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2 level ACDF or not?

Hi All,

As I imagine most people do, I came across this site having searched for information and advice on whether or not to have ACDF surgery, as here in the UK they just tell you it's an option and let you make your own mind up.

I would welcome any thoughts as to whether to go for it based on my history below:

I'm 34 (almost 35) and first had neck/ arm issues about 12 years ago. Finally saw a Neurosurgeon who grudgingly did an MRI but said he would eat his hat if there was anything wrong. Turns out I had a bulging disc - advice was to live wth it. I did, with a pretty good recovery over time, to just one spot on my inner right forearm that always felt a bit numb.

Fast forward to November 2011 - for a couple of weeks I had an ache in my right shoulder blade, like I'd been in a draught. Over a couple of days it then went from a slight ache to excruciating pain in my right upper arm, neck and shoulder blade, loss of movement, pins and needles and numbness. There was also a shock type sensation down my arm if I tried to drop my chin.
I was refered to an ortho surgeon who took x-rays, and ordered an MRI. I had issues at C4/5 and 5/6, with one bulge and one prolapse. I had 2.5 months off work, PT twice a week, and the arm gradually came back to something approximating normality.

A phased return to (desk) work, occupational health assessment of my work station, less air and train travel and I was just about doing okay over the summer.

September 2012 BOTH arms started giving me grief, and over the time since the left has overtaken the right in terms of weakness, pins and needles etc. and now they are both about the same. I have the shock sensation down both arms, one reflex in my left arm is sometimes present sometimes not, and my right arm is "significantly weakened". My handwriting is now dreadful, and anything I have to do with an extended arm just won't happen. I also get a lot of headaches, from the back of my skull over into my eye socket.

I have tried lifestyle changes - I no longer wear high heels as I feel wobbly on them, I have changed my car from a sporty low 2 seater to a standard hatchback, I try to avoid anything that involves sitting in one position for too long etc.

I have had weekly physio/ traction/ acupuncture or a combination therof for the last 10 months, and the issues remain, and have got more constant/ worse if anything.
(I have an awesome physio who is fast turning into a friend - I see her more often than most of them!)

I still drive (short distances) and work, some days are better than others, the pain is medium to medium/ low level most of the time, although the sensory changes, stiffness and weakness are a nightmare, as is the constant tiredness. I have also lost about 50% of my sideways neck movement, but how much of that is due to my neck muscles being in overdrive we're not sure.
Travelling by plane or train (which is an essential part of my job, every couple of months) is a nightmare, and I know it will put me out of action for a good few days on my return.

I try not to take pain meds unless absolutely necessary, as they don't do much to help, and affect my ability to drive and work. I have tried (in no particular order and in various combinations) amitriptyline, valium, dihydracodine, codydramol, ibruprofen and tramadol. Most just put me on the ceiling!

I have had 2 more recent MRIs, in Dec 2012 and July 2013, and seen 4 different specialists.

After the first MRI I was told I would need a single level decompression surgery "at some point".
After my last MRI (7 months on) I am told by two surgeons that the option is 2 level ACDF surgery, 4/5 and 5/6. One surgeon recommended bone from my hip and the other artifical bone, whatever that is!!

4/5 is not bad enough on it's own to do anything surgical, but 5/6 is, and they both said they would do both to be safe. I have bone spurs at 5/6, and the nerve exit pathways are extremely narrow on both sides. There is a narrowing of the spinal canal, but no cord impingement (yet?).

It is up to me to choose whether or not to have surgery - thoughts/ advice greatly appreciated...

Thanks in advance



  • LizLiz Posts: 7,832
    edited 08/12/2013 - 3:15 AM
    I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and continues to grow.
    Here are just some of the highlights:

    - Detailed medical libraries of Articles and Videos that address almost every Spinal Conditions and Treatment

    - The Wellness section contains articles, tips and videos to help patients after surgery and also to help people avoid surgery.

    - Under the Resource tab, there is a section Doctor Advice Health Center which can be invaluable.

    - As a bonus, Spine-Health provides these patient forums. Here is where you can meet thousands of other people who understand and can relate to your situation. You will soon become part of the Spiney family who provide comfort and the advantages of a Support System. You are now part of this family that is approximately 20,600 International members and growing daily.

