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C6-C7 ACDF surgery - agonizing over decision

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:34 AM in Back Surgery and Neck Surgery
My husband really wants me to do it. My doctor (rheumatologist - I have mild SLE lupus and have for 20 years) really wants me to do it.

I am REALLY unclear what the chances are going to be of needing future fusions once this is done, and how soon.

I am very confused.

I have been to two Orthopedists and three neurosurgeons who all say that my only option is this surgery if I want to get out of pain. That I don't have to do it now - it is up to me, but at some point I will have to have it, because the disk is herniated, and really collapsed, and there are bone spurs that are also right there causing severe stenosis.

I was really messed up with pain and tingling in April, May and June but after Physical Therapy and Acupunture I have the pain level where I can stand it...and the tingling too. ALthough now my feet are tingling and that is driving me crazy. My neurosurgon says the tingling in the feel is not related, but I just can't believe it is not related.

I have bad days and good days at this point but as long as I don't use my neck too much and use an ice pack I can stand it.

I just don't know if I should put off surgery or go for it.




  • It sounds as if you have done a good job of getting multiple opinions from qualified doctors. The fact that they all say the same thing, should be a good indicator for you. Have you asked more than just the one neurosurgeon about the feet tingling?

    You are the only one that can make the decision to have surgery or not. One thing that is good to consider is your overall health and fitness now versus the possibility of it being better or worse in the future should you elect to wait. The healthier you are, the better your chances of a successful outcome from the surgery and easier recovery.

    I am a firm believer in writing down a list of pros and cons when I have a difficult or extremely important decision to make. I also believe in intuition.

    Hope this helps.

  • Hi Patricia.

    I recently had to make the same decision as you. :S I'm 39 and also have a bone spur in C5-C6 that's pressing into my spinal cord and a nerve(I still get confused over the correct terminology)as well as a slight bulging disk in C6-C7. I'm scheduled to have a level 1 ACDF on August 26th.
    I too have good days and bad days in regards to pain and discomfort, however my 'good' days are becoming fewer and fewer. They used to be determined by 'no pain at all' but are now decided upon whether I can turn my head a little or a lot that day before the pain stabs me. I no longer sleep through the night as I can't ever get comfortable. Whenever I change position I get met with pain from my neck or my shoulder and nearly always yelp from the shocking pain. I've tried using a flat pillow, a down pillow and no pillow...doesn't matter anymore.
    I've had the same opinion by both Ortho Dr.'s and NS and they all tell me the same thing...I will need surgery to correct the problem and to have the pain go away. I've tried spinal injections, pain pills, muscle relaxers, chiropractic care & massage therapy (helped for a few hours). None work anymore to relief my pain enough to function. I have a hard time doing chores & doing the things I love, not to mention the constant pain is leaving me exhausted both mentally and physically. (In case you're curious, my average daily pain scale is about a 7-8 out of 10. However, I consider myself to have a fairly high pain tolerance.) You can usually find me sunken in my couch in the evenings with my heating pad. It's the only thing that offers me short term relief. I rarely take the pain pills (I hate the loopy feeling and they really don't work for me except to constipate me. :| I will occasionally take muscle relaxers at bedtime but I end up waking up bright eyed and bushy tailed at 2-3 AM (|: )
    Because I can't do 'normal' things with my family I'm becoming a bit depressed, frustrated (I'm normally a very active person) and annoyed. I've had to learn to do things a lot slower and because I'm becoming weak in arm strength, I have a hard time doing simple tasks like carrying the laundry basket, taking the garbage out or repetitive arm motion such as scrubbing our shower. This 'issue' is taking over my life and is leaving me with not much of one.
    So, since my problem is only about 3 yrs. old but is progressively getting worse, I decided to go ahead with the surgery now before permanent damage is done and/or I have a lessened percentage of a full recovery. My NS is giving me a 90% chance of a full recovery as of now. He would give me 95%, but he can't explain my left arm and shoulder pain via MRI.
    Only you can decide when the right time is for you. I am very scared of this surgery and the 'what if's' that come along with it. I just feel it's worth taking the dive now that I'm fairly healthy otherwise so I can hopefully start living again. I owe that to myself , my husband and our two teen daughters.
    Good luck with your decision. >:D<
  • You are in better shape than I am. ou get relief. You did not mention any pain meds you are on, just ice. The neros all said that yes you need it, BUT it can WAIT. This is a decission that you must make. Only you. IT is your body. If you want more questions answered, go back to the doctor (nero) you liked the best, and ask him/her straight out how long can you keep going the way you are (guess doctor) and also, what might happen if you put it off too long? What should you be on the look out for? Yhay should help you to make this very private decision about your own health. Good Luck. I hope you find all the answers you seek. Good Health to you.
    PS Also, ask what you can do for preventivitive measures.
    Keep us posted
  • wow...you sound so much like me..I can't believe it.....and my doc gives me 90% too.

    when is your surgery scheduled?

    wWhat have you been told about the likelihood of having problems with the rest of the neck later on in life - that iis my big problem/concern...not so much the surgery itself....
  • They told me that i have to look out for getting weaker in my arms, and then when that happens we have to do surgery. But i have to do it at some point. right now they are just numb and tingly. Pain meds don't work very well on me. I am pretty used to pain, I have had it for other reasons for 20 years. I am more worried about long term damage re: movement. Docs think that i should do surgery now because i will heal better. I have really crappy bone quality, apparently. I have lupus too.

    i would do surgery, but I am really worried about what the long term ramifications are to the rest of the spine and neck once c6-c7 is fused. I am not clear on what the chances are of other parts then needing to be fused later on.

    what have u been told?

    thx for your help!
  • and, of course everyone has one, is that life is much too short to live in pain. If you have a 90% shot at being pain free or in substantially-reduced pain after surgery, I'd say go for it. Pain can cause big changes in our personalities and make our lives miserable. Of course surgery is not fun and should only be done when there is no alternative. I think you know from all the advice you have gotten that you need to do it.


