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Occiput to C2 fixation or C1 C2 fusion?

Hello everyone. My name is Mark and I am from the Philippines. I just joined this site and hope there are some people who share the same condition as me. Advanced apologies for my long post. Pls bear with me.

It started as a simple stiff neck pain Last August 2017. I didn't pay much attention to it and just applied patches on my neck to soothe the pain. Then by September, the pain was so much and I noticed that my head/neck was already leaning to the right. I could not eat well, I have difficulty in swallowing. It is then that I decided to see a doctor. I had my xray done and later that night, the doctor called me and told me to have my neck secured. The doctor explained to me that I was diagnosed with a broken odontoid which resulted to my C2 being dislocated. She said that my spinal cord was already being squeezed by my dislocated C2(is it the right term?) and even a minor fall could make me paralyzed or dead. I wore a soft collar from my sister that night and next morning, we went to the hospital to get admitted. I met with my doctor once again and advised that I have myself put into a halo brace which I am still wearing until now. The pain is gone and I could eat anything again. I just wish I could get out of this brace already.

Now, 7 months into my halo, my C2 has gradually got dislocated again. Doctor said that my neck was so unstable that I need to undergo surgery. The doctors suggested to have my C1 and C2 fused or have it fixated from occiput to C2. The doctor said that C1 C2 fusion may be sufficient but he doesn't guarantee that I will be completely stable afterwards. That's when he suggested the other option: to have my occiput to C2 fused. He said that it is more stable but will greatly if not completely limit my neck movement. What puzzles the doctors is what caused my odontoid to break. I did not get into any accident nor fell from anywhere. Until now, we don;t have any idea what caused it. They want to have a biopsy but they said it is quite difficult since the sample they want to get is from my C2.

Is there anyone who has the same case as mine? How did you got through with it? How is your life post-op? I said that I still need to think about it if I will proceed with the surgery as I know this will forever change my life.

Apologies for the long post as I can't find anyone who share the same case as mine. And thank you in advance for those who will reply.

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13

Comments

  • hello, totally understand the apprehension about a fusion like that, Occiput or C0 to C2 will be a bit of a life changing thing to accomplish.  My odontoid? was broken and partly fused to the base of my skull so after all was said and done I'm fused from C0 to C7 and not pain free and stable after over two years. I'm happy with the result and of course to alternative to the fusion was not good. Do lots of homework and talk a lot with your surgeon. I'm surprised that your in a halo for so long.  I have posted as piperbill most of my own journey so there may be some questions answered there. My fusion was going to be C0 to C3 or C4 but got very complicated when they got the MRI and other diagnostic information. don't know how the original injury was sustained but accumulated a mess of damage over the years. Again the end result gave me back my life and its very good.   Best to you and be blessed take care piperbill. 

  • Hi piper. Thank you for the feedback. Yes, it's been so long for me to be in this halo brace. Doctor said that this is just the only thing left holding my skull and neck in place. I have read several posts here about Cx - Cx fusion and they have equal share of good and bad experiences. I am still not completely convinced to undergo surgery though I think I am more on the "I want to proceed" side now. I will still look through all posts regarding fusion in this site since I just joined last night. Thanks again. <span>:smile:" alt=":smile:" height="20" /></span>

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  • RangerRRanger on da rangePosts: 248

    Wow yubby24, I do not blame you for your apprehension. But if you have any doubts, please get one or two more opinions from qualified highly rated orthopedic or neurosurgeons. 10 years ago I was fused from C3 thru C6, 4 years ago I underwent a posterior revision fusion from C2 down to T3 to stabilize a very unstable situation. Like you I was told before undergoing surgery that I was at high risk of paralysis from an innocent slip or fall, or even an impact from an air bag being deployed in a minor vehicle accident. I lost a little ROM but I'm still able to drive safely although I have to be extra careful moving my body more. I do think the reason I still have some ROM is that my Occiput is not fused so piperbill probably can relate better on what to expect.

    I have to honestly say that I have no regrets having any of my spine surgeries, my 4th being 11 months ago. I'm still very active although my last one was a career ender, but I'm not in a wheelchair, and I appreciate everyday as there are no guarantee's in life.

    Good luck to you yubby24, keep doing your research, be your own advocate, and what ever you decide moving forward never look back. Post-op can have it's ups and downs but you need to stabilize that spine and not continue to live in fear anymore. Keep us posted here, you have our support.

    ranger

  • Hi Ranger. I already had opinions from two other doctors. They might have different points but they all share the same thought of going under the knife to fix me. Actually, if this will push through, this will be my second fusion. My 1st one was to fix my scoliosis. My T3-T9 (I do not remember exactly the range) was fused when I was 17 years old (I am now 29). 

    I  have almost adjusted living with a halo brace. This is now my new normal life. Good thing my company allowed me to work from home - my work is software developer. Though I rarely go out of the house because I attract unwanted attention. It is also why I wanted to have this braces removed already. 

    I will keep this thread of mine posted on the progress of my situation. Thank you for all your inputs.

  • Hi, 

    54 years old. I broke my C1 in a dirt bike accident in July 2016. After 2 months in a brace it was determined that there was no healing and I needed fusion surgery. I was absolutely gutted as even though I was still in a neck brace, I felt great and thought I was on the way to healing. 

