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Would you agree to ACDF if there is no pain?

spineanxioussspineanxious Posts: 19
edited 06/12/2014 - 8:09 AM in Back Surgery and Neck Surgery
Dear all, I have a bit of a dilemma. While I know that no one could make a decision of having a surgery for me, I'd really like to hear your thoughts.

I'm scheduled to have a 2-level ACDF (C 4-5, and C 5-6) in the end of June. I've been diagnosed with myelopathy. My symptoms are hand numbness, clumsiness and weird "electrical" buzzing in hand/feet. I've seen two specialists and both recommended surgery as my spinal cord is "severely" compressed by a disk herniation at C 5-6. I haven't been given the exact measurements, but my ortho estimated nearly 50%.

The problem is - I am in no pain whatsoever. I'm in no great discomfort (yet). While my neuro symptoms are unfortunate, I can certainly live with them. Not only that, I could swear all my symptoms are somewhat improving as weeks go on.
My doctors tell me that myelopathy only has a potential for worsening, not getting better. Still, I keep hoping.

It's just so hard to compare the possible future risks without the surgery, to the very real ones that come with one.
Did anyone delay their surgery due to lack of pain and was it a good decision?


  • I believe you need to get third opinion or even more. If they all say you need the surgery then you most probably need one. In my case two said no and one said yes to the surgery. I do not have much pain either but my left hand and part of my forearm is numb all the time. It has been two years and I steel refuse to have surgery. Good luck
  • Thank you very much for your response, Fardaaftab.

    I'm going to get more opinions indeed. My docs so far had a way of making it sound somewhat urgent. I feel like i constantly have to push the timeline and not be rushed.

    Two years and not much worsening? That sounds really encouraging. Do you have any compression on your spinal cord? Is your numbness has been more or less the same in the two years?
  • I do not have any compression on the spinal cord. And the numbness has not changed for past two years. the numbness is very bothersome but the outcome of fusion is unknown. I do have minor disc issue at other levels but the main problem is c5-c6
    If you have spinal cord compression that could be a future problem. please keep in touch

  • sandisandi Posts: 6,342
    edited 06/13/2014 - 5:41 AM
    The decision to undergo surgery is always a very personal one........but the truth of the matter is , when you are dealing with spinal cord injury, it is a whole other ball game. The longer you wait, the worst the outcome can be.
    While I would tell someone who isn't having much pain in another area of the spine to wait, try conservative treatment, in your situation I would tell you exactly the opposite. Give it some serious consideration.
    The cervical area of our spines is responsible for our body's ability to function throughout our entire body. Breathing, heart rate, muscle control, and more. Compression of the cord, in that area can have devastating consequences, that we can't begin to fathom.
    I understand the need to get a second ,even a third opinion, and would encourage you to do that, but I also would encourage you to ask the hard questions, such as what if I choose not to have surgery? What is the likely outcome? Any idea how long it might be? What are the risks and benefits of having this surgery?
    And I'm sure that you have others..........

  • Thank you very much, Sandi! This is a very thoughtful feedback. Your advise does make a lot of sense, and prompts me to carefully consider the surgery.

    Also, I've just come back from a "third opinion", and the doctor (as all the others before him) expressed very similar sentiment. He was quite thorough in answering all my questions, of which I had whole two pages worth. That makes my official third surgery recommendation.

    While he couldn't say in definite terms when and how the decline would come about, he was certain that with my level of spinal cord compression the outlook is grim. He thought that even if i never re-injured my neck again, I may experience further loss of function. Since there is no telling how fast or slow this can happen...

    Thank you for your support. I believe that this surgery is the right thing to do for me. Should be scheduled within the next few weeks. Wish me luck.

