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  • ACDF 16 Wks Post-op & Still Miserable - Advice/Hope Wanted

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    Old 06-02-2008, 10:58 AM   #1
    backpain
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    Question ACDF 16 Wks Post-op & Still Miserable - Advice/Hope Wanted

    I'll keep this as short as I can...
    I had a 2 level (c-5/6 & c-6/7) ACDF on February 8, 2008. Here it is 16 weeks later about all I can say is things are different - not better. Prior to surgery left arm & deltoid pain were my main complaints. Immediately after the surgery my left shoulder began to hurt in the form of a constant ache and occasional sharp pain and my left triceps was (ever since surgery) about 50% weaker than my right. Nonetheless, for the first 10 weeks after the surgery I was feeling progressively better - a lot of which was, I think, recovery from the surgery itself. At about 7 weeks post-op I returned to work (computer stuff) without significant issues. Then at about 10 weeks post-op things sort of reached a plateau and began (in my opinion) moving rather backwards. Since mid-April, I've developed a painful (burning) and stiff neck which never goes away. Sharp pains and occasional small spasms in both deltoids. Sharp pains going down both arms and into the hands/fingers and continued weakness without improvement in my left triceps. In addition to that, ever since surgery my lower back, which has some disk issues as well, has felt kind of like it is on fire (a kind of tired, burning sensation) with occasional jolts of pain in my buttocks, legs and feet.
    SOOOoooo... I am definitely wondering about a few things!
    1. Has anyone had an overall similar experience and what was the outcome?
    2. Is this painful and stiff neck a fairly common part of the healing process?
    3. For that matter, does this all sound like a healing process or more bad news?
    4. When does the Doc (Neurosurgeon in my case) usually get an MRI or something to see how things look inside there post-op? - Mine has yet to look at his work...
    At my last visit to the NS on May 12, I told him what I've now told you. He prescribed 3 weeks of physical therapy, 3x per week. The PT feels good - until they stop - then it all comes back. In a week I go back to the NS and I'm feeling rather frustrated. My quality of life ain't what I'd like it to be with this constant pain, etc. But, am I expecting too much too soon?

    Last edited by backpain; 06-05-2008 at 11:26 AM.

     
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    Old 06-03-2008, 01:23 AM   #2
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    Smile Re: ACDF 16 Wks Post-op & Still Miserable - Advice/Hope Wanted

    Hey there - hang in! I am fused C4-7 after 2 surgeries. What you are feeling is probably average for the course. You also are probably doing too much even though you think lots of time has passed - it hasn't. Until you have a good solid fusion you can expect to have pain and symtpoms for sure. Full fusion can take up to a year in some people, but by around 6 months most fuse. Over time you may improve - you are aligned differently now in your spine and your body is adjusting. Along with your nerves and bones healing. This process can take a long time (even 1 to 2 years). C5 is one the most used levels and you will find you may have remenant issues. Even over time your pain will improve, but you may not be completely pain free. Usually the surgeons do xrays about 6 weeks, 3 months and 6 months, but every doc is different. Reduce your more active hobbies for a month and see if you get a little better.

    Last edited by PNo; 06-03-2008 at 01:24 AM.

     
    Old 06-03-2008, 09:30 AM   #3
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    Re: ACDF 16 Wks Post-op & Still Miserable - Advice/Hope Wanted

    Hi, so sorry to hear about your issues. I, too, experienced what your talking about. I had ACDF 3/07, one level(c5/6) and as I progresed through healing, I seemed to get worse! After about a year, I was walking with a cane and unable to carry much because of the muscle weakness in my extremeties. My NS didn't know what to do for me. I ended up, out od frustration, going to another surgeon, on my own bill, seeking another opinion. He suggested a CT scan and found I wasn't fusing at all. Ask your doc to perform a CT scan. Better yet, demand one, they have to meet a patients request, don't let him/her talk you out od it, it's your health!! Once I got my diagnosis, I never went back to the old NS, and I fought the insurance company to go out of network. I had a revision surgery a month ago 5/5/08, and I feel amazingly well!!!! Trust me, I've been down the path, fight for your health, mine only deteriated for over a year. That plays crazy tricks with your mental health!! My docs tried to make me feel like I was crazy or making it up, they didn't think anything was wrong, so I started to believe them, they're doctors!!! Don't buy into it, they make mistakes, too!!
    Good luck, let us know how things go, and mind neckpatient, she's a saint!! She's always right, too. You might be overdoing it, too!
    ~Blessings

     
    Old 06-03-2008, 10:27 AM   #4
    backpain
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    Re: ACDF 16 Wks Post-op & Still Miserable - Advice/Hope Wanted

    Erin72 & Neckpatient, Both of your posts are helpful! Since everyone's unique, I realize there is no "normal", but I've read and heard so many stories from people who either got almost "immediate" relief or who were feeling well and/or making progress by 10 or 12 weeks.
    Neckpatient suggested that I may be overdoing it and that may be the case. However my occupation is "Geek" (System and database stuff in a laid-back, academic setting) so it isn't like I'm a hod carrier or pogo stick tester... Both my work and my hobbies are relatively sedentary so I'm not sure where I can cut back... I do walk about 3 miles a day, but walking usually doesn't bother me unless my lower back is having fits. If I just need to give it more time, then I suppose I'll just have to be a big boy and endure. But, man, this constant aching and shooting pains are slowly turning me into Geekzilla - just ask my kids! A couple of other things I failed to mention in my first post are very frequent headaches that seem to be "rooted' in my neck and occasional sharp, deep pains from inside my neck around where I'd imagine the work was done. Probably just more healing. I believe I will push for a follow-up CT scan at my next appointment -- if for no other reason than to give me some peace-of-mind... Thanks!

