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ACDF

Although I am 6 months out from my c6-7 ACDF, I still suffer from daily pain, aching and sleep issues from pain and aching. Some days are better than others and I have faithfully kept a pain log to see what makes it better, what makes it worse. Stress is horrible for pain. I am a RN in a Trauma ICU, so it is very physical. Some days I come home and think my God, I hurt so bad. I have good days and bad days. I was not promised a rose garden free of pain when I chose the surgery. I was having pain so debilitating I could not function and would rather have died, I also lost use of my left triceps. I refer to my pain log to see that indeed I have made progress and I have come to the conclussion, I may never be "pain-free", but it is better. I also realize that the possibility of having the level above or below is there. I take each day as it's own. The forum allows me to see others too are not perfect in their recovery. If you are having severe depression and are on an antiseizure med, check it out, I became suicidal on gabapentin.
Have faith, believe and take it one day at a time. Sometimes, I take it one minute at a time. I am grateful to be able to be at work. I use alternative medicine: massage, myofascial release, reiki and magnesium, calcium, vitamin D and Omegas. I follow my surgeons instructions, as he is the expert here. Sometimes, we have to take and put mind over matter. Meditate, be kind to yourself, allow yourself to grieve the loss of health, seek alternative health options, seek counselling. Do whatever it takes. I live each day with gratitude that I am at least somewhat better and am hopeful that one day I will stay in my comfort zone.
As far as addiction, that is not what most people with chronic pain have, they are dpendent upon the drugs, it allows them to function. I use robaxin for my muscle spasms as that is what generates most of my pain, the narcotics, they rarely help, I might as well drink a cup of tea.
Be patient, nerves are slow to heal. That graft will take a year to heal and the nerve was damaged. I am not being pollyanna, I am trusting that I will have the best possible outcome that I can. I hope the best to everyone that has had spine surgery, because honestly, I never knew this kind of pain was even possible and I have been an ICU nurse for more than 30 years. UNMEASURABLE pain is not how people would chose to live and no-one understands it, unless they have suffered it.
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Comments

  • Ms PixieMMs Pixie Posts: 154
    edited 12/05/2012 - 4:53 PM
    for a wise and comforting post!
    I also had surgery recently (acdf 7 months ago). Im still recovering, some weeks by leaps and bounds, others it is 2 steps back. The nerve damage is slow to heal and there might be permanent weakness and loss of reflex.
    But! I accept that and I am grateful for my results. I can work again and Im starting to live after a five year downward spiral until nothing was left but the suffering and then surgery this year. I have learned to be more present.
    This journey has changed who I am and my outlook on life. Im more grateful to everything that is life since I know how things that you take for granted can be taken away from you, suddenly or slowly.
    I try to do everything I can now, to maintain quality of life; be it physical, mental, spiritual. I take small steps and I have learned to accept less than perfect.
    I might not be able to do all things I once could, but I can do other things! And my mind and heart is still free and well.

    Victoria
    Cause: car accident & genetics
    Effect: herniations C4-7, stenosis, osteoarthritis, myelopathy, neuropathy
    Non-invasive Treatment: everything under the sun
    Invasive Treatment: 2 level ACDF, C5 & C6, May 2012
    Moving Forward: SCS
  • I am firm believer that your body needs about 2 years to heal from the surgery, while at the year mark you should be fused and for cervical patients sometimes even sooner on the one levels. However your body needs to heal, adjust to the new way your neck will function. Other than the listed vitamins above I might suggest vitamin B as it does help with nerve issues. Each prescribed medication can do different things to each one of us, so it so very important to be in touch with our own bodies. When using a prescribed medication, my rule has always been to introduce one new drug at a time, so you know how it reacts to your case.

    But it will take time and pain free might not be what happens. But you can achieve to be as pain free as possible.
  • jellyhalljjellyhall Posts: 4,372
    edited 12/06/2012 - 4:56 AM

    I am four weeks into my recovery from a two level ACDF and am doing pretty well.
    A am taking Gabapentin which will run out in a few days time. I guess then I will know how I am. Before surgery I had been taking Nortriptyline for about a year, so wasn't sure quite how much pain I had. It definately had reduced how often and how bad the pains were. I am still having nerve type pain in my hands, arms, feet and legs. I go back to see my surgeon for the follow up on 20th December.

    I have been told after my lumbar fusion 2 and 1/2 years ago that I would never be pain free because I had problems throughout my spine, but that surgery was a great success at dealing with the very high levels of pain I was in then.