  • That's the problem is that no surgeon can tell us when or how fast something will progress and we are left to try to weigh the what ifs, and try to bargain our way out of it.
    I am facing a third surgery, first one resulted in a spinal cord injury, the second one was a salvage operation to attempt to keep me on my own two feet instead of a wheelchair.....it worked, but the second surgeon used bmp ( bone growth material) to attempt to fuse the area and stabilize it.....the only problem is that the bmp moved, and wound up adhering the cord covering to the vertebra at a couple of levels and severely compromising the canal diameter. It is supposed to be around 14 mm at that level , but mine is 3.44 mm at last measure I believe it was. My last consult with a surgeon I was told that I need a third surgery but because of the adhesion of the dura, it will result in a long dural tear which will take some months flat on my back to heal......then of course is the risk involved, so we have all decided that when I become paralyzed, we will do it then, since the risks are too high now.......so it is not a question for me of if but when. So far, I am still on my own two feet but who knows for how long. My injury is in the lumbar area. If it were in the cervical area, I would have pushed for the surgery then.
    I will be watching to see how you do, and wish your surgeons great skill and gentleness , and you a great outcome!
  • spineanxioussspineanxious Posts: 19
    edited 06/14/2014 - 4:19 PM
    Sandi, I'm so very sorry that you have to go through this. I will keep you in my thoughts and keep wishing you well.
    This is such a difficult position to be in. I hope your "when" is as far away as possible!

    Thank you for the good wishes, I've confirmed my June 23rd date for surgery and hope to come back to the forum with uplifting updates.
  • I didn't tell you that to make you feel bad.......just wanted you to know that I understand the dilemma and the worries about the what ifs......I hope my when is far off as well, but when it happens, I will deal with it....just as we all do.
    I spent some months in a wheelchair after my first surgery, and have a really cool powerwheelchair and a supercool purple manual custom chair.......for now, they sit waiting.
    Each day that I am able to wake up and stand on my own two feet is a blessing and one that I am grateful for....so I consider each day a gift.
    I will be thinking of you, and wishing you a terrific outcome......and we'll be here to help you through the rough days of acute recovery and after. You are going to be one of those success stories...I just know it.
  • Hi, best of luck with your surgery. I'm in a similar situation to you although I am in pain with my arm, shoulder and getting awful headaches plus the usual tingling and numb arm and hand. Scheduled for ACDF this week for herniated C5/C6 on both sides. Hopefully it will be the end of years of reoccurring pain. Let me know how you get on, will be thinking of you and hopefully we can share our success stories :)
  • spineanxioussspineanxious Posts: 19
    edited 06/15/2014 - 9:48 AM
    Oh, cervical headaches can be the worst. Mine come and go, though i've been lucky they haven't been very frequent in the last few weeks.

    I will be thinking of you too, wishing your surgery goes great. Let's strive for those success stories.

    Are you adjusting your diet in any special way (other then the pre-op instructions) before your procedure? I asked my doctor and he seemed rather ambivalent about it, but I've read opinions that limiting sugars can be very helpful, as can increasing protein intake.
  • Hi again. I haven't adjusted my diet, I have a fairly healthy well balanced diet as it is. I am trying to increase my walking though as I've read lots that walking is the best exercise after ACDF so hopefully the sun will keep shining in the uk!! Best of luck, I will report back later in the week after surgery :)
  • PinklouloumPPinklouloum Posts: 5
    edited 06/19/2014 - 6:31 AM
    Hi again, just to let you know I'm 24 hours post surgery. All went well, was in surgery about 3 hours. Apparently my c5/6 disc herniation was really quite bulky so that explains the years of misery I've had with it. Feeling ok so far, swallowing is a bit tricky but no worse than having a throat infection. My pins and needles have already subsided to about 25% of what they were so all quite positive at present. Having upper back/neck pain and headaches but this is easily managed with my gabepentin and paracetamol. Will keep everyone posted how I get on but thought I'd just post quickly to say so far so good :)
  • Wonderful news, sounds like your surgery went really well! 25% reduction right off the bet sounds like a great sign to me. I hope that your pain/headaches and surgery discomfort fade quickly. Sending you good wishes of swift recovery! Keep us posted as you get better.
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