    - It is very important to understand the Forum Rules to make sure all of your posts do not violate any of the rules.

    - As a new member, it is helpful to understand the 'makeup' of these forums, how to make posts, tips on adding images and much more. You should read Forum FAQ

    Here are some you should take a look at:
    Read before you post
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    All of this will help make your threads better and improve the times and quality of responses you will receive.

    If you have any questions or need assistance, you can use the Private Message facility to contact any one of the Moderators on my team:






    We cannot give you advice but only give personal experiences which may help you while considering your options

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • chrelseycchrelsey Posts: 90
    edited 08/12/2013 - 4:01 AM
    I am so sorry to hear of all that you have gone through on your continuing journey to find pain relief. The decision on whether or not to have surgery is a hard one, and ultimately it is one that can only be made by you. However, I can share my experience and what prompted me to choose surgery.

    I had a laminectomy in 2010, and am scheduled for an ACDF next Monday (the 19th). So many things can factor into the decision of whether or not to have surgery - and even though my neurosurgeon and neurologist have both said that the ACDF was necessary - I could have chosen to put it off. That wouldn't have been a wise choice, but it was a choice nonetheless. The main thing that prompted me to get it done now was quality of life. The pain, leg and arm numbness, tingling, headaches, etc., intrude upon every waking moment of my day, and to be quite honest, it effects my ability to enjoy - or sometimes to even participate in - everyday normal activities. When I look down the road ten, five, or even one year from now, I don't want to be in the same place I am right now - still dealing with pain and struggling just to get through the day, or to be even worse because I didn't take care of it earlier.

    All of our situations are uniquely different, and the path we take to recovery - whether through pain management or surgery - is ultimately a decision that all of us here must make. I hope that you will find this forum to be as encouraging and helpful as I have, and wish you the best as you move forward towards pain relief in the manner that is best for you!

  • jellyhalljjellyhall Posts: 4,373
    edited 08/12/2013 - 5:08 AM
    I am in the UK too.
    I do understand how hard it can be to decide whether to go ahead with spinal surgery or not.

    I have had a lumbar laminectomy and fusion and more recently, a 2 level ACDF.
    I didn't suffer nearly so much pain before my neck fusion as I did before my lumbar fusion.

    The reason that I had my neck fusion was because I had compression of my cord. I was told that if I didn't have surgery I was at risk if I was in an accident or even if I had a fall. Worse case I could end up paralysed or could just have very weak arms and legs. Before my surgery I was left for over 2 years while they 'watched and waited'. The consultant said that I would need surgery eventually but he thought that we could wait 2 or 3 years. His registrars, at my 6 month appointments, would say that I needed to have the surgery as I had signs of myelopathy, but they would go to speak to him and come back and say he said we would wait another 6 months. I never found out what he was waiting for. The various articles that I read indicated that surgery should be done within 12 months of the onset of symptoms to have the best chance of success. Eventually I got another opinion, and that consultant felt that we should get on and do the surgery as things 'were very tight on my cord'. I had my surgery 9 months ago and still have most of my symptoms. My surgeon has said that I could still get improvement until 12 months after my surgery, but at that point that is probably how I will stay. Now I wonder if I was left for too long and have permanent damage. I do know that I have problems with the two discs below those fused, so that could be what is causing my problems. My surgeon only fused the two worst levels that were compressing my cord because he said there was a much higher chance of me not fusing if he did more than the two levels. He said he would have done four levels if I had been younger. (I am 57)

    Now your case is not the same. You don't have impingement of your cord. I think I would want to know what the chances of permanent nerve damage are if you continue to wait. If your nerve root openings are 'extremely narrow on both sides' they I wonder if this is a possibility.

    It does sound like your life is being limited by your symptoms. If you are going to need to have surgery at some point, then I would ask myself what the advantages to waiting are. If you have been offered this surgery on the NHS then I think that you really need it. They don't offer spinal surgery, particularly neck surgery, unless it is really needed.

