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C1 C2 Fusion Anyone with Results? Honestly Good Results?

HaloHeidiHHaloHeidi Posts: 10
edited 11/17/2014 - 8:55 PM in Back Surgery and Neck Surgery
:) Hello Everyone!!!

So, I still have not done the C1-C3 Fusion some of the docs I've seen have suggested. Other docs have suggested I don't do it, so it's kind of an odd scenario. Some are also now saying to fuse C3 as well for various reasons.

I have an Os Odontoideum, my pain is cut in half now following having prolotherapy done on my neck. My greatest annoying symptoms are feeling like my head will roll off (it feels wobbly and literally is) and feeling dizzy/off balance/tremors. I do get nasty headaches, but I am managing through them most of the time.

My thing is if I agreed to doing the surgery, I DON'T want to spend my life seeking pain relief through pain medications, with doctors who pretend they have no clue why you have pain, and never having a clear thought in my head because I'm strung out on pain meds or in CRAZY amounts of pain.

My questions are...and to anyone responding...PLEASE tell me the full extent if you can of these questions--it would be SO much appreciated if you would :) :

1. After surgery, on a scale of 1 to 10 (with 10 being the worst pain you ever experienced) what number is your pain at on a regular basis (I'm not meaning soon after surgery but in your daily life after all is healed).

2. Are you on ANY pain medications AFTER your surgery? If so, what kinds and do they make you feel "out of it?"

3. Were you able to go back to work after this surgery...normally?

4. Do you regret having this surgery? Like are you SO miserable you don't feel like you have a life anymore...

5. If you are someone who has had GOOD results, what do you feel was beneficial? I know some had trauma that broke their neck and are happy to be alive and moving...so if that's the case that would be cool to hear too...but I'd still LOVE to hear about the reality of your outcome with the negative parts. I just want to have a clear grasp on it all.

I'm still sitting on the fence, thinking that if God made me this way, then He meant me to remain this way. I had a few good intentioned people tell me things after their C1-C2 fusion...like: "I'm FINE" or "I'm glad to be around" or "Those of us who had successful outcomes are out busy living our lives and don't come on the forums"

But again...what does that say...you survived but are relying on pain medications forever with no full relief...but you are "fine" "alive" "living your life"....I'd love to know what the REALLY means...

For someone like myself, being at the mercy of doctors for medications for pain and more surgeries and such...just doesn't sound like "living" to me :(

I don't trust doctors much you could say, because they say "just enough" to get you to commit to trusting them to do stuff to you and then YOU have to live with the consequences that they left out. I've been through a whole load of "doctor talk" who have purposefully misled me...I didn't let them all know I was a medical professional myself...the things that some doctors do and say should be a crime...no exaggeration. But of course...there are some gems out there, too, but wow, there are some truly horrible ones!

Thanks in advance to you all who respond...



  • Question 1: I am 8 weeks post op and on a scale of 1 to 10 I am about a 1 with very little pain.
    Question 2: Was given Vicodin after surgery but only used them a few times when I went to bed. Don't use anything now and haven't for probably 5-6 weeks.
    Question 3: I am retired but feel I could easily have gone back to work after about the 5th week. I am back to woodworking and tile work around the house. No heavy lifting but active.
    Question 4: I am not miserable at all and the fact that my pain is gone and the numbness I had in my arms and hands is also gone makes me happy. If anything, I have to continually remind myself not to do too much.

    I had a hip replaced several years back and had all the same questions before the operation. Afterwards, when I was pain free and walking the golf course again the whole issue seems to have been a "no brainer". With both the hip and the neck things would only be getting worse, not better. Putting these surgeries off might have meant that some part of my health would change preventing surgery. If that would have happened I probably would have been in a wheel chair as bad as my hip was.

    It comes down to what you really think about your current condition and whether you trust surgery enough to make the change. One thing about these forums (hip included) is that you will hear far more sad stories than good ones and it can color your perception about the operations. If you look at the rate of success you will see that it is very high for this type of surgery.

    Probably the most important thing you can do if you have the surgery is to totally adhere to your doctors instructions about what you can and cannot do. I was in a collar for 5 weeks, had a 10 lb lifting limit the first 4 weeks, 20 pounds the second 4 weeks, and am now on 30 pounds until early April. A couple of times I caught myself attempting to lift something that was too heavy and luckily never hurt myself. Scared me a little though.

    Am I alive? You better believe it and I am feeling great.
    Am I glad I did the surgery? Absolutely glad I did it.
    Sometime in April or May I expect to be back on the golf course doing something I love to do..... smack a little white ball and follow wherever it leads me...

