I need advice!

Well I've never been a part of a forum before so please bear with me if I am doing something wrong lol. Also please excuse my lack of medical terminology I am horrible at remembering all the technical stuff because back when this all happened it wasn't just my neck that took damage and I was pretty out of it for the most part. I made my profile picture my current hardware setup so yall could see what I am working with at the moment.
Just to give yall some back story, I broke between my C1 and C2 back in 2007, my doctor started me with a halo but less than 12 hours after the procedure he decided that wasn't going to do anything. He then put in the set up you see in my picture. He fused my C1 - C4, and placed a piece of my hipbone in between my C1 - C2. I was 20 when this all happened. 

Now about a year ago my right arm started tingling and going numb. I went to see a chiropractor and he managed to stop the numbing after 10 sessions. I couldn't afford to keep seeing him and about 3 months after I quit the tingling came back, only this time it brought with it a burning pain. I finally manned up and went and saw a neurosurgeon. 

Now all my tests are done and just yesterday I was given my results. I will have to have some form of surgery. He said that all my problems and pain is a direct result of the hardware that the other doctor put in. He explained that if I had been a 60 year old woman with that hardware then it was fine but for my old doctor to of done this to a 20 year old is wrong. And that the bars are too long and basically they are stabbing me in the C5 area everytime I look up and they are forcing my head forward. 

He layed out my options which are as follows:
1. Acdf? On the C4-C6 
He doesn't recommend this one because he said the hardware on the back of my neck could possibly force the front plate to fall off?! And he said eventually C6 - C7 will disintegrate.

2. Go in the front and back, bend the rods up so I am not being stabbed by them, and fuse C4 - C6 and eventually down the road I would need C6 to C7 done as well. He really wants to go down to T1 but he said the choice is mine. This is the one he would go with but he said I will not have any ROM in my neck.

3. Disc replacement C4 - C6
He said this is another ok option but he said I would have to get them replaced at some point in my life and they could only last 15 years. (Which means best case scenario I would be back at 45) and it of course would also be a total fuse so no neck movement. 

So those are my options. He sent me home to think about them and again I apologize for my wording I am horrible at remembering medical terminology. They just talk to fast for me.

I really am torn on how to handle this situation. On the one hand I want to be pain free, I'm tired of popping pills all day just to survive and I'm also tired of arguing with doctors just to get some hydrocodones. On the other hand I don't want to loose all of my range of motion in my neck. From what I have gathered there are alot of people on here with more hardware than I have ever imagined. So I am hoping yall can be honest and upfront about what I'm really facing here. And keep in mind I am very active and 30. 

Now for my questions...
1. If I get option 2 and he fuses down to my C6, will my C7 and lower just mess up and start something else down the road? 

2. If I lose all of my range of motion would I even be able to fire a gun? ( I live in texas and I hunt deer every winter, I shoot a 30.06) 

3. Will I be able to look up and down or will that all be gone too?

4. Is disc replacement a good option? Will I loose all ROM or will I have some movement?

5. Couldn't they just shorten the bottom bars to keep them from stabbing me in the neck and forcing my head forward? Or has the damage gone to far and now I'm just screwed? 

6. Is it worth dealing with the pain in hopes technology will get better later down the road and maybe I won't have to sacrifice all of my ROM? 

7. Can they remove all the old metal and replace it with better hardware? And would that do anything to help me?

That's all I can think of for now, I am sure my post seems scattered, and I apologize if it is. I really wasn't expecting all of this to happen, I thought injections were an option but my doctor is saying that it's a 50/50 and I would have to get them often. I don't know anyone personally that has or is going through this, so I feel very alone in my situation. Most people don't understand how I can look so normal and yet be in so much pain, until I show them my x-rays then they look at me like I'm Frankenstein's monster. 
Thank you to anyone willing to answer my questions, I know a few might seem dumb or silly to worry about but I really just wasn't prepared to deal with this. I have spent the last 10 years praising the original doctor, only to find out that it's because of him that I am going through this now. 
Thanks all!


  • Hi Kristina.  So sorry for all your pain.  I understand.  First I would research and go to the BEST neurosurgeon in your area.  See what the say - bring all your imaging.  Unfortunately nothing will ever fix you 100 percent as I am sure you are aware.  Follow his instructions then get a second opinion by the best Orthopaedic doc in your area.  If both decide you need surgery at this point I would have the Nuerosurgeon do it.  Best of luch!
  • Hello ACDF2009, 
    Thank you for replying, So far I've seen an orthopedic surgeon and now a nuerosurgeon. They have both told me surgery is what I need, before the orthopedic surgeon saw my images he was saying I could try injections but after all the tests he said this is beyond what I do, you need a nuerosurgeon. When I got into the appointment with the neurosurgeon I was already pretty set on I am getting any or every surgery that they might suggest.

    What I didn't count on was the fact that all 3 options I was given have side effects/sacrifices I would have to make. I mean I know that with everything you do there are consequences, it's just when my wreck happened and I broke my neck, I really did kind of walk away from the whole situation, I mean of course after 4 months of recovery and healing and stuff, but if you were to look at me directly and see me walk around you would never know that I have all that hardware underneath my skin. Which is why I think I am having such a hard time processing all this. 

