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How to help a contact who is threatening to end her life facing the option of C1-C2 fusion

KatiepieKKatiepie Posts: 2
edited 04/14/2015 - 9:41 PM in Back Surgery and Neck Surgery
Hey everyone.

I myself am a broken neck survivor - Unstable Hangmans fracture of the C2 which was treated with halo traction (and 4 years of rehab lol). Lucky enough to never had faced fusion myself and healed naturally. Live in chronic pain yadda yadda, but doing very well and manage it well also.

I am currently trying to support a women who found my blog website that I wrote during the first 2 years of my rehab. She is in Finland, I am in New Zealand.

She broke her C5 and C6 and was treated with just a cervical collar for 3 months. 6 months on she has now had further scans and the doctors have told her she needs fusion of the C1 and C2 as they are pressing on her spinal chord.

Yup - hearing that last part scared the hell out of me.

Question is, can anyone share a success story of this kind of fusion that I can share with her? She is threatening to end her life now as she doesn't want the surgery - says she will never be able to move her head again or ride horses. Pretty sure there have been people out there who HAVE gotten back to some of the things they love (like riding horses) after fusion. I know the docs always tell us we will never be able to do things again. But hey, if I had listened to that I would never have climbed back on my motorbike again or taken up long distance road cycling.

Needing some advice as she doesn't seem to have much of a support network in the broken neck world - and I know I can help her pull through from afar. We have all been there, wanted to end my pain too. But she can't see past it like we can't at the time. I know this is a terrifying surgery, know you read so much online of people wishing they hadn't had it. But how about some of the positive stories huh?

Thanks heaps everyone - Katie-Jane Bowen, New Zealand


  • LizLiz Posts: 7,832
    edited 04/14/2015 - 9:42 PM
    Help hotlines http://www.suicide.org/hotlines/international/finland-suicide-hotlines.html

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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • I have a C1-C2 fusion due to a broken C2. While I do live with chronic pain everyday my surgery was technically a success. I have not followed the normal course of treatment and while there is always risk that you may need surgery later on it is still worth the risk. I got my fusion 2 years ago. If she can find a surgeon who she trusts. I actually do ride horses. Now I've had 3 fusions (again I did NOT follow normal treatment course) but my surgeon let me start riding again at 3-6 months and I love it! I would say I'm thankful to have had that surgery. If she signs up here she can always PM me or you can if she tells you her specific concerns :).
  • Has she explored the approach of artificial disc replacement? The surgery is highly successful and allows people to maintain good motion in their neck. She would need to shop around for a surgeon comfortable with this procedure, but t was wel worth it to me!
    L4/5/S1 scar tissue removal surgery, plus unexpected L4/5 microdiscectomy #2 October 2015
    L4/5 microdiscectomy May 2015
    2-level ADR C4-6 (Mobi-C) February 2015
  • Thank you to both of you for your reply. Sorry, I'm not up to speed on this forum yet. Having broken my neck myself with my C2 I know how life can be after an accident, and have also learned how to live in chronic pain which I now manage very well - and it's made me push myself harder and further than ever before.

    I am very thankful that she has allowed me to write to her and share my thoughts on what she is going through. And she has slowly been replying which means she is still currently safe.

    Her main concern however seems to be not trusting her doctors of the surgeons. She says it was their mis-diagnosis and treatment of her initially that has lead to this outcome of further damage and now facing fusion. She is in Finland and says that she already is with the best hospital and specialists in her country but refuses to trust them due to their error. It sure is a hard one as her insurance only covers her for treatment within Finland.

    From what I can tell, her fear is of not having any mobility in her neck after fusion, being able to look after her two large dogs on her own, and of course not being able to ride a horse again which is her passion. As I see it, she currently can not do that now even without surgery but she is struggling to accept that life it a little different now.

    I've been working hard to share my story with her, and the things I have achieved with pain along the way. But I feel like I don't have much of a right to give her advice or share a story with her as I never had to face surgery.

    The information from both of you is very helpful - I'll try and get some more facts out of her gently and come back with more information.

    Thanks heaps - Katie-Jane, NZ
  • Praying for your friend in hopes that she gains the strength to know that her life matters to do many and riding horses is just a bonus. She needs to be honest with her doctors about her fears and why she has them. I also broke my neck in an auto accident by being rear ended. My c1 was broke so I was lucky to be alive or not paralyzed from the neck down. I had the fudion last September along with rhizotomy. if she needs a surgery buddy let me know. It's painful and a slow recovery but way better than her option. Blessings coming her way and thanks for folks like you who take the time to help others. You are truly a true blessing to all.
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