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congenitally fused c5, c6....anyone have/heard of this?

AnonymousUserAAnonymousUser Posts: 49,607
edited 06/11/2012 - 7:32 AM in Neck Pain: Cervical
To make a VERY long story short I will skip the details of how I found out that I was born with whatever it is that I have, and just ask for any information anyone might have on the subject. My c5 and c6 are fused, I just learned about this about a year ago and have been told that not much can be done to fix it. I would greatly appreciate any feedback. If you'd like more details I'd be happy to share. Thank you :)


  • do you have any pain or symptoms from this?
  • at times the pain is crippling. It has affected my muscles as well. I have arthritis in my neck, hips, hands and feet. I've had many random symptoms that have all lead back to this.
  • I've heard of people being born with levels fused but don't really no much about it.Why is there nothing they can do about it,is it too dangerous to separate the levels and put in discs?
  • Well I've only known of my condition for about a year. In that time I've been seeing my chiropractor and i've told my MD but he didn't seem too interested. I've been dealing with another illness up until about a year ago when i had my tonsils removed as well. I've been debating about asking for a referal from my MD to go see a specialist and try to see if there is anything that we can do.
  • Hi BKS,

    I was born with T4-T5 fused, and every doctor I've talked to has told me it shouldn't cause any problems and it's nothing to worry about.

    When I saw my MRI films a few years ago and saw the fusion, I didn't know what to think of it. I was a little scared, to be honest, when I saw a bunch of healthy discs and then just two vertebrae on top of each other with a tiny black crack in the middle. I asked my neurologist, orthopedic surgeon and pain management doctor about it and every one shrugged it off. I do have pain around that area, but I also have a T8-T9 herniation, so that could be why.

    None of my herniations were caused by any accidents or lifting incidents or anything of the sort. When I was around 12 or 13 I started getting sharp pains and gradually over the years it has gotten worse and worse. Right now I have a herniation at T8-T9 and a reherniation of L5-S1 after a bilateral laminectomy, foraminotomy and discectomy two years ago. Although all my doctors have tried to tell me different, I am somewhat convinced that this congential fusion or whatever caused the fusion in the first place while I was developing, has caused my back problems.

    Unfortunately, like you said, there doesn't seem like there is much that can be done. When doing research on congenital fusions a while ago, I read about cases where they will do surgery on congenital fusions to relieve pressure on the spinal cord or to correct stenosis due to the fusions, but most of these cases have been on people with Klippel-Feil syndrome. (http://en.wikipedia.org/wiki/Klippel-Feil_syndrome) That disease is usually characterized by 2 or more cervical congential fusions though.

    I wish you the best. I'm sorry if I was rambling, I just wanted to let you know you are not alone :)

    Take care,
  • thank you very much! that informationi was very as helpful and learned a lot more than i knew about this type of thing. I think my parents and i have decided that it's finally time that I go to see a neurosurgeon and "real" doctor to get the offical mri and other findings as opposed to just seeing the chiropractor i am currently. I don't feel better for very long after i'm adjusted, and the research i've done says that what i have will get worse with age and is degenerative. I just need to go get some answers!!
  • Hi,
    I also found out only 4 years ago that I have a congenital fusion at C4/5. It has caused stress and put more pressure on the levels above and below for movement. That is why I have 2 levels that have herniated in my neck. ( one above & one below) All this was discovered when I had a big flare up after wrestling with a wet towel that got stuck in the washing machine-( really!!) I also have DDD and arthritis and spondy. I have seen 3 Neurosurgeons who all said that I am not a surgical candidate. I also found out that I have herniations at T 5/6 & T 8/9- don't know why?????????? I do have lots of pain symptoms! They are all on one side that correspond with the herniations. The pain is all on one side of the neck that radiates down to the middle of the Tspine and diagonally to the shoulder blade. The pain also goes from the neck to the right shoulder and the trap muscles. I have trouble with my right arm and right shoulder and right hand and digits. I have had success with the Fentanyl pain patch, topomax, weekly lidocaine trigger point injections, warm pool therapy, flexeril, and a wonderful husband. I must say that part of this is my fault. I was stubborn and didn't want to go on pain meds. I tried 5 ESI's, 1 medial branch block, & 1 rhizotomy/ denervation/ radio frequency nerve ablation. I waited too long in pain and got frozen shoulder syndrome, before I started the heavier meds. Everyone's situation is different, and many people go for years without even knowing that they have fusions. I had symptoms, but I was so busy raising my children that I didn't put the clues together. I just started to modify my behaviors. I went 40 years in denial- LOL!