    One question we asked my second opinion surgeon was that if I was going to need the surgery at some point, and he had told us that it was being done to get the pressure off my cord and I may be left with my symptoms, then wasn't it better to get on and do it so my symptoms were not so bad. He said 'absolutely'.

    I hope that you will find talking to others with neck problems and reading all the excellent information on this site will help you to make your decision. :-)

  • Thanks to Liz for the forum rules, and to Becky and Jellyhall for the helpful insights.

    It is incredibly helpful to hear other people's thoughts, as I do tend to put my head in the sand a bit about my symptoms, which I guess is a fairly common coping mechanism.

    Reading my post back, I realise that this is affecting my quality of life a lot more than I usually allow myself to acknowledge.

    Thanks Jellyhall for the UK perspective, especially about if it's being offered on the NHS, which it is, with a 6 month wait. I have limited BUPA coverage with work, so *might* be able to go that route and get it done quicker; if I decide to go for it I will investigate. Either way I would be treated at Oswestry, about an hour from home.

    I think in my heart of hearts I know I need to get this sorted surgically, but reading lots of the posts on here about the issues and horrendous pain many people have faced I feel like a bit of a fraud as my pain isn't that bad... I suppose I need to get my head around the fact that pain isn't the only indicator I should be worried about.

    Thanks again for your support.

  • Your comment, "pain isn't the only indicator" really stuck home with me. Although I'm having ACDF surgery next week, on most days I would tell you that my back pain WAY exceeds my neck pain. Oh, I have days when my neck hurts, and my shoulders feel bruised to the touch, but constant, unrelenting neck pain is not a huge issue for me (although I do have almost daily headaches). What IS a huge issue is the numbness/tingling in my tailbone area, my hip and my leg, and the tingling in my arms and hands. My surgeon has been closely monitoring my cervical MRI's and myelograms for several years now, and after the latest onset of symptoms (tailbone area numbness/tingling), my MRI indicated a significant change in cord compression. He made the comment that it is only going to get worse from here.

    All of that to say, you're right - pain is not the only indicator! Our body has numerous ways to let us know that something is wrong, and oftentimes waiting until it actually hurts could mean waiting too late!

    Just my thoughts!


  • Julia, I know that feeling of feeling a bit of a fraud as the pain isn't that bad.
    I felt like that because before my lumbar fusion I was in awful pain that would have me in tears some days and it was meaning I couldn't stand for more than about 5 minutes before needing to sit down, and I couldn't walk for more than about 10 minutes before searching for a seat, or even lying down to relieve the pain.

    Then with my neck my pain was not nearly so bad. I was quite surprised when they said that my cord was being compressed, but then when I read about it, it is not unusual for cord compression to not really be painful. I think that some of my symptoms are coming from the nerve roots being compressed and had an EMG test that showed that I had neurogenic changes in both arms in the muscles fed by several of the nerves.

    Perhaps you can ask your surgeon what the chance would be of having permanent nerve damage if you left it and waited. I wonder if there is a symptom that would indicate that it is time to go ahead and have the surgery because the nerve compression is getting critical.

    I feel that I am glad that I went ahead with both of my surgeries. With my lumbar fusion I wish I had gone for it sooner and saved myself so much pain. With my neck fusion, I did wait for over 2 years and now I wonder if I still have these symptoms because I waited too long. I can never be sure, but did wonder even before my surgery, how many of this consultant's patients were left with permanent nerve damage due to waiting so long.

    Probably, even the spinal surgeons don't know that answer, but it would be interesting to hear what they would say.

    Good luck in making your decision Julia. :-)
  • cynmarccynmar Texas, USAPosts: 65
    My Dr told me yesterday that he recommends ACDF surgery @ 4 levels. This makes me a little anxious, especially after reading your comments, jellyhall. I am 58 years old and confused about all of this. I've been dealing with Chronic Pain for 17 years. It has also been recommended that I have laser surgery on the lumbar area. My pain is all on the right side due to two pinched nerves caused by degenerative Disc Disease & Herniation/Sublaxation. I have not scheduled surgery yet as I would like to research first and hear about others successful or nonsuccessful stories. Becky, good luck to you on the 19th & I'll be looking for your report. Julia, looks like you and I are in decision mode. Let us know how it goes. I look forward to learning more. My follow-up visit is in 6 weeks so guess I will decide by then. Take care all....Cynthia
    Cervical foraminotomy 12/20/13 (herniated disc) C5-C6
    Lumbar microdisectomy 02/28/14 (herniated disc) L4-L5
    Mild Disc Bulge L5-S1
    Moderate Facet Arthrosis L4-L-5 w/gr1 Anterlolisthesis
    Spondylosis w/gr 1 Retrolisthesis L3-L-4
    Failed Back Surgery
  • jellyhalljjellyhall Posts: 4,373
    edited 08/14/2013 - 7:02 AM

    I suggest that you make up a list of things that you want to ask at your appointment in 6 weeks.
    I think at the top of my list (if I had one) would be about the chance of failed fusion (pseudoarthrosis) when so many levels are done. I am sure that there are things that can be done to reduce that risk.

    It may be that your problems do need to be treated by fusion. What is your diagnosis? Definately something to discuss with your doctor though, so that you can feel confident in your decision.

    Also, is it possible for you to get another opinion? I had several. Hearing other doctors suggest the same treatment really does help to know that their proposed surgical treatment really is needed.

    This is a great place to do your research Cynthia. There are some excellent articles written my spinal experts and you can get other patient's experiences here on the forum. Good luck in your decision making. :-)

  • cynmarccynmar Texas, USAPosts: 65
    edited 08/14/2013 - 9:12 AM
    Definately getting another opinion and making a list. I just spoke with someone that had same surgery by the same Dr I saw and he had a horror story. Think I'll check around and try Accupunture in the meantime. Their diagnosis was degenerative disc disease, herniated disc & sublaxation. I am scheduled to see the same Dr that referred me to this surgeon to try shots, but thinking about cancelling and getting away from this group. Not comfortable. Right now I'm trying to work fulltime and manage this pain. Out of sick leave and vacation. I do take Cymbalta which helps, but deal with breakthrough pain about this time of day so the rest of my day is shot. Cymbalta is not covered under insurance & is very expensive. Thanks for your suggestions & I'll keep searching.
    Cervical foraminotomy 12/20/13 (herniated disc) C5-C6
    Lumbar microdisectomy 02/28/14 (herniated disc) L4-L5
    Mild Disc Bulge L5-S1
    Moderate Facet Arthrosis L4-L-5 w/gr1 Anterlolisthesis
    Spondylosis w/gr 1 Retrolisthesis L3-L-4
    Failed Back Surgery
  • Becky, thinking of you today... be strong, and let us know how it all went when you feel up to it.

    Cynthia, acupunture works for me, up to a point. My physiotherapist is also a trained acupuncturist, so we do diferent treatments every time I see her based on my symptoms that day. Acupuncture gives me almost instant relief from muscle spasms, and they stay away for a little while after. There are also some awesome points along my arm (wrist, elbow etc.) that go some way to ease my neck pain when it is particularly bad, but don't have such long lasting effects. Even the temporary relief is definitely a positive for me.

    Despite the temporary relief from treatments like acupuncture, I have (gulp) decided to go with surgery. Jellyhall and others, your comments and shared experiences have been extremely helpful, thank you.

    Bizarrely, in the week since my original post my pain levels and discomfort have increased significantly, and I am also acknowledging the impact all this is having on my life more. After several heart to hearts with loved ones, I have called my specialist to give them the go ahead, and am just waiting for a date.

    I am lucky in that my workplace medical insurance will cover the surgery, so hopefully I shouldn't have too long to wait (or chicken out!)

    I will keep you informed on progress, and hope to keep reading about everyone else's experiences in the meantime...

