WiserRanter
@wiserranter
@wiserranter
Posts: 28
Joined: Jan 29, 2018
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……….
Teresa, Volunteer Mentor
@hopeful33250
@hopeful33250
Posts: 10753
Joined: Mar 28, 2016
@hopeful33250 I like those exercises and using the breath . Even though our group here doesn't have P.D. I think they are great and maybe some people who do have PD will join us when we get started back . I didn't time this how long is it ? We go for 45 minutes but if its not that long I can use another one also . Thanks for sharing .
Hi @lioness,
Thanks for pointing out that most members on this site do not have PD, however, I mentioned the PD exercises to this new member with camptocormia because she indicated that she was first diagnosed with PD. Often PD and camptocormia go together. Here is an article from the NIH website that discusses PD and camptocormia,
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6174367/
Liked by John, Volunteer Mentor, lioness
lioness
@lioness
@lioness
Posts: 7626
Joined: Jan 09, 2018
@hopeful33250 I liked the site and exercises glad it is helping you exercise is good for anyone but particular for people with problems like you have or with back problems anyone has . I wonder if she has a DVD I could get ? Will look into it . I will check out the nih. website .
Liked by Teresa, Volunteer Mentor
lilypaws
@lilypaws
@lilypaws
Posts: 466
Joined: Apr 17, 2020
Camptocormia is otherwise known as Bent back syndrome. It is a forward flexion of the spine such that one tends to be looking down at the floor instead of facing forward. Thank you for your good wishes. Surgery is not an option. But I will be working on getting a better exercise routine to help keep me strong.
@lilypaws. I am so sorry. It sounds like you are handling it well. When did this come on? I will always think about you rnj09. Good job exercising. I can't because I'm in pain and going to have a fusion on my low b ack. Take care.
@lilypaws. I am so sorry. It sounds like you are handling it well. When did this come on? I will always think about you rnj09. Good job exercising. I can't because I'm in pain and going to have a fusion on my low b ack. Take care.
I'm sorry to hear you are in so much pain, lilypaws. Hopefully the surgery will help lessen it significantly. I really can't remember just exactly when the onset of camptocormia was, but it has been several years. It's just nice to find people who know what I'm talking about and experiencing.
lilypaws
@lilypaws
@lilypaws
Posts: 466
Joined: Apr 17, 2020
I'm sorry to hear you are in so much pain, lilypaws. Hopefully the surgery will help lessen it significantly. I really can't remember just exactly when the onset of camptocormia was, but it has been several years. It's just nice to find people who know what I'm talking about and experiencing.
@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.
sadnancy
@sadnancy
@sadnancy
Posts: 44
Joined: Oct 11, 2019
Hi @lioness,
Thanks for pointing out that most members on this site do not have PD, however, I mentioned the PD exercises to this new member with camptocormia because she indicated that she was first diagnosed with PD. Often PD and camptocormia go together. Here is an article from the NIH website that discusses PD and camptocormia,
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6174367/
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.
Liked by Teresa, Volunteer Mentor
Jennifer Hunter
@jenniferhunter
@jenniferhunter
Posts: 1135
Joined: Aug 15, 2018
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.
@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
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 10778
Joined: Jul 23, 2014
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!!!!!!!!
Hi @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?
Hi @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?
Yes 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,
@rnj09
Thanks Teresa. I will check it out.
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor