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NEW Here: Questions on C1 C2 Fusion (Os Odontoideum)

HaloHeidiHHaloHeidi Posts: 10
edited 11/30/2015 - 6:23 AM in Back Surgery and Neck Surgery
So, I was recently told that I need to have my C1 C2 fused and I'm not looking forward to even the thought of it. It's not usual, it's off to the left part of my neck more on the back of my head/neck part occipital region. I've seen the images the doctor's have taken, and I can see and tell that it's unstable.

I've searched the web to hear how people are doing after a fusion this high up, and to be honest it mostly sounds like a long horror novel. I understand that pain from the surgery itself isn't a treat, but it's the ongoing pain I've read about that scares me of people remaining on narcotic pain meds with unrelenting pain where no help seems to be within reach. I've read how some people's pain remains or have worsening pain continually after the surgery. Then I've read of those who are fine for a few years to many years when they are suddenly hit with pain that radiates without ever letting up. THEN when help is sought by a doctor, they are only told, "Well, the fusion is holding up." Like as long as your head is in the right spot, deal with the pain.

I've brought this up with surgeons I've met, asking about the known chances that fusing C1-C2 will put pressure in other areas that are bound to result in ruptured disks, arthritic changes, and more. And the surgeons almost seemed perturbed that I asked about that and all just repeated, "The goal of surgery is to stabilize the area." Like I cannot hear or something, I know that doc, tell me what I don't know like the questions I'm actually asking you! Hmmm? LOL!

So, what I gathered from this sort of repetitive scenario is that the surgeons do what they love, cut, hammer, screw...and your resulting symptoms be damned?! I have now asked 4 surgeons their opinion and asked them each what their method is...and NONE wanted to discuss what they would be using in the surgery? NONE knew or would say the name of the procedure they'd even be doing...is this some sort of doc code? I've never seen such a thing...I work in the medical field and if a patient asks a direct question...I need to provide an answer...but these docs squirm and churn out of it...and trust me I was quite direct and was told things like, "It's not a bargaining I'm wanting to do", "It's the best technique available--gold standard" and then one actually shrugged his shoulders!

And truly...all I asked is what does the procedure fully involve and what's the technique called!!! And I'm not in a small town/city, I'm among some of the nation's top ranking docs in their field...and they drop the ball on mentioning much of anything on this? Soooo odd!

Ah, but I digress...I really want to know from real people what your experience has been...did you wear a hard collar and for how long and can you ever take it off?

At what week did you no longer need to take heavy pain meds?

Do you still need to take pain meds of any sort?

Do you feel normal and are you able to concentrate with a clear mind from nagging pain? This is a biggie for me and big worry!

What was the name of your procedure?

When were you able to go back to work or did you have to do disability?

How bad is the pain if they used your own bone for fusion?

Did you have an ortho-spine surgeon or neurosurgeon?

Has anyone gone to Johns Hopkins or Mayo Clinic to have theirs done? Did they use a computer guided technique?

I was someone toying with the idea that if I've always had this threat of death and such, without knowing it--and with some folks I've read regretting ever doing their surgery who feel they aren't living their life anymore--I wonder if it would be so bad to let the way God made me remain? I was born with this defect and was fine until I had a minor neck injury a couple of months ago and I was suddenly met with this being too progressively unstable...

Thanks for reading this drawn out rant... :)
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Comments

  • There are several success stories of C1-C2 fusion and the reason you don't read about many on the Internet, is because they are back out living life. A friend of mine who had that done just got married and is having a blast living her life.

    I had a C2 Ganglionectomy with partial removal of C-1 and C-2 Laminectomy. It was very frightening going into this surgery based upon the fact they were going in so close to the base of my brain. Even after having 7 lower back surgeries, I still could not shake the fear I had prior to this surgery.

    My surgery was done by a group of neurosurgeons some from the Navy and some from Johns Hopkins. I couldn't have been in better hands. So of course in response to your question, I would lean towards Johns Hopkins vs Mayo. The key though is being confident in your surgeon. The only thing I was confident with and comfortable with prior to surgery, was the surgical team.