    Thanks again to everyone,

  • cynmarccynmar Texas, USAPosts: 65
    I see that Becky is in surgery today. I will be thinking of you and anxious to hear how it goes. When do you have surgery Julia? I have been referred to another Dr. who comes highly recommended by a close friend and another surgeon in his area. Hopefully I'm headed in the right direction. I will be getting another opinion Sept 10th. I go back to my PC tomorrow & will see about adding something to my Cymbalta for breakthrough pain. Got lots of rest over the weekend which helps, but back at work now and I know the pain will return by evening. I just feel so much older than I really am. Like you, jellyhall...hope I haven't been left too long. Good luck to all and thanks for the comments. Cynthia
    Cervical foraminotomy 12/20/13 (herniated disc) C5-C6
    Lumbar microdisectomy 02/28/14 (herniated disc) L4-L5
    Mild Disc Bulge L5-S1
    Moderate Facet Arthrosis L4-L-5 w/gr1 Anterlolisthesis
    Spondylosis w/gr 1 Retrolisthesis L3-L-4
    Failed Back Surgery
  • Cynthia, I don't have a date yet. I let my surgeon's secretary know I wanted to go ahead on monday morning, and she said they will get back to me with a date... hopefully it won't be too long for either the date, or letting me know when it is, so that I can start planning...

    Did you manage to get anything additional for pain relief on tuesday? I try really hard to minimise my pain killer usage, but it has definitely had to increase over the last 10 days... :-(

    Really pleased to see Becky back and posting about a successful surgery - hopefully many of us here who are awaiting surgery will be in a similar position in the not too distant future!

    Best Wishes

  • chrelseycchrelsey Posts: 90
    edited 08/22/2013 - 2:00 AM
    Thanks you both so very much for your kind words and good wishes!

    I am three days post op now, and SO very glad I made the decision I did. Although it's too early to know the full extent of the success of the surgery, in my book it is a check in the "win" column because it is a step forward. I have been stuck in a pain cycle that was going nowhere fast, and although I may still have pain and a long road ahead of me, I feel like I am at least moving forward!

    So, how has it been? First, let me say AWESOME diet! The 10 lbs. I had gained while comfort eating my way through the anxiety leading up to surgery is definitely coming off! I had read so many stories of people not being able to swallow anything, sometimes for several weeks, and I was concerned that it would be really bad. However, It wasn't as bad as I had expected. My throat was naturally sore from the breathing tube, and it does also feel very bruised when I swallow, so I am sticking to liquids and soft foods like yogurt, bananas, soup, etc., but it's not unbearable, and I don't feel like I'm choking when I do swallow.

    The ACDF isn't my first rodeo - I had a laminectomy in 2010 - but I have been very pleasantly surprised with how well I feel. Yes, there is pain - mostly in the back of my neck and between my shoulder blades, which crescendos into a petty bad headache at times, but, I'm able to stay on top of it with my pain meds - which is Norco. I have pretty good energy and am up walking around the house and outside as often as I can - but the heat and humidity where I live really makes walking inside a better idea this time of year. I do still have the same tingling/numbness in my tailbone area as I did before the surgery, but I know it is going to take some time for the nerves to sort themselves out and settle down. All in all, it was a good decision for me - my condition was only going to get worse over time, so I'm glad I did something now rather than later. For me it's all about quality of life. We only get one shot at this life, and if I can do something to make it better for myself - or for the ones I love - then I have to run full steam ahead!

    Good luck to you both as you move forward in the way that is best for you, and I look forward to hearing more about your journeys!

  • cynmarccynmar Texas, USAPosts: 65
    edited 08/22/2013 - 4:56 AM
    Julia...dr increased my Cymbalta dosage and is giving me free samples through the end of the year because Cymbalta is not in the formulary of my insurance so would cost me over $600 per month. The patent is supposed to be released by then.
    I missed work again yesterday...don't know how much longer I can keep this up? My boss thinks I am disabled...lol (not really funny) I wonder? Becky, your progress sounds encouraging. Glad to hear you are doing well. Helps us feel better about deciding to go with surgery. Cynthia
    Cervical foraminotomy 12/20/13 (herniated disc) C5-C6
    Lumbar microdisectomy 02/28/14 (herniated disc) L4-L5
    Mild Disc Bulge L5-S1
    Moderate Facet Arthrosis L4-L-5 w/gr1 Anterlolisthesis
    Spondylosis w/gr 1 Retrolisthesis L3-L-4
    Failed Back Surgery
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