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Is it worth it to have ACDF with only a 6-7 (daily) level of pain and numbness?

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:34 AM in Back Surgery and Neck Surgery
I was hoping someone could help. I am so confused about what to do and talking to people who have been through it really helps. My pain is only a 6-7, but it is every day and its been 5 months straight (15 years on and off). I also have arm numbness in one (and sometimes both) arms. I have tried all conservative treatments. Both doctors (neurosurgeons) I went to say it is up to me if I want to have a two level ACDF or I can just live with the pain. But I am only 39 and dont want to live with this forever. Heck, it is only 5 months and I am going crazy.

Since its a risky surgery and has a long recovery, I dont know if I should hold off and risk permanent damage, or just deal with the pain. The fact that it progressed to daily when it used to only act up once every few months makes me think it has gotten worse and will continue to do so. I see most people on here only do the surgery when the pain is unbearable. Has anyone done the acdf with dull constant pain and been glad they did. In other words, was the surgery and recovery worth it? Thanks to any with any insight and hope you all feel well today. (I now pray for everyone on here- pain absolutely stinks)




  • I'm glad that you are taking surgery so seriously.

    That said, only you can decide for yourself.

    I personnaly avoided surgery as long as possible. I could have handled my pain levels, I have a high tolerance.

    What made me say yes was:

    1- Confirmation that the discs were causing the pain (discogram)

    2- There were signs of permanent nerve damage(I was showing symptoms of CES, very icky scary business that was!!)

    When I said yes to surgery, I had to decide that life in a wheelchair was better than what I was living with. I refused to consider death as a possible outcome, but honestly, it's always a risk.

    I DID have complications, but you know what - no matter the future, I know that I made the best decision I could have made at that time. My nerve pains seems to have been helped tremendously and I've not had even 1 instance of CES post-surgery, not even the tiniest barest of tinkles (sorry if that's too much information - CES is Caudal Equina - loss of bowel control.

  • I had C5/6 fusion 1/08 and had a good outcome. I was losing use of my left hand, falling all the time when I turned my head to the right (broke 2 bones from the falls), only comfortable when laying down, etc. I had a nerve that "woke up" after surgery that caused a good deal of pain after surgery, but after that healed up in about 2 months. As long as I don't do activities that aggravate my neck, such as bending my head down and doing a lot of sweeping of my floors, then at times I forget I even had it done.

    Hope this helps. Best wishes to you...

  • Have you asked your doctor if you are a candidate for artificial disc replacement (ADR), also sometimes called "Total Disc Replacement" or "TDR". Cervical ADR is fairly new in the US, so most surgeons do not have experience doing it (A surgeon who doesn't do ADR will probably not even mention ADR as an option.) Some are not doing ADR it because the long-term results are not yet known. Or so they say. Surgeons in Europe have been performing ADR for years. However, I do not know if two two-level ADR is even an option. It might not be an approved use of artificial discs.

    In April 2008 I had a laminectomy/discectomy/foraminotomy for a herniated disc at C5/C6. Recovering from that was no fun because the surgery was performed from the back of my neck. The surgery relieved most of the symptoms I was having, but I kept waking up with my right hand numb. I complained about this for months before my surgeon finally decided to order an MRI. He also had me take test to rule-out the possibility of thoracic outlet syndrome. (He maintained the numbness was due to swelling and I just needed to give it time to heal.) The MRI showed no significant problems, so he sent me to a neurologist, who examined me and had me do an EMG (which showed no problems). The prescribed an anti-inflammatory medication and physical therapy. (Incidentally, from my experience, I know MRI often miss disc herniations. I think it is because most MRIs are performed while you are lying flat on your back, which means the pictures they get do not show a true representation of what's going on in your back while you are standing or sitting.) PT did not help me (maybe it would have if I had stuck with it longer or tried harder), so the neurologist finally ordered a myelogram, which showed the disc herniation. So, my neurosurgeon reluctantly recommended fusion. He did not perform fusion, so he referred me to another surgeon. In February of this year I had ACDF at C5/C6. (After reading about all the possible complications, it made me so worried I almost canceled the surgery.) I had a very experienced surgeon, and I came through the surgery without any complications. However, the surgery only gave me temporary relief. Less than six months after the fusion I had symptoms of a herniation at C6/C7. A recent MRI confirmed it. Maybe if I had had ADR instead of fusion less stress would have been placed on C6/C7 and it would not have herniated. (I assume you know about "adjacent disc disease".)