    As for the issue of God making you one way and should you let it be. Well... my surgery had to be done twice after the first one was aborted a few hours in. What we didn't know going into the surgery was that a blood vessel was filling up most of the space right at the base of my skull. Had it not been found, chances of a massive stroke happening down the road would have been extremely high. So it was utter luck it was found and dealt with before it ever had the chance to rupture. So this put the original surgery on hold while the blood vessel was dealt with and an emergency angiogram done after closing to make certain I still had adequate blow flow to my brain. 8 days later the original surgery was completed and I am so grateful it was done!

    So I feel it was a blessing in disguise that I had the surgery that allowed the surgeons to find this problem before it ruptured or put too much pressure on the base of my brain.

    I feel we are given opportunities in life to deal with things we might not have otherwise dealt with in time. I don't think these are coincidences.

    Hope this helps.

    "C"
  • My son, a 20 year old college student, recently underwent a cervical fusion to his 1 & 2 vertebrae. The doctor is exremely pleased with his results. He wore a hard collar for four to six weeks, I believe it was four. Showered with a waterproof collar. I spent the first two weeks with him disinfecting the dorm and helping him with his daily routine. He is off pain meds now but they are needed for the first couple of weeks just to be able to sleep as you sleep in an upright position. Stay ahead of the pain as it is difficult to catch up. He is in less pain now than he has been in months. Keep in mind, he's a hockey player so he was being banged around daily due to the nature of the sport. His procedure was a C1/C2 Fusion due to gross instability in that region coupled with OZ disease or os odonteium. Physician recommended that he take it easy since surgery -- fusion is not set to be complete until late August. He underwent surgery in late March. Fortunately for him, they were able to scrape marrow from his neck area which allowed him to heal more quickly and not aggravate his hip area which according to the doctor, often your neck fuses and what hurts for the rest of your life is the area where they obtained or scraped the marrow to essentially grow your own fusion. His surgeon was a nuerosurgeon and the second opinion was also obtained from a nuerosurgeon. One in CA and one in CO. He now has titanium clamps in his neck that will remain. We were told biggest risks were the fusion not taking -- essentially nonfusion and infection -- thus the dorm room cleansing. :)

    He too apparently was born with the defect -- as I understand, it is obtained either congenitally it never fuses or due to injury -- I am still ascertaining whether it was an injury or congenital, I do not have the answer to that yet; however, an injury exacerbated it and nearly caused death. The surgery, after recovery, will enable him to lead a normal life. We still don't know if he'll ever play hockey again. We give that up gladly to still have him. Hope that helps.
  • i have been told I need fusion of c1&2 due to RA. i am really scared since I currently have no pain at all.how long did the procedure last?
  • Minnesota girlMMinnesota girl Posts: 5
    edited 11/20/2012 - 3:14 AM
    I had the exact same diagnosis and I did have the surgery a year ago, I have fusion from the base of my skull to the C3 level. I was never given a name to the procedure either, they just told me that they would fuse this area and used my bone, cadaver bone and two metal plates and eight screws. My surgery was done by a team of neurosurgeons. The surgery recovery is undescribable pain meds were used every 4 hours for a couple months, then I learned to tolerate most of it. I am still on pain meds, but haven't used narcotic meds for almost a year. I now take nerve pain meds 3 times a day, and muscle relaxers when I can't tolerate it anymore.

    I tried going back to work 3 months after surgery, (I was a daycare provider) that did not work out, the lifting bending and general body movements needed put me in alot of extra pain. This surgery has changed my life and not for the better, it has been the hardest experience of my life. I completely understand you comment about if this is the way God made me maybe just leave it, I have thought that same thing myself. I often say if I could do over I would have not done it. Not being able to turn my head and living with this pain is life changing.

