Share this:
WiserRanter
@wiserranter

Posts: 19
Joined: Jan 29, 2018

Camptocormia

Posted by @wiserranter, Mon, Jan 29 4:28am

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……….

REPLY

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

@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

@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

Liked by bernese53

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?

@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

@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. (

) I am also finding that I must be the only one in this whole wide world that has this, lol

@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.

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……….

@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

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

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!!! 🙂

Liked by marystefy

@wiserranter

@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. (

) I am also finding that I must be the only one in this whole wide world that has this, lol

Jump to this post

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

Please login or register to post a reply.