    Incidentally, my experience is that orthopedic surgeons are more inclined to do fusions than are neurosurgeons. More than one person advised me to go to a neurosurgeon instead of an orthopedic surgeon, but I had read that what's important is that you see a surgeon who specializes in spine surgery. The surgeon who performed my surgery was an orthopedic surgeon. I sometimes wonder if my results would have been better if I had gone to a neurosurgeon instead of an orthopedic surgeon. There's no way of knowing.

    I personally regret having a fusion. If I had known how it would affect my neck flexibility, and that it would cause another disc to deteriorate so quickly, I would have tried physical therapy longer. More then one surgeon had told me that with a single level fusion I probably would not notice any loss of flexibility in my neck, but I did notice it.

    If you do decide to have surgery, make sure you choose an experienced surgeon who has a good reputation. Make sure there have not been any complaints against the surgeon. Ask how how many fusions he has performed, and what the rate of failure is. Ask if he has any post-ACDF patients who might be willing to talk with you about their experience. I was very anxious about the idea of having surgery, so my surgeon offered (I did not ask) to let me speak with a couple of patients he had operated on. One of them happened to be in the office for a follow-up visit. The other was a girl who worked at the same clinic. They were both very satisfied with their outcome.) Ask other doctors you trust who they would go to if they needed neck surgery. Also, get multiple medical opinions.

    Good luck to you.
  • Hi guys,
    Believe it or not, I do not even know what myelopathy is, so I dont know if I have it. What I do know is that in the past years, I only had muscle spasms as a cause of my protruding c5-6 & c6-7 and that was only once in a while. But the last five months, not only have the spasms/pain progressed to daily, but I have daily arm numbness now that I only orginally had five months ago once in a while. I dont know if that is enough to prompt this major surgery. But every day I wake up, I have extreme anxiety about not knowing what to do and b/c of my arms being so tingly. It really bothers me and I feel I may be hurting myself with my arms this numb.
  • They are recommending two level ACDF with fusion, but only as a last resort. When is that last resort? I have to take xanax daily just to get by this anxiety this uncertainty has brought on and I hate taking pills.
  • Have you discussed permanent nerve damage with either of your docs? It is "easier" to decide to press forward with surgery or not if we suffer pain for a long period of time. Where we really need the doc's input is when it comes to knowing if there's the risk of permanent nerve damage or not.

    Anxiety is a normal part of this entire process. The key is, to not let it be the focus of your entire day. Usually when I have a big decision to make, I will make a list of the pros and cons.

  • I thought I might share my reasons for having surgery and my story in case it is helpful. I was facing a possible bi-level ACDF C5-7 as I had pinched nerves at both C5/6 and C6/7 (although I did not know about the C6/7 problem until I saw an NS six months into it all). I had terrible pain in my left shoulder and arm (cervicular radiculopathy) for about 5 months, and had tried just about every conservative treatment including traction, acupuncture, chiro, PT, oral steroids, massive anti-inflammatories, Lyrica, hydrocodone, massage etc, and three cortizone shots in the neck at C5/6.

    We assumed it was my C5/6, as over the past six years I had had previous probs that cleared up within 6 weeks with conservative treatments , and the MRI showed it was now moderately herniated (7.5mm)with bone spurs. But my symptoms did not correlate clearly with the MRI.

    While my pain level decreased significantly in the 6th month (2-4 vs 6-8), I was frustrated by the lack of a clear diagnosis from my ortho. I decided to see the neurosurgeon who suspected a second problem at C6/7 and discovered that although the pain had receded, I now had definite weakness in my left arm which had not been there in April when I first saw the ortho (there were several other docs before him who had not seen weakness either). In fact my pain level might have gone down in June because a)the nerve was going dead after 6 months of being pinched, b)I started getting myofascial/deep tissue massage, or c) I am a teacher and school was out so I was less stressed and could lay on the couch all day.

    But the weakness was the indicator of impending nerve damage and indeed it got weaker rapidly over the next few weeks. He said that given the sudden weakness, surgery would be necessary, but wanted to narrow down the problem more before saying what to do precisely (he mentioned ADR or bi-level fusion at first, but my insurance, like most US carriers, denied ADR). Following more CT scans and a myelogram (yuck) we saw that while I did have some moderate impingement of the nerve and spinal column at C5/6, the nerve was almost completely pinched at C6/7, and there was definitely going to be permanent damage if we didn't act.

    Believing that the weakness (the most serious problem) was caused by the pinched nerve at C6/7, my NS offered me a less invasive procedure at C6/7, a posterior foraminotomy, as an alternative to fusion. He did say that there was still chance that I would need fusion at 5/6 down the road but that he believed the less invasive option (which he specialized in) would give me the relief I needed now and avert the damage at C6/7, and that maybe down the road I could get ADR approved and could nurse 5/6 until then.