    Did you have this done? I noticed you orginal post is from a few months ago. I would be willing to discuss this more with you.
  • Thanks so much to all of you who posted here. I had honestly taken a break from some of this info-seeking, just because it was becoming too overwhelming and I was on a mission.

    Now for the update:

    I haven't done the fusion! I am still in one piece, and I still haven't hit my head oddly!

    I found at a later date, that my neck was actually injured mostly after a "whiplash" type injury...it's been such an odd ride, I'm telling you. My biggest challenge is the feeling of instability I have, where my head literally can wobble and can make me feel off-balance at times.

    I get more headaches after the injury and it even messed up my eyesight and gives me odd muscle twitches all over, too! But for the most part, I feel fortunate...and my strength is good!

    I did get an opinion from a top doc who has told me that I have dire instability, and then in the next breath I was told that I was a big risk for having a vertebral stroke if I do the surgery! So, let's see...risk it all for the surgery...or risk it all and remain in one piece while still waiting for another accident to happen?

    So...after sitting around depressed that I was thrown into this crazy scenario thanks to the accident...I Googled "alternative treatment to fusion." It was 4 AM...and my jaw dropped when I found an answer!!!

    There were several videos on Youtube on something called Prolotherapy for neck instability, and essentially for any part of the body causing pain or other problems (EVEN AFTER SURGERY OR A FUSION)! After I teared up, I called them and got my first treatment that made half of my symptoms go away after that first treatment!

    I then digressed a bit when I was told to wear a hard collar for a month, and I am still trying to get back my gains I once had with the initial treatment. It was recommended I have 6 treatments, I'm on number 4 right now. It seems the hard collar kind of made my neck weak, and put it in an odd postion and healed that way--making my symptoms come back.

    What it is, essentially, Prolotherapy strengthens the ligaments that holds things in place. I didn't know I had a "broken neck" all my life because my ligaments were that strong (everyone's are and it takes a powerful force OR wear and tear over years to break it down)! Prolotherapy can make the ligaments nearly 50% stronger than they were before! So I figured, if it was fine without my knowing about it all these years...why not give my body the chance to repair itself to its former glory?!

    What is done, is essentially you receive injections that irritate the ligaments so your body goes more directly to them to repair them...being that ligaments don't have a direct blood supply to help them heal as well as a broken bone does.

    So, I'm giving myself a chance to heal! I'm in no rush to cause myself additional pain or issues, and I think often times that docs can scare us bad enough to make plans for surgery sooner when it can wait while other options are explored.

    I was rushed before by two top docs for a so-called dire tumor that wasn't even cancerous or causing any issues! So guess what? I left it alone...and I'm fine!

    Surgery is SO definitively invasive, where the outcome is never predicted-- only hoped for. I am hopeful that I can heal and be as I was: oblivious to the darn neck having an Os Odontoideum!

    I would urge anyone still enduring pain with their fusion, joints, or back, to look into Prolotherapy...it may help you a ton...it's worth the chance it will! Insurance may or may not cover it, it would be nice if it does...but if it doesn't..still give yourself that chance and be sure they do "comprehensive Prolotherapy". Essentially, that means to be sure they are giving you (if in your neck) upwards of 60 or more injections during ONE treatment. Some people get a dozen and say it didn't work, it's because they aren't being given the proper treatment dosage.

    If anyone wants to contact me about this, feel free. I'm going to send a message to you Minnesota girl right now to chat :)

    I will try to come back here to update this thread again as I continue on my journey...





