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I am 11 months post OPLL surgery

graybeardgraybeard Posts: 1Member Listener
Hello,
Thanks for allowing me to join your community. I am 11 months post OPLL surgery. And i am searching for info about my condition and what challenges i face long term. Thanks

Replies

  • thespicemanthespiceman Posts: 4,299Community champion Disability Gamechanger
    Hello @graybeard   Pleased to meet you welcome.

    Thank you for joining and sharing.

    I am one of the team of community champions who help and advise new members who join.

    Please can I ask what you need? 

    Apologise do not know what OPLL is . Please if you could explain. If you do not mind.  

    If you wish have a look a round our website .

    Hope that helps.

    Wish you well for a speedy recovery.  We are here to support you.

    @thespiceman
  • Antonia_ScopeAntonia_Scope Posts: 1,783Member Pioneering
    Hi @graybeard ;

    Thank you for sharing this with us.

    I hope you're recovering from the surgery okay? We have a Rare and Undiagnosed Conditions Q&A today from 10:00am-11:30am, where you can ask some questions and get feedback from Jayne Spink, Chief Executive of Genetic Alliance UK.

    Hopefully some our members may be able to support you soon, we had a couple of members discuss OPLL.
  • Pippa_ScopePippa_Scope Posts: 5,858Member Disability Gamechanger
    Hi @graybeard, how are you doing? 
  • Sam_ScopeSam_Scope Posts: 7,348Administrator Scope community team
    @debbijane said:
    I have a condition called OPLL which means ossification of the posterior longitudinal ligament. Before I had a fall in 2012 I was unaware of it, and had a full time job, was an member of 2 amateur dramatics Societies and a Pantomime Society, and also sang in my Church Worship team. When I fell, it forced bony spurs into my spinal cord. Despite a trip in an ambulance and agonising electric shock type pain, I was sent home and told it was whiplash. I wasn't diagnosed until mid August after I had all but demanded an MRI. At that point I was immediately admitted to neurosurgery for an operation to relieve pressure on my spinal cord. Sadly, because of the delay part of my spinal cord is atrophied. Five years on, I've had to accept a different lifestyle, but it's been hard having to admit I can no longer do the things I used to. One slip changed my life completely.

    @dtnmrd said:

    I have OPLL too. About 4 yrs ago I started getting numbness - weakness and tingling in my hands and feet. For about a year I thought it was just part of my RA and I would just have to deal with it. Then I talked to the right person who started my on a year long ordeal to get the OPLL diagnosed.  I was finally diagnosed 2 yrs ago. I had a fusion of C3-C7 last June. I used to do Tai Chi Zumba and Yoga on a weekly basis. I was active in my community. I was on the planning committee for Tucson's yearly walks for Alzheimers and Downs Syndrome. I volunteered yearly for the Susan B Coleman Breast cancer walk. All that has gone away.  I still have a full time job, but this is going to have to be my last school year. The pain-numbness-stiffness-tingling-weakness is just getting too bad. I struggle to survive my work day, get home try not to move until it's time to go to bed. Using a therapeutic dose of meds to enable me work is messing with my ability to think clearly. I am making more and more mistakes. Another food reason to give up and quit working. My biggest fear is making sure that I get approved for Disability the first time I apply. I can't afford to wait 1-2 yrs for the appeals process. Have you applied yet? Any advice on getting approved the first time?
    Scope
    Senior online community officer
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