    I had my surgery on July 13 and instantly after surgery began to see strength come back (it was absolutely amazing). My pain has been very low and sporadic, and while it is coming back a little more at three weeks post-op, it is still in the 2-3 range and it may be simply the nerve waking up again so could settle eventually in a few months.

    The weakness and potential for nerve damage were the main indicators for surgery in my case, though severe pain lasting over 3 months is also a reason to consider surgery. Fusion is not a walk in the park and it is not reversible, so I would certainly be sure it is your only option before you do it. But on the other hand I would not avoid it if permanent nerve damage is imminent and your neuro or ortho say it is your only choice. Read the other threads on this site and you will hear many positive results from ACDF as well as bad stories like CM's above. A good thread to start with is "Is anyone getting better?"

    So in short, pain is not always the main indicator for surgery but is is a factor in the decision. At the time of my surgery I had less pain, but the nerve was still being pinched and getting damaged so I believe I made the right decision. The fact that the weakness went away so quickly makes me think my NS made the right one too. He did say, however, that not many spine docs do foraminotomies, so if it is an option for you, be sure you have a surgeon with lots of experience in the procedure and a good success rate with it.

    Anyway, I empathize completely with your situation, and hope that whatever you decide you can find some relief. And be reassured that other people have, so it is possible to feel better!

  • Thanks so much for your reply. It does help, as I am very confused right now. Currently, my right arm still geels funny, but the neurosurgeon said the discs are only touching the spinal fluid and not the spinal cord, so surgery wouldnt alleviate the problem. I think my problem is that when my arm gets numb and tingly, I get scared and it causes alot of anxiety and that makes the tingling get worse. As a matter of fact, when I lay down now in bed, both of my arms and legs gets very numb and tingly and I have read many people with anxiety get that. I claim anxiety is to blame b/c I have lost 15 pounds (wasnt heavy before) from this and also have that very edgy feeling going on all day. I had anxiety a few years back after a number of miscarriages and still havent solved the problem, so it is problem a conglomerate of everything now. Anyway, all doctors said (3 opinions) that I should have nerve damage signs before doing a surgery like this and not just numbness. They said I do not have any muscle weakness and when I do, then should come back and consider surgery. I hope it is all in my head and I dont seriously have a disc problem. I just started taking anti-depressants to get rid of this horrible anxiety and hopefully, when they kick in, I can stop obssessing over my arm and the way it feels. Anyway, thanks for writing and Im glad youre doing well. Maria
  • I thought I'd post in answer to your beginning post, as well. I had my ACDF at C5-6,6-7 done on July 13.

    15 years ago, I was hit from behind while waiting to turn left, and driven into another car stopped in front of me. I had whiplash, went through massage and PT and it was left at that.

    I had been diagnosed with Fibromyalgia after going through surgeries for carpal tunnel (bilateral) and right ring trigger finger release. I have been unable to work since 2003 due to the fibro pain being so bad.

    I decided earlier this year to go to a chiropractor to help ease some of the lower back pain and sciatica that I get every couple months. This chiropractor looked at my x-rays and decided my neck was in worse shape than the lower back, and began to adjust me. She was going to do my entire spine, starting top to bottom. I had to make her stop after she adjusted my neck, as the pain was nearly unbearable. By that evening I couldn't move my right arm as the pain was so severe.

    Next day I saw my PCP and started the process (MRI, neurosurgeon, pain doc, etc). I found that there were 2 discs bulging and narrowing of the space that the nerves went through.

    The neurosurgeon told me I could wait for surgery, but that if I were to be in a car accident, or have a fall, I would more than likely injure my spinal cord. I decided to go ahead with the surgery, and 2 months from the chiropractor visit I had the ACDF done.

    I'm still early in recovery, but immediately I had relief from the neck pain, and my worst "fibro" spot has gone from sharp and agonizing to dull and infrequent. I saw my neurosurgeon yesterday, and my rheumatologist today. The rheumy told me that since my worst spot is showing improvement, this surgery may have "fixed" me. My fibromyalgia may not be a true fibromyalgia, but rather radiant pain from my neck being out of place for so many years. I'm very excited about this news, as I may well end up being pain free for the first time in 15 years, a miracle!

    Each person has to decide for themselves if surgery is the right option for them to take. In my case, my only regret is that I didn't find this problem years ago and have it done sooner! I am not having a lot of pain from the surgery, and my NS is releasing me to try to go to work part time in the next month.