  • TeamAstroTTeamAstro Posts: 41
    edited 01/21/2013 - 8:56 AM
    I haven't been on here in a while because I am healed but I had C1C2 fusion 14 months ago and I am FINE. I did lose a lot of mobility side to side but i am lucky to be alive. I too have os odontoideum unbeknownst to me. Until I had a motorcycle accident and it was discovered by the ortho doctor on call that night. You can have os odontoideum that is stable. My whole life I have had this but didn't know it because it was stable. Something like a little cartilege must have been holding me together all these years (I'm 50) but the accident changed everything. My head felt like a bowling ball and was very crunchy when I moved it. Turns out my C2 was fractured in the accident and the back half was missing altogether. Any movement like a fall would have impinged my spinal cord and caused an injury like what Christopher Reeves had. He was "lucky" to survive because there were medics nearby but C1 C2 is where your breathing is so usually that kind of injury kills you. I really would go to another reputable neurosurgeon - no one else but a neurosurgeon. I went to Penn in Phila. and they were great. My surgery was done posterially with 4 titanium screws and rods. It has a term like Gaille or something - don't remember - but I was told exactly what it was & what they were doing. Yes, they used computer guided technology to make sure they didn't hit a blood vessel with the screws and they created a 3D image of my spinal column to plan the surgery out. You're not going to a good neuro if you aren't getting the answers to your questions IMO. I went to 2 and they were both very good. Feel free to contact me. I would have flexion & extension xrays done to make sure your instability is getting better if you aren't going to have fusion. One false move like a fender bender could cause you paralysis or death if you are unstable more than 10mm.
    2011 C1/C2 Fusion due to os odontoideum & fracture from motorcycle accident
    2014 L4/L5 Herniation
  • I would strongly advised a 2nd and even 3rd opinion before this surgery,I had this done 15 months ago and just found that it was unfounded,and caused me to have a stroke on the table due to wrong placement of the screw and it hit the artery,needless to say my wife and I were told only that of which they wanted to tell.This has caused perminent partial paralysis,as well as SEVERE PAIN DUE TO LOOSINING OF THE SCREWS! .I will keep all updated do to pending legal action,also seek the opinions of NUERO as well as ORTHO surgeons
  • My husband fractured his C2 with a displacement to the ontoniod as well in June 12. He wore a somo brace, halo then the drs decided to fuse as it was not healing as they wanted it to. He has lost a lot of his left to right rotation but is driving and getting on with life. I used this forum in the early months of his injury to get some great stories of recovery and it helped me immensely to see a future for him. He is only 40yrs old and we have two children who used to love shoulder rides with their dad. He has recovered well, the fusion took and he was up and about working within 4 month however, he gets very tired says that whilst not being in pain, he is in constant discomfort. I also worry about his mental health as he was very fit and did a lot of sports which now he is not allowed to do. How do other people get on after some a traumatic and life changing surgery...knowing always how lucky they were to survive.
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 105
    edited 04/24/2013 - 9:49 AM
    Hi Theresanz,

    I've told my story elsewhere on this site but here it is again.In December and November of 2011 at the age of 39 I had a two stage surgery to remove my odontoid because it was putting enormous pressure on my brainstem and spine and then got fused from occiput to C3. The surgery wasn't an option, it was a necessity, my life and future was running on it. It as left me with limited neck mobility (a loss of 40-50% rotation and 20-30% extension). I went back to work also after 4 months and did PT for 6 months. Going back to work wasn't easy as when I went back I wasn't yet able to turn my neck left and right and I'm a teacher. Hey! Hey! Kids were great though and took turns at laughing at my situation which was ok to me as I understood their point of view. Physio therapy did wonders to get me to where I am today but at one point my physio told me that there wasn't anything more that she could do to improve my neck mobility. I was going to have to get used to it. Like your husband, I was a sport addict and had to stop most of my activities because of all this. Driving is now a challenge and most of the time when we go to big traffic areas I let my wife drive. Nearly 16 months after all this and at 41 yo, I sometimes also wonder about my mental health. I also feel that constant discomfort and get tired very easily. I find it hard to do anything else after my day of work. Being a teacher there's always something to do after classes and there's also all the life little chores that have to be taken care of. It's hard to find people that can understand what you're going trough and at the same time, I always tell myself that there are others that are going trough a lot worse than me. In the end, it's my life and it has changed drasticly in the past few years, for better and for worse. I understand that i'm still lucky to be here, but it doesn't make life after all this any easier.

