be similar but different. Think mine is more muscle than bone but at this point I am open to finding out about everything. It started back in 2005 I began using a cane and then later on it ( bending forward ) became more intense and had to go to a walker to keep up with everyone. So that became a crutch also and probably let my muscles get weaker. They (doctors) say my hip flexors are weaker in the back or stronger in the front so therefore I am walking bent over as a result. With my CP it adds more of a problem to the walking. I have never had a problem walking or running as I have played football, basketball and soccer and coached and played with my players. Little awkward to most people but participated. I have tried regular physical therapy and sports therapy but did not have any results. Tried back braces but they did not support my hips and back together so I still was bent over. Found a brace system that might work but it's not available. ( https://www.youtube.com/watch?v=JxhXZb6xJi0&feature=em-comments ) I am also finding that I must be the only one in this whole wide world that has this, lol

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2 replies
paulajahlers | @paulajahlers | Jan 30, 2018
In reply to @mschock "This is just a thought. Have you ever had a good physical therapy evaluation. PT's have..." + (show)
@mschock

This is just a thought. Have you ever had a good physical therapy evaluation. PT's have a wealth of info and ideas to assist. The issue is to find a excellent practitioner who wil patiently work with you. Good luck

Jump to this post

Hi Theresa , we no longer live near Mayo but I’m very familiar with Rochester ‘s . You are at the best place in the world and yes people come from all over to be treated tjrtr I have 4 nieces and a in law that are rn outthrtr.

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WiserRanter | @wiserranter | Feb 9, 2018

Second day after receiving botox treatment and having a positive attitude that it is going to work this time, will see improvements around the 14th of February. Stay tuned..........

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 9, 2018
In reply to @wiserranter "Second day after receiving botox treatment and having a positive attitude that it is going to..." + (show)
@wiserranter

Second day after receiving botox treatment and having a positive attitude that it is going to work this time, will see improvements around the 14th of February. Stay tuned..........

Jump to this post

@wiserranter

Thanks for your update. I'm wishing you well!

I hope to hear from you with an update around the 14th. I'm hoping for good news!

Teresa

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WiserRanter | @wiserranter | Mar 12, 2018

Update to receiving 300 cc of Botox - didn't work........have an appt with a spine clinic and talking with a chiropractor that has a degree in Clinical Neuroscience

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