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Hello

Hi, I am new here as caretaker for my dad suffering from:

Cervical spondylosis with myelopathy/Os odontoideum (not that I even have a real understanding what that is- I just write what his condition is listed as per his neuro doc)
He is 69 years young & three opinions now suggest surgery. We are in Philadelphia, PA.

Thanks for all the invaluable helpful posts from many longtime members here. It is nice to know this forum exists and people like me get a lot of help.

I posted our situation in another thread with more detail but wanted to say hello formally after reading all the forum rules :)

Anne
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  • RickilalasRRickilalas Posts: 559
    edited 08/10/2013 - 6:48 PM
    Hi Anne
    Sorry for the reason your here but welcome to the group.
    A few thoughts for you, it's late and I can't go into detail. Read everything you can so you have a idea what your up against. Get several doctors to look at him and don't be surprised that you will many different ideas of treating your Dad.
    Look up each word you don't understand so you have some basic knowledge so you have a idea of what is going on. Don't worry it's impossible to learn it all.
    The word myelopathy caught my eye tonight because it's not a word that's good to hear. Don't worry it isn't always bad and I have no idea about the OS part. But myelopathy is spinal.cord damage which can be very mild or very dangerous. You need to find out what the cause is so the progression may be stopped before major damage is done if it isn't.

    Make damn sure they don't talk.about using off label products with him. I will explain later in a IM if you need me to.

    Good luck
    Rick
  • Thanks Rick!
    I haven't heard anything about off label products. I'd like to know.
    Yes, I am coming to realize that I won't understand a lot of this. I'm a bartender- lol. Just overhearing his current doctor and nurse practitioner talk about him- it sounded like they were speaking another language.

    What I do know is that surgery for him would require CT scanners as guidance regarding the C1 area.
    Yes, myelopathy was the first word we heard at the beginning of his journey here. He is almost 70 years old and from what I gather, it is age related? At first, we heard about some non-invasive therapies for him. But the OS odontoideum issue is what has his doctors more concerned. Apparently his C1 is separated in a way his doctors call "highly unusual".
    From what I read on his reports, the myelopathy affects all the way down to C7 but getting milder on the way down.
    He isn't in a great amount of pain (according to him- he wouldn't say if he is anyway). It's the imbalance and loss of coordination that concerns me so much. I worry one bad fall will irreversibly damage him.
    Of course, he's still hoping for alternative therapies but has accepted surgery may be his only option.
    All I can do is hope & pray. And be grateful places like this site exist because the wealth of information is amazing.

    Thanks again!

    Anne
  • Hello Anne
    This is new to me even with all the cervical issues I have resulting in spinal cord damage.
    My biggest fear for any one is spinal cord damage. The cord effects everything below the area effected at his level it's safe to say everything could be a issue.
    From what I could find in many people it's just watched until it becomes really unstable.
    Keep in mind I did not even hear about this until I read your post.
    I found a site that explains it pretty well that most people can understand but I can't vouch for them. Always get several opinions and several options then read everything you can before you make any choices. My guess from the place this is it would probally be a posterior surgery. Anyone having a posterior cervical surgery will tell you it's very painful. At his age I would consider everything and how hard it will be on him. When and if they say the cord could be damaged it's time to do something. Your starting out right asking for info. You will need it. I hope some one on the board will pop in with experience in this field. It's rare and I understand that a few people have it but don't even know so it can be mild.
    I will.send you a PM with the link in it. We don't place links on the forum.
    Good Luck
    Don't worry just think smart.

    Rick
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 105
    Hi! I posted information concerning this issue on another thread by Annesmith114. I am sharing my experience with os odontoideum and my condition.
    Here it is:
    http://www.spine-health.com/forum/treatment/back-surgery-and-neck-surgery/seeking-help-my-father

    Pat
  • Rick, thanks a million.
    Yes, the os odontoideum seems to be the issue that is most concerning and I find less info on it. Pat was kind enough to share her SUCCESS story with me and I read another thread on it but it's older. I did post on it in hopes someone will be back with an update.
    From what I have read, debate about it being congenital or from trauma. He fell off a ladder in 1986 & landed on his head. That's really all he has to offer on it.
    Another thing about my dad is that he is sober for almost 30 years. So he is hot & cold on the matter of narcotics as pain meds. He says now he will take them. I think he'd be okay as he's spent the past 30 years being an educator in the field of recovery and speaking all over the area/helping others. So he will have a great support system if he needs narcotics to get by for a time.
    Speaking of that, up until 1984, he was in quite a few car accidents (grace of God no one injured other than himself), so he could have very well injured the area back then.
    Now his last big hospital neuro doc said no way, this os odontoideum is within the past 10 years and definitely not older. His newer doc says it could be from the mid 1980s or he was born with it. No one seems to know for sure.

    So he's having a CT scan of that exact area this week to get a better look at how it has fused itself.

    And in the meantime, I'm doing exactly what you say- gather, gather, gather info! Everything is his decision and I respect whatever he decides and will support him. But I would do anything to get this kind, generous, huge hearted man some life quality. I'm so blessed to have him as a dad. I am on indefinite leave from work and this is my job now- getting my #1 man healthy! Or healthier :)
    I'll check my PM now & appreciate so much the advice!

    Anne
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