    My pain management program and therapy are working! I wish that I didn't need the meds, but I am thankful that I have relief. The goal of the therapy is to delay increasing the dosage of the patch. I know that I told you the LONG story- sorry. I am also thankful that I found this site. I have met so many wonderfully supportive and kind people, and I have learned so much. If you have any questions, feel free to PM me anytime!!!

    Good Luck & God Bless,

  • I've recently been diagnosed with a congenital cervical fusion in c5 and c6 too. Had neck problems since my early 20's (i am nearly 40 now!!)but no xray until a month ago when i was finally diagnosed (hooray for the NHS!). Some DDD to C4 too. I'm seeing a Chiropractor now and start Physio next month through work (i am a nurse :< ) I'm getting used to living with the pain which for me is more like a constant really dull ache. Some neuro probs too in my hands. Does anyone else have problems with muscle fatigue? I feel exhausted most of the time now. Trying to keep positive though and as active as i can. Any tips for excercise?
  • After having horrible headaches which I was assuming as tension headaches because of how they would start, I decided to start with a chiropractor. He did xrays and said I had a C6/C7 partial fusion. My range of motion was good, at times I would get dizzy though which was weird but the headaches were awful! After a few adjustments I didn't feel much better. Then came the neck traction device. OUCH! I did that twice and since then I have limited range of motion in my neck and chronic pain in my neck but the headaches have lessened a bit. A trip to my primary Dr. and more xrays show it is a C5 and C6 partial fusion. He prescribed Soma which I would take at night, and I got a special pillow... not much progress. He suggessted PT but I'm scared to death to have anyone else manipulate my neck now. I'm not sure what other route to go. I'm tempted just to be medicated since the options aren't really out there...
  • I too have this issue. I feel like lifting my arm or a leg and having it weigh 500 lbs. I thought it was exhaustion and went to Dr. for that concerned too about depression, I was told to take an adrenal revive vitamin supplement that is compounded in a pharmacy. She was certain that's what was causing my issues. I'm not certain I'm seeing the results with it though...I can usually make it through the day with aleve and ibuprofen, but by the time I get home I'm done... Very frustrating. Supposedly having this be congenital why now at 32 is it an issue?
  • Yes, I've heard of it. I have it also and found out when I had an x-ray of my neck taken after a car accident. Stay away from contact sports. Find a neurologist or orthopedic or physiatrist that will treat Klippel-Feil. I have some pain radiate down my arm and have to have a good pillow to sleep on. Hope that helps. It is a congenital problem. Good posture techniques help.
  • My adoptive sister (no genetic relation so our issues aren't connected) also has a congenital C4-5 fusion that wasn't diagnosed until she processed to go into the military in her early 20's. It explains the headaches and some neck pain she would get over the years. She actually manages quite well with it using acupuncture and OTC meds at times. I know she discussed surgery at one point, but opted against it as it was very invasive and she feels she just doesn't have enough issues to go there. However she does have slight bulging of discs above and below that fusion that may become an issue down the road.
  • Hello Everyone,
    I was diagnosed with my congenital fusion at the age of 12 when i fell and broke my collar bone. At that age i had no pain or any issues with my neck. However around 14 years of age, during my massive growth spurt i suffered from various amounts of pain and many many muscles spasms which were managed by Valium!
    My parents took me to see a chiropractor who adjusted me around 3 times most weeks, but rarely did it help the symptoms, if anything just delayed them. His help was important though because i worked really hard to maintain good posture, and still do.
    Now at 26 years of age im finally at the end of my tether, especially since the pain is effecting my daily activities. I have had an xray back in may that says spinal fusion at c5/6, degenerative disc changes at c4/5 and c6/7 with degenerative facet joint changes at c2/3, c3/4 and c6/7. There is a resultant neural forminal narrowing on the right at c3/4 and c4/5.
    Ok so none of that has been explained to me, i was just referred to a specialist and am having an MRI next weekend to find out more. I hate how no one tells you what all of this means!, obviously Ive googled it all, but still would love some clarification.
    Just wanted to let you all know, your not alone!
    If in doubt seek a second opinion, i think i should of had mine checked out much earlier than now!
  • hello i was also born with sane disc partially fused which has caused alot of issues with the discs above and below in fact i had one disc removed a donor disc put in and a plate and 4 screws for the fusion he also removed a huge spur spurs i still have to have another cerical disc 6.7 they rae just as bad and also have more spurs ! i have rheumatoid arthritis so that doesnt help things at all ! I am doing well since the surgery nit as bad as i thought ! good luck to you !
  • hello i was also born with sane disc partially fused which has caused alot of issues with the discs above and below in fact i had one disc removed a donor disc put in and a plate and 4 screws for the fusion he also removed a huge spur spurs i still have to have another cerical disc 6.7 they rae just as bad and also have more spurs ! i have rheumatoid arthritis so that doesnt help things at all ! I am doing well since the surgery nit as bad as i thought ! good luck to you !
  • My ortho told me that a lot of people are naturally fused and don't have problems. He told me this because he fused me and I do have problem with it. So it is so difficult to have an answer. I guess one have to continue trying to feel better and move forward. But when I read this I question the fusions as an alternative for some people. I am a firm believer in fusions if they are limiting your walking or the use o your arms and if it affecting your day to day life... this is my opinion. I know of people that are great with the fusion but not so much.
  • I have it too but I think I am older that most of you that posted here. Sometimes it is called Klippel Feil. Only one NS I have met called it that. The rest of the medical professionals just say congenital spine fusion. I have severe DDD at 52 especially above and below the fusion. Recently a OS offered a ACDF of one level above and below C5/6 then plate and screw together. Sort of a 3 level fusion. He warned me that my adjacent segment disease could increase if he does this. It might help but not sure it will and I should plan for 4 months recovery. Hubby is totally against me doing this. I need to get a second opinion. My biggest advice is to try to keep your spine as mobile as possible. Stretching and do the exercises you get from PT. I believe this is what help me to be as functional as I was until the last few years.
    Severe DDD. Klippel Feil Deformity. Cervical Foraminatomy that turned into Lamy. I have tried so many treatments, therapy's and medications.
  • Hey guys thanks for responding, I finally receive my MRI results next week and am scared they will say there is nothing they can do. I'm now 27 and for the last 3 months have suffered from lots of tingling and numbness in my right arm as well as severe migraines. I try really hard to keep mobile but there are days when I can't hold my head up. I went to the local emergency room after a particular bad turn with full numbness of my right arm and couldn't hold my head up at all, I also had a few facial symptoms.... Doctors there did not seem at all concerned and sent me home with 10mg of Valium. I really hope to get some answers!! Any comments tips or pain managent..... Besides gobbling down pills are most welcome!!
  • I know how you are feeling! I've been avoiding meds for a long time now, eventhough I still have pain and sometimes it gets pretty bad. My headaches are the worst. I take on occasion muscle relaxants to help with sleep or Advil during the day, since I can't function on any of the stronger stuff.

