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……….

@rjmcb

This “lower back fatigue”, as I referred to it was the best description I could come up with, came on rather suddenly while out on a daily walk of about 3 miles. We were a group of employees who walked during lunch. Nearing the end of the walk I suddenly felt the need to sit on a big rock to “recover”. I was 62 at the time. This was the beginning of a 15 year journey that wound through numerous medical specialists and tests: epidurals, facet blocks, neurostimulator implant(4 years, then removed), laminectomy, chiropractors, acupuncturist, neurosurgeon, neurologists, Mayo Clinic-Jacksonville, FL, X-ray, MRI, CScans, numerous blood tests. The one common opinion shared by just about all was: “You have signs of arthritis in your back but not more than someone your age should have”. I was at the point where I felt like I had tried every avenue and just accepted it. My 4 year older sister had been walking bent over for at least 4 years before me. She never seriously investigated the symptoms and refused to go in public with a walker, choosing to move from handhold to handhold. Now when she is in the kitchen the breakfast bar prevents seeking her. Point is: don’t let pride interfere in your lifestyle. I was finally referred to a neurologist in Savannah, GA Dr. Victor Rosenfeld (912)691-4100, 1326 Eisenhower Drive, Savannah, Georgia 31406, and on August 3, 2017 I had an appointment, meeting first with the nurse who performed a few neurological tests and asked for my symptoms. I have found the best analogy is to say that it is like carrying a food tray with arms fully extended and a light weight and walking. After a number of yards you feel fatigue (not real pain) in your lower back causing you to feel the need to sit down and rest before continuing. After her exam, Dr. Rosenfeld came in and also asked for my symptoms. Again I described it as before. He said that I had Camptocormia. This took all of 1 1/2 minutes, and 15 previous years of failures. He printed out a computer search for Camptocormia and it fully describes my conditions. He said that I would find that 99% of doctors, nurses and clinics would have never heard of it. So true. I have been checked for Parkinson’s and I don’t have that, thank God, nor does my sister. There are some indications that it can be inherited in some (I think my father showed some symptoms, much less than my sister and me). Please explore the back brace with Hangar. I have a great walker called The Drive, available through Walmart and Amazon and they make a model that has raised handles that are designed for walking with your forearms resting in arm brackets. Look it up on Google. Keep on looking, there’s too much life left, and things for us to do.
Bob

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Thank you for sharing your story. I'll be seeing my movement disorder doc on Tuesday. I don't have back issues. The muscle spasms occur in the front. I wonder if there are subgroups of Camptocormia? Or maybe it's like PD – every pt experiences it differently.

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@sadnancy

Thank you for sharing your story. I'll be seeing my movement disorder doc on Tuesday. I don't have back issues. The muscle spasms occur in the front. I wonder if there are subgroups of Camptocormia? Or maybe it's like PD – every pt experiences it differently.

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One thing I would like to point out to those searching for a diagnosis for their bent over posture. When viewing the MRI/X-RAY from a back view, while facing forward, the rear view of the vertebrae should show two black dots at the point where the vertebrae merges with and forms the spine. The black dots are muscles, two per vertebrae. With Camptocormia these small muscles atrophy and are individually replaced with white dots, which is fat/adipose tissue. The cause of this unknown, even among those who study and are familiar with Camptocormia. No known pharmacological response. Best assistance is through walks, throughout the day, which prevents atrophy of other major muscle groups, and gets us out, thus my search for the best walker, and brace, when needed.

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@rjmcb

One thing I would like to point out to those searching for a diagnosis for their bent over posture. When viewing the MRI/X-RAY from a back view, while facing forward, the rear view of the vertebrae should show two black dots at the point where the vertebrae merges with and forms the spine. The black dots are muscles, two per vertebrae. With Camptocormia these small muscles atrophy and are individually replaced with white dots, which is fat/adipose tissue. The cause of this unknown, even among those who study and are familiar with Camptocormia. No known pharmacological response. Best assistance is through walks, throughout the day, which prevents atrophy of other major muscle groups, and gets us out, thus my search for the best walker, and brace, when needed.