    I do wish you well, Maria, and that you will make the right decision for you. Hoping that whatever you decide, you will find some relief from this pain!
  • Maria: that's good news that you don't have weakness or nerve damage, but sad news that you still have pain and numbness as they are very scary for anyone, especially over a long period. I had more pain or tingling when I lay down in certain positions (in fact I still do even after surgery) so I slept on the couch for the first three months to avoid them in the beginning. When I slept in my bed at four months in, it was a small victory. I am glad to hear you are getting your anxiety treated, but be sure to take care of the pain too. Do you have a good pain contol doctor? He can help with medications that won't interact with the anti-depressants.

    I also highly recomend myofascial release/deep tissue massage. I was skeptical it could do much for me but it definitely loosened up the muscles and may (see earlier post) have lessened my pain. All I know is that I did it about 2-3 times a week for three weeks and it really helped me to relax. It was a little pricey to do--$65-80 per session plus tip at a spa--but you may be able to get it at a chiro for cheaper and it was definitely worth it.

    I know how desperate I felt at times, wondering if the pain would ever stop. I got a lot of comfort from the people on this website, and have great admiration for people who deal with pain long term. Hang in there and I hope you will be able to get relief soon.
  • kkuylen, you wrote:
    "Currently, my right arm still feels funny, but the neurosurgeon said the discs are only touching the spinal fluid and not the spinal cord, so surgery wouldn't alleviate the problem. I think my problem is that when my arm gets numb and tingly, I get scared and it causes a lot of anxiety and that makes the tingling get worse."

    I can understand the part about anxiety making your symptoms worse, but "only touching the spinal fluid"??? I'm no doctor, so please forgive my ignorance, but if the discs are "only touching the spinal fluid", then why are you having numbness and tingling? If anyone understands that, please explain it for me. Thanks.
  • I just had C4 thru C7 fused 11 days ago. My neurologist saw my reluctance and said I could do the posterior forimanotomy but it wouldn't fix my problem. I too have had this issue for over 15 years and had a few flare ups each year and then about 4 months ago the pain stayed with me. I was able to bring it down to a 4/5 in pain but knew this was not going to stop and my neck was getting worse. I only had C7 messed up before now 4 discs were failing and I had no fusion. I knew I had to do it. You may only need the posterior forminanotomy. If I'd done that when I only had one disc messed up maybe I wouldn't be sitting here with 3 levels done. So far I'm healing well and doing great. I'm glad I took care of it finally.
  • Hi CM. In response to your post, I am assuming (and wont know until I treat this with meds) that my tingling must be from anxiety.

    Let me explain... For years, I have had muscle spasms on my left side between my shoulder blades. The last few years as I was going through a number of infertility treatments, surgeries and miscarriages, the pain starting acting up more often. About five months ago, after my final loss and realizing we would have to adopt, the spasm was everyday and dint go away. Well, the MRI showed bulging discs, but again, like the dr. said, it wasnt hitting the nerve. I had this pain for months, and had a tiny bit of numbness the first few days, but then the pain just moved around from side to side.

    Just recently, after thinking I needed surgery and scaring myself to death about it, I developed the numbness in my right arm more permanently and now wake up with the shakes and severe anxiety. This has stayed even after being told I didnt need surgery, but honestly, I think (and hope) it is the buildup of the last 5 years and the fact that I needed this major surgery. I know exactly what anxiety feels like b/c I had it about 2 years ago, and took lexapro (an AD- anti depressant) for about 6 months, got off and was fine (or so I thought).

    Anyway, I am hoping it is just a coincidence that my discs are protruding and I have this arm pain. Obviously, I can be wrong. But worse than the numbness/is the anxiousness I now have and I have to treat that first. A few drs I have been to have said protruding discs are very common, they just dont cause pain in everyone all the time. If I take the AD and it doesnt get better, I will have to re-address it, even though they are saying dont have surgery until I actually get worse. I am also doing an EMG tomorrow to see if there is any damage.

    Sorry if that was too confusing. Maria
  • My story is a lot like Kat_38. I was hit from behind over 20 years ago but never gave it much thought in later years. That hit apparently crunched my disc and over time bone grew in, bone spurs developed and I have moderate-severe "thecal sac formation" - you see the spinal cord starting to deform like an oval.