    I had a fusion a year ago and will find out next week, a new MRI, if my current issues are from scar tissue on the spinal cord. Having spine problems requires a lot of patience.

    I use heat, ice and massage. You can give self-massages with a tennis ball or I also use a Theracane. All of this is temporary, but can help with pain and muscle spasms. Good luck with your MRI results!
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • I am glad to find some kindred spirits. I have had problems for about 14 years and just had L5 S1 disk replacement in November 2011. However, since then my neck has gotten really angry and causing me much more pain than my back ever did. I am getting some pain management for my symptoms but only today got my Chiro. to pay attention to me and he took new X-rays and listened to me and we know I have fusion at 5/6 and 2/3, slight case of spin bifida. Throw in a probably extra rib and little bit of scoliosis and I'm batting a 1000 for KFS I think. But now I need to get my neurosurgeon on board. I am a workers comp case which just complicates it all more. Any advice is greatly appreciated. Post Script: I really have no idea how to properly maneuver my way around this site:)
  • Hi guys,
    I had my appointment with my neuro today I've finally been given some answers! My discs are degenerating rapidly around my congenital fusion c5/6 both above and below and causing some pressure on my spinal cord. He said to first try the injections and that they may give me some relief, my alternative is to have both areas fused. Wow that sounded scary. Originally from my MRI he thought my mum was the patient which made us laugh I suppose coz I'm 27 he was not thinking it looked like a 27 yo neck!
    Would love some feed back on others experience with the injections... I'm told I need them in two different places. Is this painful? Is there recovery time? Do I go back to work the next day.... I seriously have no idea!!
    Also any experience you have had with the fusion surgery would be awesome! Advice comments opinions all very much welcome.
    Thanks I hope everyone is doing well :)
  • Dear all,
    I have C6-7 congenitally partial fused. Disc herinations are found mostly in C5-6. ACDF Surgery done on C5-6 as a result.
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