    I may not be pain free, but I am in a much better state than lots of others and I can still enjoy life and help and support others.
  • jellyhall said:
    I am four weeks into my recovery from a two level ACDF and am doing pretty well.
    A am taking Gabapentin which will run out in a few days time. I guess then I will know how I am. Before surgery I had been taking Nortriptyline for about a year, so wasn't sure quite how much pain I had. It definately had reduced how often and how bad the pains were. I am still having nerve type pain in my hands, arms, feet and legs. I go back to see my surgeon for the follow up on 20th December.

    I have been told after my lumbar fusion 2 and 1/2 years ago that I would never be pain free because I had problems throughout my spine, but that surgery was a great success at dealing with the very high levels of pain I was in then.

    I may not be pain free, but I am in a much better state than lots of others and I can still enjoy life and help and support others.
    Yes, we may never be pain free again, but I am way better off than pre-surgery. Like you said, the high levels of pain that I would experience every day before, thats gone. It only returns on flare ups, but the flare ups pass faster. And I am a lot more thankful now, for every thing I can do and participate in.
    Cause: car accident & genetics
    Effect: herniations C4-7, stenosis, osteoarthritis, myelopathy, neuropathy
    Non-invasive Treatment: everything under the sun
    Invasive Treatment: 2 level ACDF, C5 & C6, May 2012
    Moving Forward: SCS
  • susabellssusabell Illinois Posts: 241
    edited 12/06/2012 - 5:34 PM
    I am sure you must be under a huge amount if stress in the job you do. Sometimes I often think it takes a special person to handle such a position. I also agree about the Vitamins and Minerals our body needs to heal. I had a horrible time on the gabapentin, I always felt like I was going to fall and I would not drive the car because I just could not do it, so that medication was a no go for me. I have been introduced to a medication for my 3 level acdf c4-7 (post surgery 2 years ago) the medication is Opana ER 10 mg every 12 hrs. I have had some great results, as a good friend of mine is a RN and has seen a lot of improvement. I never had Major Spine issues in my life before this. It has changed my life so much. I now understand the meaning of "chronic pain" all to well. We will almost go to any measure to relieve the pain.

    I had a RFA procedure on my c6 & c7 Bi-Lateral on the 27th of November I must say it was one of the most painful procedures I have ever had in my whole life. I am hoping and praying this gives me some relief, as I am so tired of it all. I realize I have only been dealing with this type of pain since September of 09, but it sure makes me tired I know that. I can not keep up with my friend's who are my same age, I often have to cancel at the last minute if I have been invited to an event, as I also have flare ups where I just can't make it. If I do happen to be feeling good enough to go out I pay for it for a few days later. Luckily I have found a Pain Management Doctor who is Understanding, and who also told me I am not an addict, I just need this medication to have some type of life because with out it I would spend a lot of time in bed.

    I hope everyone has some good days ahead as the Holiday's come closer. This year I might even be able to attend my Family's Annual Christmas Party. Thank you for your post as I found it very comforting to me. :)
    ACDF C4-C7 5/13/2010. Synthetic Bone Graft Failed Fusion.
    PCF C4-C7 8/13/13. Rods and Screws Fused in 3 Months with Autograft.
    C6-C7 Spineous process Surgically Shaved Off 3/11/14.
  • lansurllansur Posts: 10
    edited 04/17/2013 - 9:37 PM
    I had acd&f fusions at c5,6 c6,7 in 2008 (Jan and Oct) and most recently in October of 2012, c4,5. On all occasions, the post operative pain has been chronic and a 7 out of 10 usually. I had tried gabapentin - my body hated it! The only pain meds that have any effect have been dilaudid and, for the past 2 years, oxy IR at up to 100 mg a day. I reduced that intake to no more than 50 mg (10 x 5 mg pills) a day. I did not decrease with medical assistance; just on my own and the cold turkey was pretty tough but I got over it within days. Now I find myself increasing my intake so that over the past few days I am up to 15 pills. I had done the Radio Frequency Ablation/Lesioning 1 1/2 years ago and agree that that was probably the most painful procedure of all of my 67 years!!! Especially the 'pre-treatment' whereby they freeze the trigger points (5 needles each side of the upper spine) to see if the immediate freezing works. This, in order to know if those are the correct nerves to 'lesion'. I am happy to say, that although the second pre-treatment of 2 weeks ago was THE MOST PAINFUL, the nerves that were frozen (for only <5 hours) were the nerves that were causing me the most pain. So, 1 month from today, May 19th, I am scheduled for my second RFL Radio Frequency Lesioning and I am hopeful that this will avert some of the constant pain. I will be happy to report back on the result of that procedure if anyone is interested. Note please that I continue to exercise - either eliptical at gym or 5 mile run 3 times a week to keep the body from going to pot! It's not easy especially given the effects of sedation caused by the oxy!! It takes all the energy that I can muster to get started, but, in the end, I am truly thankful I did it. In the meantime, God speed and grant all of you the courage and grit to continue on as best you can!!! And thanks to all who have shared on this forum! Gord in B.C.
    lansur
  • jellyhalljjellyhall Posts: 4,372
    edited 11/14/2013 - 4:45 AM
    Yes please do let us know the result of your second RFL. We can all learn from each others experiences and arming ourselves with knowledge can be helpful.