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Thank you for that information. Very helpful.

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@rjmcb

This “lower back fatigue”, as I referred to it was the best description I could come up with, came on rather suddenly while out on a daily walk of about 3 miles. We were a group of employees who walked during lunch. Nearing the end of the walk I suddenly felt the need to sit on a big rock to “recover”. I was 62 at the time. This was the beginning of a 15 year journey that wound through numerous medical specialists and tests: epidurals, facet blocks, neurostimulator implant(4 years, then removed), laminectomy, chiropractors, acupuncturist, neurosurgeon, neurologists, Mayo Clinic-Jacksonville, FL, X-ray, MRI, CScans, numerous blood tests. The one common opinion shared by just about all was: “You have signs of arthritis in your back but not more than someone your age should have”. I was at the point where I felt like I had tried every avenue and just accepted it. My 4 year older sister had been walking bent over for at least 4 years before me. She never seriously investigated the symptoms and refused to go in public with a walker, choosing to move from handhold to handhold. Now when she is in the kitchen the breakfast bar prevents seeking her. Point is: don’t let pride interfere in your lifestyle. I was finally referred to a neurologist in Savannah, GA Dr. Victor Rosenfeld (912)691-4100, 1326 Eisenhower Drive, Savannah, Georgia 31406, and on August 3, 2017 I had an appointment, meeting first with the nurse who performed a few neurological tests and asked for my symptoms. I have found the best analogy is to say that it is like carrying a food tray with arms fully extended and a light weight and walking. After a number of yards you feel fatigue (not real pain) in your lower back causing you to feel the need to sit down and rest before continuing. After her exam, Dr. Rosenfeld came in and also asked for my symptoms. Again I described it as before. He said that I had Camptocormia. This took all of 1 1/2 minutes, and 15 previous years of failures. He printed out a computer search for Camptocormia and it fully describes my conditions. He said that I would find that 99% of doctors, nurses and clinics would have never heard of it. So true. I have been checked for Parkinson’s and I don’t have that, thank God, nor does my sister. There are some indications that it can be inherited in some (I think my father showed some symptoms, much less than my sister and me). Please explore the back brace with Hangar. I have a great walker called The Drive, available through Walmart and Amazon and they make a model that has raised handles that are designed for walking with your forearms resting in arm brackets. Look it up on Google. Keep on looking, there’s too much life left, and things for us to do.
Bob

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Hi Bob @rjmcb, Thank you for sharing this post. Your description of your diagnosis of Camptocormia almost perfectly describes how I've been walking for the past 2 or 3 years. I'm in my mid 70s now but my wife has told me that I walk like an old man since I was in my 50s. Thanks to your post and a private message from my friend @artscaping I now have some information I can use at my next doctors appointment which is scheduled in the Spring but I may move up if possible. Thanks again…John

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I believe I have this condition. It is apparently very rare. Please check out an article on biomed central which indicates Riboflavin as a treatment. ( I would post a link but am not allowed. Just Google bent spine syndrome and riboflavin). I am trying to find a doctor who is open to investigating this with me.

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@porthole

I believe I have this condition. It is apparently very rare. Please check out an article on biomed central which indicates Riboflavin as a treatment. ( I would post a link but am not allowed. Just Google bent spine syndrome and riboflavin). I am trying to find a doctor who is open to investigating this with me.

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Hello @porthole, Welcome to Mayo Clinic Connect. Thank you for sharing this information. I found the link and thought I would post it for you. I think I also have this condition and was planning to discuss it with my primary care doctor at Mayo this Spring when my annual physical comes up.

