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    Old 11-21-2013, 09:44 AM   #1
    Ronn9
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    Unhappy Potential ACDF victims be aware!!!

    I want to start this off by saying, this surgery may help and fix all your issues and it could be the best thing you could ever do to fix your problems.OR you could be like me. Im not sure of the stats on this but I wish someone would have told me that once you have one spinal surgery , you usually end up having more then one. I have had two so far and they are talking about a third that I have been putting off for over a year now. It just hasnt seem to fix my pain issues at all if anything it has made them worse. I may be the exception to the rule and hopefully others dont experience the same issues I have with this surgery. But I have never been in more pain then I am now post surgery number 2 and pending surgery number 3. The pain that goes down my neck into my arms to my fingers has never been worse despite being opened up and hardware being implemented on multiple occasions. Just wanted to put this out there, Its not Candyland thats for sure. Do your research and check for alternatives before settling to have an ACDF..Once again this is just my opinion judged by my horrible experiences.....

     
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    Old 11-22-2013, 02:36 AM   #2
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    re: Potential ACDF victims be aware!!!

    Ronn9... I have to take issue with your statement that after a spinal surgery, one "usually" needs more. As you can imagine, this is a matter of considerable interest and concern in the field, so studies have been done.

    One study that I've found several times - but can't seem to find today - had 27% of ACDF patients requiring a followup surgery over a ten-year period.

    The debate, I think, is not over the numbers so much as the causes. One side proposes that the ACDF itself - essentially freezing one segment - puts added stress on adjacent segments. The level of additional stress has even been calculated, and you can find that online.

    The other side points out that there were pre-operative stresses over the entire cervical spine. While one level may have been stabilized by the ACDF, those trans-spinal stresses continue. Eventually (in 27%, anyway) they damage an adjacent level badly enough to require surgery.

    In my amateur's opinion, there can be no doubt that BOTH factors are to blame.

    Anyway, I hope you get to the bottom of your problems, find a solution, and report back here once you do....

    Last edited by WebDozer; 11-22-2013 at 08:39 AM.

     
    Old 12-04-2013, 07:14 PM   #3
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    re: Potential ACDF victims be aware!!!

    My surgeon AND his PA told me that I might need surgery at a later date IF the levels below and above the fusion went. So no worries here about not being told about it.

    As a patient you have responsibilities too before any kind of surgery. Asking questions is a big part of those responsibilities. If you have any kind of degenerate disc problems you might possibly need more surgeries in the future. I have it and I am quite aware of what MIGHT happen in the future.

     
    Old 12-15-2013, 06:36 PM   #4
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    re: Potential ACDF victims be aware!!!

    I have to agree with you. I too am suffering daily with huge amounts of pain since my second cervical surgery. Now they want to do a third, which includes a fusion from the base of my skull to T2.
    I have many questions for my neuro before deciding either way!

     
    Old 12-27-2013, 10:52 PM   #5
    Laenini
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    re: Potential ACDF victims be aware!!!