    I wish you well and hope that you will get some wonderful relief from the procedure. :-)
  • Wow! Your comments are amazing! I had the surgery 4 weeks ago and just joined here.
    I hope you are all feeling better now :)
    Zillu
  • Hello my fellow sufferers: This may be repetitious, but I had C5-6 and C6-7 surgeries in Feb and Oct of 2008 and lastly in Oct, 2012 - C4-5. I have had little relief and my pain rating has been forever at 7 out of 10. I have had all the Rx remedies including nearly all the anti-depressants to no avail. I've been on Oxycontin 20x5 mg daily (highest) and realizing this was way too high, I gradually, without MD's advice, reduced to 6 - 8 -10 max daily. This over the length of 3 months. I found that the Oxy was doing little to abate the pain. Like many of ;you, I was not even getting the "buzz" that many refer to. I had an ultrasound of my R shoulder and there was a 1/4" tear to my tendon.
    1. I would very much like to know how many other ACD&F surgery subjects have had rotator cuff injury and:
    2. how many of same had shoulder surgery or how many of same had tendons repairing themseves.
    Also, relating to my C4-C7 fusions, have any of those subjects had the pain resolve without (or with) other medications.
    I am presently taking, along with a modest level of oxy, cipralex, arthrotex and doxapin which is being increased today to 20 from 10 mb capsules daily.
    Question to all other pain sufferers: Since my last surgery 1 year ago, my rotator cuff tendon "supraspinatus" tendon has been throbbing so that I can no longer sleep on either side without notable pain. My pain dr. said he thought it was because I was strapped down to the O.R. table (to immobilize my back). In the process, they tightened the straps resulting in injuries to my rotator cuff. (This is not confirmed but logical presumption.) I have tried nearly every treatment there exists includint pt., acupuncture and RF Ablation. PLEASE, ANYONE: presently this 67 year old (used to be very fit having run 6 marathons in the last decade) is bedridden since it is the only relief I get from my upper back/neck pain is to lie down in bed. It is NO WAY TO LIVE and I would be grateful if anyone can give any suggestions for resolution of my neck/back pain. Thanks very much in advance. GM
    lansur
  • lansurllansur Posts: 10
    edited 01/01/2014 - 12:59 PM
    Hello, I thought I had posted my reply but guess not. I had my 2nd RFL (ablation) procedure and it did not effect any long lasting relief. Only relief was immediate where, I presume, lidocaine was introduced. As soon as the anaesthesia wore off, the pain came back. (I presume that the trigger points were missed??)
    I only wish that they could freeze that whole upper-cervical- spine to block the pain. But, "they" tell me there would be a 2% chance of a stroke it they tried that. Did not tell me if that was a 2% chance of getting a stroke or not getting one. Any thoughts out there? I have been experiencing pain for eight years now and am getting very very tired of being unable to involve myself in many facets of family life!!! If there was a way to freeze that area of my C1 to C9 (or thereabouts) I would welcome any educated suggestions!!! Thanks for your attention and anticipated response!
    P.S. I should advise that I have had 3 such fusions. The first in early 2008, the second in Oct. 2008 and the last in Oct 2012. It was only following this last surgery that I noticed pain in both shoulders that were confirmed to be supraspinatus tendon damage.
    lansur
  • lansurllansur Posts: 10
    edited 01/12/2014 - 10:11 AM
    I posted another comment today in response to another's suggestion that the pain could be due to the surgeon's changing the original curvature of the spine. This was a thought that had crossed my mind several times. Surely a change in such spinal curvature would exert forces on neck nerves, muscles etc. etc.. I welcome any comments. Also, as a result of my 3rd and last cervical fusion at C4,5, both my shoulders were injured (supraspinatus tendon tears) . It is believed that this occurred when I was strapped too tightly to the operating table. It is indeed unfortunate that there is such a lack of common sense in these specialist surgeons who seem motivated only by expedience and money. Any advice or comments are greatly appreciated. Gord in B.C.
    lansur
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