Bent spine syndrome as an initial manifestation of late-onset multiple acyl-CoA dehydrogenase deficiency: a case report and literature review — https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-015-0380-7

I also found another article on the topic at the National Organization for Rare Disorders.
Riboflavin Transporter Deficiency — https://rarediseases.org/rare-diseases/riboflavin-transporter-deficiency/

Can you get a referral from your regular doctor to a specialist?

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@porthole

I believe I have this condition. It is apparently very rare. Please check out an article on biomed central which indicates Riboflavin as a treatment. ( I would post a link but am not allowed. Just Google bent spine syndrome and riboflavin). I am trying to find a doctor who is open to investigating this with me.

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Hi @porthole, I noticed that you wished to post URLs to web resources with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post are not spam. Please allow me to post them for you in addition to the resources @johnbishop also found.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989190/
https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-015-0380-7
https://ods.od.nih.gov/factsheets/Riboflavin-HealthProfessional/#h5

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I'm trying to find the camptocormia group. Need help.

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@rnj09

I'm trying to find the camptocormia group. Need help.

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Hi @rnj09 and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this discussion forum within the Spine Health group https://connect.mayoclinic.org/group/spine-health/

I did this so that you can meet other members like @wiserranter @sadnancy @rjmcb and @johnbishop, who are talking about lving with camptocormia. Click VIEW & REPLY to read through past posts and learn about fellow members.

@rnj09, why don't you tell us a bit more about yourself. How long have you been noticing the effects of camptocormia? Do you also have Parkinson's or dystonia or other commonly associated condition?

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Thank you, Colleen. I just found this site today and while there seems to be no really encouraging news regarding camptocormia, it is good to find people like me who can understand issues that arise from having this condition. I was diagnosed with PD in 2009 and retired in 2011. I can't remember exactly when I was diagnosed with camptocormia. It took a while to find someone who knew what it was. Before diagnosis I had x-rays, but was told there were mild arthritic changes, nothing more. As my condition worsened, I was fitted for a brace. The brace provides a measure of support, but is no real advantage in walking. I use an upright walker outside for short walks which I try to do every day. My arms get tired, so emphasis on short. I'm thankful to have found this forum. If any breakthroughs occur, I hope we will be the first to hear.

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@rnj09

Thank you, Colleen. I just found this site today and while there seems to be no really encouraging news regarding camptocormia, it is good to find people like me who can understand issues that arise from having this condition. I was diagnosed with PD in 2009 and retired in 2011. I can't remember exactly when I was diagnosed with camptocormia. It took a while to find someone who knew what it was. Before diagnosis I had x-rays, but was told there were mild arthritic changes, nothing more. As my condition worsened, I was fitted for a brace. The brace provides a measure of support, but is no real advantage in walking. I use an upright walker outside for short walks which I try to do every day. My arms get tired, so emphasis on short. I'm thankful to have found this forum. If any breakthroughs occur, I hope we will be the first to hear.

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Hi @rnj09, I would like to add my welcome to Connect along with @colleenyoung and other members. I haven't yet been diagnosed with camptocormia but believe I have all of the classic symptoms. I also have polymyalgia rheumatica, osteopenia and small fiber PN. I too have trouble walking very far and tend to lean forward when walking. I had always attributed this to lower back pain due to degenerative disc disease. I recently ordered some Nordic walking sticks to see if they would help me walk more upright. Like you I try to exercise some each day. I do at least 45 minutes each day on an elliptical machine I have at home but I really want to get back to walking outside when it's nice. I had planned to discuss all of this with my doctor at my annual exam but COVID-19 pushed it out until things get back to normal for scheduling appointments.

Have you tried any exercises to help with the symptoms?