    Thanks for reading,

    Take good care of yourself!
  • Hi, I realize this is an older thread but curious as to how everyone is doing? Has the prolotherapy still helping Heidi and TeamAstro, we are working with Penn Neurosurgery now in addition to seeking third opinion from Johns Hopkins for my 69 year old father. He is hoping I can find some alternatives to the surgery but seems it may be the only thing to help him.
    From my understanding of it, he needs fusion surgery on C2, C3, C4 & some bone removed... then C1 is separated & that requires the CT scanner in use during surgery to precisely place the nuts and bolts.

    His situation sounds very similar to Heidi's- minimal pain but terrible balance & mobility problems. He is basically a shut- in now.

    Hope you all are doing well!
    Anne
  • DrachinaDDrachina Posts: 1
    edited 09/04/2013 - 2:31 AM
    I also have an odontiodeum , and lived with it all my life unknown to me too. My instability is more than 10mm but I don't have neck pain. My neck muscles spasm up at times but no real pain. The worse for me is that I am a massage therapist and the condition is making my shoulders ache and my left hand tingly at times. Dry needling and physical therapy helped a lot. Unfortunately I am now not allowed to continue the physical therapy and dry needling is only a temp fix. I am not made to live the rest of my life restricted and in pain, so I decided I will not have the surgery and hope God rather end my life and not leave me paralyzed, unable to do anything about it. In time, they might come up with an alternative surgery or treatment that is not as life changing!
  • What did your MRIs look like at C1-2, if you got them? I noticed this (to my eyes) huge triangular-ish projection pressing on my spinal cord at C1-2 in the MRI that was used to diagnose my disc problems at C4, 5, and 6. The surgeon never said anything about it but it looks just as bad as the herniation that they did fix with surgery. I'm just scared they missed the forest for the trees, so to speak. I'll be asking him at my follow up in a couple of weeks, but thought yall might have some insight.
    Mid-30s female w/2 young boys, working from home full-time. Had 3-level ACDF w/plating in June '13. Headaches for over 15 years, chronic pain too for at least 5. Currently having increased pain & headaches & looking for answers/hope.
  • Hi, I had surgery on November 5th for severe myelopathy pain and debilitating migraines. I'm almost 6 weeks post op, still in a hard collar and feeling miserable. I read all these stories of how headaches were instantly gone and people were able to go back to work soon. I have severe occipital pain, also had a craniectomy due to Chiari malformation. My neck and shoulders hurt and bending over is a killer. I'm a nurse so I'm aftraid of what my course will be. Also at night my arms below my elbows sometimes go completely numb and that's so scary. Anyone else had this issue? My migraines are slightly better but far from gone. I just hurt all over my upper back and head. Help!
    Deborah Hawkins
  • Hope all is well!! There are not too many of us out their that I see with this same problem, I had my surf done when I was 19 and now im 43 and at the end of the rope. I have tried and seen too many doctors and I cannot seen to get anybody to help me with the pain. I also get well the fusion is good, so seems they just this I need tondelà with the pain. I have decided after working for 20 something years that I cannot do this any longer and I'm going to apply for disability. I'm terrified but I dodon't now what else to do, this has done me in mentally and physically.. I hohope to here from one of you to see if any of you are doing any better.. Heidi. :-)
    Heidi
  • Here is a request for any feedback from knowledge or experience that may help my situation. To review:
    My 83 year old mother broke her neck 3 years ago. She had c1/c2 fusion and has done remarkably well though this experience aged her 5 years or so. Though she knows her identity and family, she has serious memory issues (memory has been fairly stable since the surgery when it took a major downturn) so it is hard to get a finger on her pain symptoms. What we know is her 2 screws have loosened. She seems to have some pain all the time though mostly manageable without serious pain meds. But at times the pain is severe, across the left breast down the arm and the shoulder/neck area. I get her to lie flat on back with as much pressure off the neck as possible and try to get her to relax. I then leave her alone for a short while (before any pain-killer could have any substantial affect!) and come back to check how she is doing. Most of the time she is much better and doesn't remember hurting so much. Best I can tell the pain comes on when she lies on her side, especially the left. I can't help but think the loose screws are aggravating/inflaming something when her neck is in certain positions. The family wish we could just have screws removed buy we are concerned the affect anesthesia would have on her memory. Perhaps most frustrating, it is very difficult to know to what extent pain medications help. Obviously we want to minimize those but are not afraid to use them when they help.
    Any and all comments are appreciated.
  • LizLiz Posts: 7,888
    edited 05/05/2014 - 8:48 AM
    Welcome to Spine-Health and how to get started here