    The nuerosurgeon I saw did tell me two other neurosurgeons that are in the top around my area, and I actually plan to see both. Unfortunately it's a process because I am in between health insurance. (My works cancelled me because my hours dropped dramatically. I think they just knew all this was coming and didn't wanna deal with me, just kidding. 
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  • It is a long hard road and only us who go through this pain understand!  :). I will keep you in my prayers.  Keep your chin up (not literally lol if you are like me it would start to hurt lol).  I am on a long road myself and it does get overwhelming.  Keep me posted!
  • memerainboltmemerainbolt IndianaPosts: 3,514
    Kristina, Welcome to Spine Health!! You're fine, don't worry about wording, we understand lol.
    You've been through a lot, to say the least. But I'm so sorry you are going through this so young.
    I do agree with your decision to get another opinion.
    To get more of other member's experiences with this type of surgery, look at other discussions, especially December Surgery buddies. These types of discussions go from pre to post op surgery and everything in between. Also check out January Surgery Buddies.
    Keep us posted on how you are doing and when your appointments are.
  • If you can check out my piprbill posts,  long story short I am fused from the occiput to C7, have 0 range of motion and would do it all again if needed. Am learning to shoot again rifle and pistol. had to stop as a rescue diver for search and rescue, but run a team from the boat. play the bag pipes and am fully employed as a hydroelectric power plant mechanic. I am a very active 70 year old male who was given the choice of and I quote, Being like C Reeves or fusion. I opted for the fusion, went front and back at the same time, got almost all of my functioning losses back and am nearly pain free for the first time in years, used cadaver bone instead of mine and after all of that still cant play the piano or spell, (couldn't prior either)  Its a journey that is currently 17 months along and the only problem now is an occasional spasm that requires a relaxant maybe 3 times a month. no ROM means being creative about things like driving, diving and shooting and looking up and down. requires a good attitude and a good sense of humor  I try to look at it as artificially induced perfect posture. What I really miss is sleeping on my side, as I sleep in a lazy boy recliner, was blessed with an outstanding and honest NS and crew. feel free to e mail me or what ever, if I can do any thing to help your journey let me know, a total cervical fusion is, I guess rather rare, and I have not been able to get much guidance, but am doing well.   Best of luck on yours and follow the advice of your NS and don't be afraid to ask those questions you think are silly, they all count, take care, stay safe   piperbill 
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  • memerainboltmemerainbolt IndianaPosts: 3,514
    Piperbill,  what an amazing story!! Thank you so much for posting such a positive recovery.
    Your attitude about your surgery and life is awesome. I've always quoted Viktor Frankl, "One can make a victory of experiences, turning life into an inner triumph, or one could ignore the challenge and simply vegetative".
    And you, at your age, have done exactly that.
    Thank you again, this will be so inspiring for so many others.
  • memerainboltmemerainbolt IndianaPosts: 3,514
    Kristina, how are you doing?  Have not heard from you and wanted to check in with you.
    I know you're going through a lot right now, we're here if you need us.
  • bionicwoman87bionicwoman87 Posts: 6
    edited 02/27/2017 - 12:40 PM
    Thank you everyone that has replied, it does mean a lot to me to have other people that just understands. I'm doing good, still taking Norco daily but I am managing. Also thank you for the info on the post and pre surgery, I've found a wealth of info on there. I am now almost convinced that disc replacement would be the best option for me right now. Even though it ensures that I will have to have another surgery at some point in my life, but I am hoping by then maybe medical science will be able to grow me a new spine or something lol. 

    I do have a question for everyone, 
    Do y'all feel any guilt when it comes to your spouses? 

    I feel horrible for putting my husband through all this, he has been wonderful, but it's just not fair to him at all. We haven't been married a year yet and already I am falling apart. Other then that I am hopeful.
  • memerainboltmemerainbolt IndianaPosts: 3,514
    Bionic, boy do we feel guilty!! There have been many discussions here before on the guilt trip.
    We have been very happily married for 27 yrs. I've always done everything, groceries, errands, clean, cook, laundry, yard work. I spoiled him bad lol!! He could not cook. I've had surgery before and have been sick on occasions. He would always bring home something to eat. But, as he has told me more than once, I wouldn't let him take care of me.
    This time I did. Omg!! What a difference in both of us. Plus, he retired Jan 1. so that helped. He has learned to cook, I supervise but I let him do it.
    The key is letting go. Why should I feel guilty over something that I had no control over? 
    But you will get fixed and y'all will move on in life. But for now, let it go. What would happen if it were him? You'd take very good care of him.
    Good luck, keep us posted.
  • Hi yes I was diagnosed with degenerative disc disease and it travels to my arms elbows fingers and hands where it just throbs too the point I just want to cry any suggestions what I can do I take 1200 mg of gabapentin plus 10 mg of muse relaxer a day 
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