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22 year old son has broken neck over 12 years unknown and now needs a c1 c2 fusion

Hello everyone,
My name is Angel and recently we have found out that our 22 year old son has been living with a broken neck for at least 12 years. He went into the ER to see if he could find out why he was getting migraine headaches. We of course were very shocked to learn that he has a broken neck as well as be told over and over again that they dont even understand how he is alive today. Anyway he is going to have his c1 and c2 fused and I guess using screw stabilize his neck as his brain stem is stretched as well. I was hoping to find out if anyone else has experienced this surgery and could fill us in on what the recovery process and what we will be looking at as far as Joe returning back to his normal life style. I just really cant even grasp all of this and am hoping that if I become a bit more knowledgeable I will have an easier time grasping these recent issues.
I wish there was a way to post his ctscan cause it is so amazing and scary at the same time to see it. I also know that he definitely has some permanent damage to his spinal cord so this is why the urgency to stabilize this neck to prevent anymore damage. I would like to say though that although via ct scan my son looks like hes in bad shape, other than headaches he has lived a normal life and at no point would we have ever thought that something took place that would break his neck like it is other than the look mom no hands fall from his bike that required stitches in his chin and a trip to scandia where he rode the indi cars and was hit from behind by another car which threw his car into a metal railing that had no tire for cushion as they hadn't replaced it yet. The only injuries we seen was he had bruising to his face but never complained of neck pain.

Thank You in Advance
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  • AllMetalAAllMetal Posts: 1,189
    edited 11/03/2013 - 7:37 AM
    I can't imagine how scary this must have been for you. I hope the surgery goes well, that it cures his migraines, and that he can go forward with his life without further issues. Best of luck to him and your family as you all go through this.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • This is totally un- believable I'm shocked that the ER he went to did Not find this. My nephew broke his neck at 13 he started looking as white as a sheet, my Sister took him to ER and he had to be transferred via helicopter to a hospital that could handle the Surgery. He is now 34 and is doing great. I hope and pray your Son has a successful surgery!!!

    Please keep us updated, you have come to the right place for Support. I'm sure someone will log on and read this who has had the levels you are speaking of. My levels are c4-c7. I have had 2 cervical surgeries. It's not a picnic and it is a long recovery. Your son is young so he will heal quicker than an older person. I am not a Dr. I'm just saying this because my young nephew healed very quickly. My prayers are with You and Your Family during this hard time.

    ACDF C4-C7 5/13/2010. Synthetic Bone Graft Failed Fusion.
    PCF C4-C7 8/13/13. Rods and Screws Fused in 3 Months with Autograft.
    C6-C7 Spineous process Surgically Shaved Off 3/11/14.
  • Actually i dont think i explained it well enough but infact it was the ER that discovered his broken neck. Thank god cause we had no idea. They say he is a miracle and they cant explain why he is not paralyzed or even worse no longer with us. Its all so crazy to me. I really hope someone can help me understand what were in for. I do know that due to his spinal cord damage and the original break that he is more at risk for serious complications but I just hope to get some insight on what is ahead of us.
  • is there a way to post a picture. I would love to post his xray its so scary amazing unbelievable shocking and more when you see it?
  • LizLiz Posts: 7,832

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • I would love to get some opinions back. Has anyone ever seen a broken neck like this let alone where the person has lived liked this for were guessing at least 12 years?
  • JohnsmomJJohnsmom Posts: 2
    edited 11/08/2013 - 4:20 PM
    Hello, I'm new. I read your post about c1 c2 fusion. That is what my son has to get done the first week of December. He is 15 years old and injured his neck 2 months ago during a football game. He passed out after he got home. We took him to an urgent care. They did a ct scan and told us he had two fractures on his c1 but they could not determine if they were old/congenital or new. They sent us to Children's Hospital. He was admitted, several tests and scans were done. He was in the hospital three days.
    He spent the next nine weeks in an Aspen collar, hoping for some signs of healing . We were told he needed to be very cautious. That he could become paralyzed or worse if he were injure it further. After nine weeks in the collar another mri was done. It only showed slight healing, still fluid and edema. So now he has to have surgery (posterior) with rods and screws. We are very worried and saddened but at the same time so grateful that he is alive.
    They told us he has one congenital defect/break in the back of the c1 and that that actually saved the c1 from shattering when he got injured in the game.. He also has one either new or old break that received new trauma and widened it. Anyway, I related to what you were saying about your son, Joe. Trying to understand the gravity and seriousness of it all. And wondering how my son managed to finish playing the football game with a broken neck and not to have died. It's mind boggling. Angel, please let me know how things go with your son, Joe. I've read all the posts on c1 c2 fusion on this site, it apparently is not very common.
  • Well my son was scheduled to have the posterior c1 c2 fusion with instrumentation tomorrow however the hospital has changed the surgery date to Thursday. I still have so many questions regarding this surgery and his recovery. I hope to maybe get some insight from all of you. So I can be better prepared. So I am going to post my questions and hopefully some of you will be able to answer some of them. I am also fully aware that every person is different some take longer to heal than others and what one may go through doesnt mean that all go through.
    1. After surgery how soon do they try and get you up and walking.
    2. Could he have problems eating beings it is his neck.
    3. After he comes home are there any modifications that we could make to help him get in bed or out or anything else around the house that could be modified to help him.
    4. Is he going to be in a lot of pain. (thats the hardest one for me)
    5. losing 50% of moving his head left to right seems life altering is it?

    These are just a few questions I have. So please if you can help me with these questions.
  • I will pray for your son's surgery to go well. I look forward to the answers to your questions as well. I check the board everyday to find answers. It is so scary. My son is to have the c1 c2 the week of Thanksgiving or the week after. We meet with the neurosurgeons and orthopedic surgeon on Thurs. for the final plans. I bought a recliner for him in preparation for his recovery as well as some extra pillows, a heating pad, and I still need to get an icepack. If you can please update on your son's surgery and recovery. I will look forward to learning from you.
  • Summi1408SSummi1408 Posts: 176
    edited 11/18/2013 - 6:10 PM
    For me I was up walking the day after surgery. He will probably prefer sleeping in a recliner chair. I had to use a walker. Hospital gave me a 3in1 potty. Can be used as bed side toilet, shower chair, or to raise the toilet with arm rails on it. It made it a lot easier to use the bathroom.
    It was hard for me to swallow for about 2 weeks. So soft food is a must pudding, soup, jello, ice cream and doctor told me to not drink water, but to drink carbonated drinks it help you not choke. And bendy straws a must since you can't tilt head back to drink normally.
    I suggest to also get some colace(stool softner) maybe some milk of magnesia.

    There is a sticky at the top of the page that gives you a good list of things you may need after surgery.
    Praying your son has a great recovery. And praying for you to Mom I know this is hard on you.
    Acdf C5 C6 12/13/12
    Laminectomy and Discectomy L5 S1 12/12/13
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