    This is an old post, for best responses and support I suggest you make a new post, you can do this by clicking on 'create forum post' on the left

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • HaloHeidiHHaloHeidi Posts: 10
    edited 11/17/2014 - 7:40 PM
    Hey everyone!
    Yes, it's been forever and I apologize. I am happy to say that I've NOT done the fusion surgery for my Os Odontoideum C1-C2 instability. I was told how dangerous it was for me to live as I was, etc, that it'd kill me, etc, that I'm screwed, etc... My instability was 9mm, so I went for prolotherapy at one of the top places in the world for it...and I'm happy to say...wait for it...that my instability is now 5mm!!!

    My new and more conservative doctor is now recommending that I can hold off on doing surgery!!! What a treat compared to most of the other doctors I've met out there who wanted to slap me up on their table and potentially cause me harm or death. I say death because I was told I was a very high risk for this surgery.

    I do see the caution of the other doctors who say it's too risky that I should do the surgery to prevent damage to my spine, but at the great risk of causing death I choose another route. It was a costly route, but what's your money worth if you cannot live...literally?

    Doing prolotherapy also helped me in dealing with the pain, helping to nearly cut it in half. If you consider doing prolotherapy, please know that not all places are the same. For your neck instability, if they aren't doing 60+ injections in one visit, then it's not going to be very helpful to you. This works for those dealing with pain even AFTER surgery, so don't think prolotherapy cannot benefit you, too. To learn more about it, just Google "neck instability prolotherapy" videos will come up, watch them and try it! It will cost you $1k a treatment if your insurance won't cover it (most don't) but it's helped spare me surgery at least for now.

    If you have any questions about it, feel free to post or write me. Don't give up out there! As a note, I'm still going for physical therapy to help strengthen my neck and help with my balance and such that has come with this, but I'm always working on it and holding out hope that there will be something developed one day that can regrow odontoids and other bones!

    Take care!!!


  • RadgirlRRadgirl Posts: 3
    edited 11/30/2015 - 6:22 AM
    Please help. I am looking for information on the best neurosurgeons and centers to have this surgery for my 79 year old Daddy. Any help appreciated!

    Dee

    ********************
    Forum rules prohibit recommendations of medical professionals and facilities

    The original poster and most members on this thread have not visited the forum for over 1 year
    Liz, Spine-health Moderator
  • I had a fracture of C-1, C-2 repaired by fusion and wire reduction and, although the halo was tough, I seem to have made it (71 years old) probably because I was in excellent physical shape, and I'm living an almost normal life 9 months after the surgery.  It's miraculous what they can do with wires to reduce a fracture, but what I think you don't realize is you can't expect the surgeon to know precisely what he's going to do until he gets in.  That's why none of the surgeons will answer your layman's questions about what techniques they will use, since they just can't know precisely what they'll be up against until they do it.  
    David Band
  • Maybe I spoke too soon. It's now 3 months later and I am having pretty bad headaches up the back of my head when I first get up in the morning. It seems to go away during the day. I've been prescribed Neurontin and it seems to help. Still I sure wish it wouldn't be a problem. And I'm wondering what in the world is going on.
    David Band
  • LizLiz Posts: 7,888
    edited 09/12/2016 - 7:45 AM
    AttyBand
    his is an old discussion created by a member that hasn't been on the forum for 2 years so will not respond so I am closing it.

    I suggest you create a new discussion


    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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