    In Sept 2016, I had C0 (occiput) to C2 fusion with hardware. Three days before fusion surgery, 2 pins put in my skull to hang 35 pounds of weight for 3 days before the surgery in an attempt to pull my sinking head back up where it belongs. Laying on my back for 3 days while my head was in traction. In fusion surgery, 7 screws and a plate in the skull, 2 long screws in C1 and C2 each. Connecting the skull to the uninjured C2, 2 rods bridging it all.  I never smoked and with my natural bone harvested from my hip during the surgery, I fused solid and strong. I have very little range of motion (ROM) both left and right and up and down, it kinda sucks. I am basically one straight bone from my skull to my C2. Therefore, all the articulation starts from the C2/C3 joint on down. When I look down, the major bending starts at the c2/c3 then c3/c4 joint and so forth. 

    I am lucky to be semi-pain free. Some days, when I try "sightseeing", looking left and right, my neck muscles get tired and tight, I call it "lead head" as my head feels like it weighs 100 pounds on my neck. Other days, I forgot I had a neck injury.  However, again I am lucky to be pretty strong and feel I can do anything, including race my dirt bike again. I would do it, but the risk of hurting myself is just too great as riding motorcycles you often hit the ground and crash.

    Winter just ended and I logged more miles on my snowmobile then I ever have before. I can say even after 8 hours in the saddle of my sled riding quite aggressive, I still feel great.  I kick the hell out of riders younger than I, even with a fused neck.

    I write this to give some of you a glimmer of hope. There is life after fusion. Does it sucks to have this happen? Oh yea, no doubt. It's hard to turn left and right, difficult to work in tight spaces,  somedays your neck hurts like hell. Is life over as you know it?.. hell no. I am so bummed I can't race motocross any more. What hurts is I am strong enough to do it, however, it is simply too risky as there is many times you crash on a dirt bike. But I can do almost anything I want. Jet ski, snowmobile and even offroad if I am careful. I work all day, some days in the office, some days in the Bobcat (now outfitted with backup cameras).  Driving is a bit more difficult, but I have hand mirrors in the drivers area to help me see.

    I would give anything to take that day back. But I am extremely lucky. I was paralyzed from the neck down for about 10 minutes after the crash. I was lucky to get my feeling back in the life-flight.  Even more fortunate to have a successful fusion surgery and now, living fairly normal including a lot of fun times on my snowmobile and jet ski. When I get down and blue, I always remember really how lucky I am.


    Good luck..

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  • I am a 70 year old female, I had a CO to C4 fusion 6 months ago, I was told to be extremely careful before the operation as well and it is a dangerous operation to have and it is scarey I will admit, but you take the chance because you want to have as normal a life as possible and I have a good life I am pain free I can walk outside now without worrying about falling over or someone knocking into me. I drive carefully with the help of good mirrors. Around the house I don’t notice how stiff my neck is it is just when I am in a shopping mall or in the street I find it a strain, but it is something I know I will get use to. I am sure you will be fine. Good luck to you and keep us informed.

  • AJGormitAAJGormit Posts: 2,087
    edited 07/23/2019 - 1:08 PM

    hi yubby24

    Welcome to Veritas Health Forum

    you are getting good support from some experienced members with similar situations and that is good to see.

    please let us know when you have your surgery date and add that to our surgery buddies groups in the appropriate month.  you will find added support in the groups during and after your surgery.

    this is a serious injury and definitely not one that would normally just appear without trauma, so hopefully they can discover why to prevent any further issues.

    it's a shame you are not able to go out of your house and have to cope with enforced isolation.  i hope this will change very soon with stabilisation and securing your injury.

    i have added two links below to help new members with information and these also contain the forum rules.  there is lots of material to research on spine-health that will give you the power of knowledge.

    welcome to spine health

    all new members should take the system tutorial 
    aj 


  • Hi In2racn. Thank you for sharing your experiences here. Your surgery was the exact recommendation of my doctor. You did help me look positively after the operation. I still don't have any definite schedule of when will I be undergoing the surgery though. The expense will be a big hit to our pockets.

    You did say that you still have minimal ROM after surgery. Doctor said that I will not be able to move it anymore that is why I was hesitant before. I am looking forward to a better result of my surgery once I push through. 

    Again I thank you very much for the positive feedback. Take care and God bless.


    Hi myrajstone. Thank you for sharing too. I want to have a normal life agan too but I guess we have to adjust to our new "normal" life. It is the driving part that I still want to get back to once I had the surgery. I love to drive and it is a childhood dream and now I fear it is now over for me.


    Hi AJGormit. Thank you for the bits of information. It is really a shame. I would rather stay at home than go out but get unwanted attention and sometimes being laughed at.


    I will be going to the doctor soon for another round of check up. I will update this after our meeting. Thank you and all of you have a safe and happy day.

  • Just to provide an update.

    I will be going to meet with my doctor on June 5th. We might as well discuss on when will we schedule the surgery. I also want to ask him if we could try for C1-C2 fusion first or he wants to go straight to C0 - C2 fusion. 

    We'll be going to ask for financial help from charities too since the expense is a big hit to our pockets and we can't shoulder it ourselves.

  • Thank you for that feedback, nutcase. 

    The reason I am having second thoughts on going for C0 - C2 fusion is due to the amount of ROM that I will be losing after that. But it is also what you said about more stability in C0 - C2 than C1 - C2 that is giving me the dilemma.

    I want to have a much more stable fusion so C0 - C2 is much better in exchange for the ROM that I will be losing. I wanted to at least be able to drive still after the surgery that is why I am still considering C1 - C2.

    But when I see the post of In2racn above, it gives me this confidence that I will still be able to enjoy life even if I went to C0 - C2.

    P.S.

    The scheduled appointment with my doctor was cancelled due to a patient of his needs to undergo surgery and will take long so he needed to cancel my appointment. Will give an update after we meet.

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