    BUT - in last 3 months got increase in shoulder pain, weakness in left arm (noticed lifting weights) and tingling down arm and back plus many other classic, progresssive symptoms. MRI is black and white obvious - you can even see the line/shadow on my tiny avatar pic. What decided me on surgery was:
    1)Progressing weakness and increasing..."ache" in back, arms, etc.
    2)Apparent nerve damage per dr. - and likely that the damage will get worse and high risk of serious damage due to injury
    3)Need for surgery at some point 100% - do it now while in good shape, chance for recovery is good, and before serious pain sets in. More pain before = longer recovery (so I'm told as a rule of thumb)

    You do not need to be suffering to have surgery...but if the radiographic presentation is scary, you have progressing symptoms, and are in shape for surgery - then surgery is a likely candidate. Injections, etc. just don't fix things that are mechanical - like bone / bone spurs.
  • This is a very informative thread.
    I too have been struggling with the decision of whether or not to have surgery and finally decided to do it. I consider myself to be highly tolerant of pain, especially nagging pain. As a matter of fact, it took me a year and a half of having a constant 'kink in my neck' to finally break down and see a Dr. about it. I tried Chiropractic care which made me feel worse and I always left the office bawling in more pain than I was in before the adjustment. I just thought I had wait it out, it would get better with time. It never did. My pain began to spread to my left shoulder & arm in addition to the constant 'kink'. I went to an Orthopedic Dr. who was just awful. He only did X-rays, injected both sides of my neck, my shoulder and my left rotator cuff with cortizone 3 or 4 times in a 4 month period with not much relief. He wasn't very nice and I felt like I was annoying him because I wasn't understanding what was going on and I wasn't receiving any relief from my pain. I finally changed to a different Orthopedic Dr. who we had gone sand duning with us on occasion with our friends(I didn't realize he specialized in that field.) . He immediately sent me in for an MRI which showed me to have very similar issues as FlyingScot. I had a slight bulging disk in C6-C7 and CDDD with a bone spur in C5-C6. He sent me to a pain center to receive a series of 3 spinal injections which helped after the second one, so I never did the 3rd. This was about October, 2008. Flash forward to New Years Eve and we were at the dunes, taking it easy riding slowly back to camp when we hit a bump just right. I heard a 'crunch', felt extreme heat wash down my Rt. shoulder & arm and some pain on my rt. shoulder blade. The next night, same thing, nice and easy heading back to camp and hit a bump just right again and the same thing happened but this time, I broke out hysterically crying from the extreme pain in my Rt. neck & shoulder. (I made a post on here when it happened, but no one could relate to my 'incident' and so I didn't receive any response.)Believe it or not, I didn't go back to the Dr. for 5 months after that only because I assumed it was just my spine issue reminding me that it was there. Well I finally went back because my pain was in full force again but worse than before. I can't look up, down or to the right without feeling a heavy, painful 'tugging' of my muscles which go from my neck to the middle of my shoulder blades and down my shoulders. Now my right arm and shoulder hurt in addition the the left side. I feel weakness in both of my shoulders and upper arms and they tire very easily. I used to be a fairly strong woman, not anymore. I occasionally wake up in the middle of the night with my arms and fingers asleep or tingling without being in any 'awkward' sleeping position. I notice I drop things and stumble more often but only on occasion. I am tired all the time from the constant muscle spasms which have become a daily occurance. I just received another 2 out of 3 injections which didn't help in the least this time, in fact they made me gain about 10 lbs. :0\ , so I refuse to get the last one. I went back to my Orthopedic Dr. who stated that because I have a bone spur which had gotten worse (the duning incident) in such a short time that the only way the pain was going to be 'fixed' was with surgery. He then sent me to his personal Neurosurgeon who performed the same surgery on his neck 7 yrs. ago.
    After having to wait to see if the NS would accept my case, I finally had my first appt. last week. In the 8 wks. that I had to wait for this appt. I did a lot of thinking and paid more attention to my issue and how it was affecting my life and how I was living. I realized that I wasn't. I'm not able to do the things I love, like tending to my vegetable garden, dune, 4-wheel, golf, hike or sew not to mention the necessary everyday chores like laundry, taking out the garbage and moving the furniture to vacuum under, etc. I find myself upset and frustrated because I am normally a very active person and we are a very active family. I am always tired, grumpy, in pain and reluctant to do anything in fear of how bad the repercussions will be later.
    This is only going to get worse for me as time goes on. For the same reasons as FlyingScot states, I am going to go ahead with this surgery before it gets any worse in hopes I will heal quicker. My NS gives me a 90% chance of a full recovery in about 3 months. He would give me 95% but by looking at my MRI films, he can't explain the left sided arm/shoulder pain.
    I'm scared, but I weighed the pros and cons and just like Saltzworks, I have decided that going ahead with the surgery is worth the chance I'm willing to take even it means being in a wheelchair for the rest of my life. (knock on wood.)I want to live again. I owe it to myself and my family.
    Good luck with your quest in making the decision whether to have surgery or not, Maria.
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