    I have had 2 ACDF surgeries (one level in 2006, then the level above and the level below the original fusion in 2013) and I am still in pain on a daily basis, I will always be in pain for the rest of my life. As long as I have a good pain management physician I can accept that. I too have another surgery that has been proposed. Every level of my thoracic spine is herniated and at my last surgical follow up it was proposed that I submit to a 12 level thoracic fusion. I said I would submit once I was so bad that I couldn't crawl to the bathroom anymore, until then i will live how I am. So I think I am qualified to make a few comments that might be helpful here:
    First: My very first neurosurgeon said in 2006 that he never, ever performs spinal fusions to correct pain. If pain is the only issue, he sends the patient to pain management. His reasoning is that fusion surgery does not reliably correct pain, and can in fact make it worse (which was my experience). Instead, he only performs spinal fusions if the patient's back is not stable and the fusion is needed to protect the spine and preserve function. I had a huge bone spur pressing into and compressing my cord, so my spine was not safe. I had the surgery to make it safe and that was accomplished. But I was told not to expect pain relief from the procedure. I think that was a fair and valid warning.
    Second: As my pain continued to exacerbate, that first surgeon said I should set out to discover why my c-spine was so badly degenerated. That started a LONG journey of seeing MANY experts. Most of whom blamed me for the pain I was in, many of whom accused me of lying to get drugs. I became more and more desperate to find someone who could tell me what was wrong and could help me feel better! I had some very dark days, I was in so much pain with no relief in sight. I finally worked up the courage to try one more pain management physician. I thank God I did as this man saved my life. He got my pain under control for me for the first time, then because he started his career as a chiropractor who then went on to medical school, he looked at me through a little different lens. While most of my pain was in my upper back and neck, he was the first doctor who sent me for an MRI of my whole back, not just my neck. He also ordered an upright MRI so that gravity would be acting on my spine as it normally does. That MRI was a breakthrough as my WHOLE spine was a mess, NOT just my neck! I had a total of 16 degenerated, herniated discs! Finally, armed with that MRI other providers started to respect me and look deeper into what was causing my problems. That was when I finally was diagnosed with a spine deformity called Scheuermann's Kyphosis (likely present since adolescence, but not diagnosed until age 47 in me!) That then led finally to the diagnosis of a genetic syndrome called Ehlers Danlos Syndrome. EDS causes widespread, early onset arthritis as its a defect in the collagen that comprises the cartilage in our joints. Through all of this I learned that the people who have bad outcomes and need multiple surgeries often have other undiscovered disorders that explain why their spines are so fragile.

    My big takeaway message here is that if you too are suffering and facing multiple surgeries, make sure the surgeries are being done for the right reasons, get into good quality pain management (this may take some hunting) and then finally look for additional explanations for why your picture is so complex. Until the full picture is finally uncovered, no one can really make the best possible treatment decisions for you as they haven't found all of the needed information to form the best treatment plan. Finally, if you get so lost in the hunt that you feel you cant go on, please, please tell someone that you are feeling like you want to just end your pain! Confide in a friend who can help you advocate for yourself, and keep leaning on that person as you demand the help you deserve. For me, that person was a friend who had a social worker background. I felt safe with her, and because she wasn't family she didn't have the day to day strain of living with me. I believe that helped her be an effective and objective advocate for me. In contrast my husband was too close to the situation to advocate effectively, so I'm very grateful my friend stepped up!
    I hope this helps someone. I help someone out there who may be as bad off as I was then and help them see that life can become enjoyable once again, even when one has chronic pain and unresolved spinal degeneration.
    __________________
    Ehlers-Danlos Syndrome Type 3
    Scheuermann's Kyphosis
    Severe DDD with multiple herniations and areas of stenosis, 16 affected disks!
    C4-5 ACDF 2006
    C3-6 ACDF 2013
    Chronic Myofaschial Pain Syndrome

    Last edited by Administrator; 12-27-2013 at 11:10 PM.

     
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    Old 02-16-2014, 05:31 PM   #6
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    Re: Potential ACDF victims be aware!!!

    Quote:
    Originally Posted by Ronn9 View Post
    I want to start this off by saying, this surgery may help and fix all your issues and it could be the best thing you could ever do to fix your problems.OR you could be like me. Im not sure of the stats on this but I wish someone would have told me that once you have one spinal surgery , you usually end up having more then one. I have had two so far and they are talking about a third that I have been putting off for over a year now. It just hasnt seem to fix my pain issues at all if anything it has made them worse. I may be the exception to the rule and hopefully others dont experience the same issues I have with this surgery. But I have never been in more pain then I am now post surgery number 2 and pending surgery number 3. The pain that goes down my neck into my arms to my fingers has never been worse despite being opened up and hardware being implemented on multiple occasions. Just wanted to put this out there, Its not Candyland thats for sure. Do your research and check for alternatives before settling to have an ACDF..Once again this is just my opinion judged by my horrible experiences.....
    You make some valid points. I have read that as many as 1 out of 5 people who have fusions will need another fusion later on, often within 10 years.

    A lot of people say the ACDF is an easier recovery than posterior surgery. So I was trying to decide between an ACDF and a minimally invasive posterior foraminotomy, and I finally found a surgeon who does a lot of the latter. He said my bone spurs are on the sides, so I don't have spinal cord compression or need the discs removed, and that often fusions lead to more fusions, so for my case he is advising the posterior foraminotomy at two levels. So that is what I'll try first.

     
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