I NEED MORE INFO ON OPLL PLEASE

Posted by mum2c5quad @mum2c5quad, May 9, 2024

Last year my daughter became a C5 quadriplegic, she was just walking and collapsed and her neck vertabraes shattered into her spine from C5-T2. Her neck is now titanium rods & screws. She was diagnosed with OPLL. She has suffered in pain for 10 years with nobody discovering this until after her fall. This has been a complete nightmare for us beyond devastating for someone so young. We have no Asian relatives and we are just not understanding how this could happen to her in her 20's and now in a wheelchair for the rest of her life. I would appreciate any insight you can offer.

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I am sorry for what has occurred to your daughter, and sorry for the pain you feel for your child. I too am a Mother. Cervical Ossification of the Posterior Longitudinal Ligament, from what medicine can tell us to date, is caused by a combination of genetics, being overweight (high body mass index,) which I have/am and have no idea if your daughter is or was, but also having type two diabetes, and/or being Japanese or having Japanese ancestory in your family. Those are also things/traits for which we have little control. Even obesity is being proven more and more to be a genetic trait, and fighting one's own genetics is verrrry diffacult. I always admire how much more healthy the Japanese eat with more fish and vegetables, so that surprised me. On the flip side for instance, are those who have (general) atherosclerosis, of which I am one, where my veins and arteries become more and more calcified, which is what occurrs in OPLL; except only the longitudinal ligament becomes more and more calcified, instead of staying a more flexible tissue. Calcifications are not removable or curable or changed by our behavior modifications. Ossifications need to be replaced or have placement of extra supports such as rods and screws and things. She did nothing wrong. You did nothing wrong. Neither of you could have known. I cannot imagine the amounts of different ways this has changed her life and your life. I do have a friend who is a paraplegic, and talking to other folks in the same situation helps the brain adjust and realize it's new normal and sense of hope that can still exist, but appears as in looks different than how normal looked prior to the diagnosis and discovery. It's not easy, and God knows it's not as simple as writing these words, but it exists, and can help.

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