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Camptocormia (bent spine syndrome or BSS): Looking for others
Spine Health | Last Active: 1 day ago | Replies (146)Comment receiving replies
Hi, Teresa. I am barging in on your response to wiserranter regarding the Mayo Clinic. As of Feb 2022, I was officially diagnosed with Camptocormia/Bent Spine Syndrome. My next to last doctor (neuro muscular physician) said the only cause she could see for it was genetics as there are some outlier markers in the DNA test she took. You told wiserranter that the Clinic might have treatments for Camptocormia...or were you referring to the CP that wise has, also. Would you happen to know who would be a direct contact at Mayo that I might be able to talk with regarding my particular case of Bent Spine Syndrome? Thank you for your volunteer work and thank you for any info. laurie386
Replies to "Hi, Teresa. I am barging in on your response to wiserranter regarding the Mayo Clinic. As..."
Hi @laurie386
I see that you recently joined Mayo Connect, welcome! The answer to your question is that I do not know of a direct contact at Mayo Clinic. You would need to contact the appointment department. Here is link with appointment information, http://mayocl.in/1mtmR63.
In the Spine Health support group on Mayo Connect, we have several members who have posted about this health issue. Here is a link to those discussions,
--Camptocormia Discussions
https://connect.mayoclinic.org/group/spine-health/?search=Camptocormia#discussion-
I would be interested in knowing how you are doing. Will you post again with updates?
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My adult son has camptocormia resulting from pseudo Parkinsonism that he developed as a result of long-term treatment with Neuroleptic drugs prescribed for schizophrenia. Check with Mayo, however, I believe that focused ultrasound Botox injections in specific abdominal muscles has helped some patients. Sharon Laird