    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • patrica-ca

    Did any of your doctors mention artificial disc replacement as an option? An artificial disc is supposed to allow you to still have flex motion at that level so the adjacent levels don't go bad as quickly. I don't have one myself, though. It wasn't offered as an option because I'd already had a laminectomy at the same level. So, I had C5/C6 fusion in February 2009 and already the C6/C7 has collapsed. I'm not saying that will happen to you, but it can happen. I sometimes wonder what the outcome would have been if I had been offered ADR.

    I can definitely relate to what Buddycamp wrote: "This 'issue' is taking over my life and is leaving me with not much of one."

    Spine pain changed my life very quickly. Things I used to do before without a second thought I now avoid because I'm afraid it will aggravate my pain. I can sum up my current life in three words: Avoiding physical pain.

    Regarding Buddycamp's sleeping problem:
    "I no longer sleep through the night as I can't ever get comfortable. Whenever I change position I get met with pain from my neck or my shoulder and nearly always yelp from the shocking pain. I've tried using a flat pillow, a down pillow and no pillow...doesn't matter anymore."

    I avoid that problem by sleeping with a "Miami J" collar on. I'm used to it now. It's better than waking up with pain or numbness. I tried a soft collar, but it didn't keep me from bending my neck.
  • My surgery is scheduled for the 26th of August (just under 2 wks. from now). I'm still scared and nervous about the outcome, especially after reading about so many others who have had issues after their surgery. However, I realize too that we are all different with our own unique circumstances. Reading the problems helps me become aware and educated of what can happen and to not take this procedure lightly but I'm not overly concerned where it's consuming me with fear. In my opinion, it's worth taking the chance with my NS giving me such high success rate at this point.

    Since it will only be a level 1 fusion and I am in good health otherwise my NS is not expecting me to have any problems after the procedure and is confident I will have very little, if any, reduced range of motion once I'm completely healed. Since you have Lupus though, I don't know if that would make a difference in your recovery? I would be sure to ask your Physician about that.

    FWIW, my NS belongs to the Barrow Neurological Institute (I hope I can say that... :/ ). He performed the same surgery on my Orthopedic Dr. a few years ago and he's doing great! He said I should be back to duning like he was within 6 months of the surgery. =D>

    CM- My Dr. didn't mention anything about ADR. I honestly don't know if it would be an option or not for me. Thank you for the heads up, I will be sure to ask.

  • I am leaving on vacation, but will be thinking about you. If it is any consolation, I have known two people who have had the surgery recently and they did great!

    I am not a candidate for ADR....my bone quality is too poor. i am being advised to do hip bone. but i have another friend who did a new medical trial with a new kind of moveable ADR and he is doing great too.

    these responses have given me a lot to think about. today i have packed for family vacation and it has just killed my neck and worn me out. When I think of how just that wears me out and the fact that my hubby says that pain has changed my personality then i think i should do it. Plus, my child is only four and a half and she wants me to play with her and i have to be so cautious all the time not to aggravate everything....

    i will check in on you when we get back.....it will be right before your surgery! thanks for all your support and information!
  • I just had the surgery 3 weeks ago. They used a "peek" on me with my own bone shavings from the area during surgery. I had plenty of spurs to use. They pack your bone into a plastic container and put that between your vertebrae. It is common now. It's a great way to use your own bone without going thru the pain and risk of the hip surgery.
  • HualaniHualani Big Ilsland HawaiiPosts: 57
    Wow, can many of us relate to this difficult decision. And clarification- you know we cant offer medical advice.
    I dont think any normal human being wants to go in for surgery- if that is any small consolation. technique is so advanced today, many are outpatient, home same day, not even a colllar. its less risky than 10 years ago, but certainly everyone I've spoken to has advised that sooner rather than later is smarter. every individual has a different situation, albeit it makes sense to me if something can heal on its own, after 6 months, if not better, probably wont get better. 
    that being said- Igo in 5 days. from today,and the same surgeon who operated on my lower back 10 years ago.
    Im trying to be in the best possible shape before surgery to foster fusion and healing.  I will be glad when this is behind me,   that said, I know i personally will be better after than I am now. I hope the same goes for you.
    Cheers, keep us in the conversation please.
    Life is too short to be serious all the time.
    so if you cant laugh at yourself, contact me
    I'll laugh at you. B)
  • ATXPAATXP TexasPosts: 2
    I had C 5,6,7 performed 3 1/2 years ago.  Had been in constant pain for years.  Best thing that I ever did.  woke up in recovery, pain free, ate dinner and discharged the next morning!  No regrets!!!

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