I recently found a device called a sand dune stepper which is basically 2 memory foam pads for walking in place type exercise that helps with balance and leg strength and is supposed to have some benefits for people with Parkinson's Disease – here are some videos with examples/exercises – https://www.sanddunestepper.com/videos/

I also found a site with some exercises to help with posture which I have a real problem with. I don't go through them every day but I'm trying to do them more a little at a time — https://movementdisorders.ufhealth.org/2012/03/01/physical-therapy-tips-for-posture-improvement-in-parkinsons-disease/

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John,

Thank you for taking the time to welcome me and share your experiences. Exercise does not change my symptoms so much but it surely strengthens what muscles I have. It is my understanding that exercise is essential for slowing PD down. I have never been one to exercise much, so this is a constant struggle for me, even though I know it helps. My feet have some issues that tend to discourage as well. As a result of surgery a long time ago on an extremely painful arthritic toe, I have a hammer toe on that foot. On my "good" foot, I had the tendons cut on four of my toes so that they lay flat and allow me to walk without too much pain.

Early on I started using the Nordic walking sticks. I really like them. Now I use just one of them on my "good" side for walking without my walker. Parkinson's has stolen the "swing" needed for balanced walking so I kind of gave up using the pole on that side. Every once in a while I get it out to practice. As with all other exercise, I need to do it more often. We have a stationary bike that I use sometimes.

I will check out the sand dune stepper and the exercise site you mentioned. Variety helps!! As always, I am in awe of folks like you that suffer from more than I have ever known, yet still stay positive and press on.

Thanks again for your help.

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@rnj09

John,

Thank you for taking the time to welcome me and share your experiences. Exercise does not change my symptoms so much but it surely strengthens what muscles I have. It is my understanding that exercise is essential for slowing PD down. I have never been one to exercise much, so this is a constant struggle for me, even though I know it helps. My feet have some issues that tend to discourage as well. As a result of surgery a long time ago on an extremely painful arthritic toe, I have a hammer toe on that foot. On my "good" foot, I had the tendons cut on four of my toes so that they lay flat and allow me to walk without too much pain.

Early on I started using the Nordic walking sticks. I really like them. Now I use just one of them on my "good" side for walking without my walker. Parkinson's has stolen the "swing" needed for balanced walking so I kind of gave up using the pole on that side. Every once in a while I get it out to practice. As with all other exercise, I need to do it more often. We have a stationary bike that I use sometimes.

I will check out the sand dune stepper and the exercise site you mentioned. Variety helps!! As always, I am in awe of folks like you that suffer from more than I have ever known, yet still stay positive and press on.

Thanks again for your help.

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Hello @rnj09,

I would also like to welcome you to Connect. I would also like to invite you to our Parkinson's discussion group. Here is the link, https://connect.mayoclinic.org/group/parkinsons-disease/. As you look at all of the conversations there you will probably find one about exercise.

I have also been diagnosed with a mild form of PD and I find exercise to be the best medicine! It does strengthen muscles, improves gait and balance. Have you ever tried seated exercises for PD? They can be quite helpful when the weather is bad and there is a fall risk from wet or icy walkways. Here is a link to a Youtube video that demonstrates seated exercises for PD.

https://www.youtube.com/watch?v=KNWqyKluZgg&t=102s

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@rnj09

Thank you, Colleen. I just found this site today and while there seems to be no really encouraging news regarding camptocormia, it is good to find people like me who can understand issues that arise from having this condition. I was diagnosed with PD in 2009 and retired in 2011. I can't remember exactly when I was diagnosed with camptocormia. It took a while to find someone who knew what it was. Before diagnosis I had x-rays, but was told there were mild arthritic changes, nothing more. As my condition worsened, I was fitted for a brace. The brace provides a measure of support, but is no real advantage in walking. I use an upright walker outside for short walks which I try to do every day. My arms get tired, so emphasis on short. I'm thankful to have found this forum. If any breakthroughs occur, I hope we will be the first to hear.

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What is canptocomia? I am so sad you suffer so and hope you get better. Have you had you back seen by a pain doctor or Surgeon at Mayo. You may need surgery, but I'm not a doctor. Good for you going out for short walks. Bless You.

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