    Good luck.
    US Army Retired
    Olympia WA
  • HaloHeidiHHaloHeidi Posts: 10
    edited 03/06/2013 - 10:04 AM
    Hi Chuck,

    Thanks a TON for your response! I am SUPER glad to hear you are doing so well so soon afterwards. I've heard of many who do pretty well soon after, but then it seems to make a turn for the worse at times. Which levels did you have fused? C1-3? With mine, C1-3, I will lose more than half of my ability to turn my head.

    If yours was C1-3, are you able to drive okay? Your ability to look up and down is okay mostly?

    I wish you much continued success in your recovery. You are right that these forums are filled with a lot of horrible stories, and most people come on here seeking answers to what ails them. I've been exposed to a lot of post surgical patients of fusion in my line of work, but I've had none who have had their fusion as high up as mine needs to be. I've seen the good the bad, and the near suicidal because they can barely handle their pain a few months to years after their fusions.

    It hasn't helped me in my decision, that my favorite surgeon told me that my surgery will more than likely be successful...but returning back to work is a bit more sketchy at best. Not a fun thought, I like my work and I'm quite young to have to think of relying the welfare system to survive.

    This doctor also told me that it wasn't realistic for me to think that I can have a surgery like this, and not be in enduring pain at some level for the rest of my life. So, I was wanting to know what that sort of life might be like, and if it's worth wanting to go through that or not.

    Thanks again for your info, and I look forward to hearing more about how you are doing as you recover and which levels you had fused :)

  • I had 3-levels done, C4-C7. Yours is different in that you are fusing the top portion of the neck while I had the lower portion fused.
    My understanding is that the first level, head to C1, is where a lot of the ability to swivel happens. I think you will be able to drive without too much of a problem.

    Your last comment about your doctor saying it was unrealistic to think surgery such as ours would result in zero pain afterwards is something many people miss when they are looking for help. The fact is, my cervical condition above and below where I was operated were showing degeneration. That in itself would seem to say there will be problems that could manifest themselves immediately or over time. All being said, the surgery sort of allows one to reduce pain, increase activity levels, and continue a normal life that will degrade as we age. For me, I see it as having the ability to hold things off for as long as possible.
    I am 68 and a 70+ year old friend of mine with the same 3-levels fused 10 years ago, is doing very well with driving, golf, and bowling.

    Your surgeon might be able to demonstrate on a model of the neck to give you an idea of expected rotation and up-down movements.
    US Army Retired
    Olympia WA
  • 1.) I had the same exact injury and surgery that you are going to have. My pain was around a 6 in the hospital and about a 7-9/10 while I was home. My best advice about this would be to schedule a pain clinic appointment since after about 3-6 weeks most surgeons stop prescribing medicines. If you aren't in too much pain you can always cancel it but most pain clinics can take a few months to get into.
    2.) I have been on a few medicines and it really just depends on how your body responds to them. For example I was on Oxycodone which didn't make me feel "out of it" at all but for another person it may make them completely "out of it". I have also been on Hydrocodone and methadone but the thing that helped me most was a nerve block but that was because of my spinal cord injury. One thing that you need to ask your surgeon is about ibuprofen. Some surgeons allow it, some don't. My surgeon said there are possibilities that the decrease in blood flow can stop the fusion from actually fusing.
    3.) I'm currently in school full time but at first it really takes building up to it and not overdoing it. Listen to your body!!! When it tells you to stop or you need a break do it because if your like me then I pay for it the rest of the day and usually the next day too.
    4.) There are times where I regret it however many times if you don't get it done it just gets worse. For me I got a worsening spinal cord injury. My surgeon was surprised I wasn't paralyzed with how bad the injury was. Which when I look at it as a whole I just have to have hope. It can get better its just finding the right people to help you through it.
    5.) it has definitely gotten slowly better. For me I am thankful to be walking but also to have a surgeon who has helped me and stuck through everything with me. You have to find the best surgeon for you and be honest with yourself. Could you live with what your feeling for the rest of your life. The younger you are the better your chances of success are and you can adjust. Find a good surgeon, someone who suits to you- for me I liked someone being brutally honest with me and that is what my surgeon does and someone you can trust your life with. There is someone out there that will suit you best.
    If you want to know anything else since I had the same injury and the same levels fused then you can PM me or just reply back here. It can be a difficult decision but can you really live with it the rest of your life? That is something you have to choose.
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