     
    Old 06-03-2008, 03:44 PM   #5
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    Re: ACDF 16 Wks Post-op & Still Miserable - Advice/Hope Wanted

    Hey back pain... i feel your pain... I had a acdf c5-c7 just like you.... then about a year aho i had the same area done thru the bacl (posterior) I am still having limited relief ......... the acdf didnt fuse thats why they went in thru the back now that it has fused i still have alot of arm and neck pain now getting headaches as well.... dont give up there has to be relief somehow!!! my advice to you is try EVERYTHING possible befor you let them open you up again..... im not sure it was the right thing to do with myself....... Good Luck and Keep us posted!!!

     
    Old 06-03-2008, 03:46 PM   #6
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    Re: ACDF 16 Wks Post-op & Still Miserable - Advice/Hope Wanted

    Hi, I'm not able to give you any advice, but I was really interested in your post because of your description of your leg, back and buttock issues. In short I'm laid up with a neck problem and will be having MRI, EMG and ortho surgeon visit in 5 weeks. For the past 4 months, I've spent a lot of my time propped up in bed, or laying.back in a chair, because that's how I get relief from the neck pain. I had a lumbar disc replacement 7 years ago and have another bulging disc at L4/5 which wasn't bothering me enough to operate on.
    About 6 weeks ago I started getting similar pains to what you describe in your buttocks and legs and back, a deep burning, more than pins and needles, like a painful numbness almost, right through my behind, into my tail bone, and then deeper into my lower back. My legs feel heavy and I get patches of numbness in my toes and calves... Sometimes buzzing tingling along the inside of my thighs
    At night, when I lay on my right side, it triggers it. It's driving me crazy, because the best position for me to lie in bed is propped back against pillows... almost complete relief for my neck, but I'm sure it is that position which has caused these other problems in my tailbone and back. The mattress protector and sheets end up pushed down the bed, so I must be putting a lot of pressure on that area of my body. Now, I'm nearly as concerned about my back as I was about my neck.
    After reading your post, I'm wondering if you too have been sitting or laying back a lot since your surgery, and if this might be triggering the same problem for you? Or else it is the irritated nerves in our necks playing havoc with the lower body and legs?
    If it's of any reassurance to you, my hubby and I have both had back surgery, and for him, it was a long hard slog to recovery over 2 years, but he is fine after 26 years. Mine was more of a "2 steps forward one back" progress, but I was 98% back to my old self at about 12 months. There were times I panicked, when all my symptoms had come back and I thought my surgery had come "undone" in some way. A lot of nerves get disturbed with surgery and our body reacts in strange and unpredictable ways to this. My worst time was at 5 months, and I completely dropped my bundle then, thinking it had all failed, but it was just another plateau I'd hit. I was surprised by how vulnerable I felt after surgery, like my spine was made of glass. I was frightened of getting bumped in the supermarket, and petrified of falling over etc. I had a disc replacement and no fusion, so I can't give any advice at all about fusions healing.
    Sorry to be so long, but I did want to touch base with you about the buttock/leg thing. I've read about the piriformis (sp?) muscle in the buttock getting irritated and acting up like this, and I think I may have simply sat on mine for too long LOL ?
    It'd be interesting if anyone else had these symptoms as a side effect of neck problems.
    Hope you have a better day today.

    Last edited by lilydilly; 06-03-2008 at 04:03 PM.

     
    Old 06-04-2008, 07:05 AM   #7
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    Re: ACDF 16 Wks Post-op & Still Miserable - Advice/Hope Wanted

    Ron - and anyone else who wishes to contribute... How do you deal with/manage the constant, nagging pain, etc.? Lately, I simply try to endure and/or ignore the pain, etc. as much as I can. But I don't think that is really a good way to live. I am considering going to a pain specialist. (PM Dr.) I'd be interested to know how others manage their ongoing/long-term pain and also to hear about experiences with pain management doctors...

     
    Old 06-04-2008, 08:36 AM   #8
    backpain
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    Re: ACDF 16 Wks Post-op & Still Miserable - Advice/Hope Wanted

    Lilydilly, in your post you mentioned "heavy legs" which is yet another nuisance to emerge (or be noticed) post-op. I hadn't really given it much thought, just noticed that fairly often, since my surgery, my legs seem to weigh a ton. It is most noticeable when I am going up stairs. I'd just chalked it up to being out of shape, but there does seem to be a correlation between that sensation (or lack thereof) and my back/neck issues.

    Quote:
    I'm wondering if you too have been sitting or laying back a lot since your surgery, and if this might be triggering the same problem for you?
    Although propped up in bed or in a recliner are probably the most comfortable positions, I wouldn't say I've been spending a lot of time in either position. For me, the leg issues don't seem to be tied to increased sitting, etc.

    I haven't had any work done on my lower back (yet) but the issues there (L-4 & L-5, I think) have been progressing slowly for some time. Back in January the doc gave me a cortisone shot in my C-spine which seemed to make my whole back angry. A few days later the lower back went out and I could barely walk. The doc did an MRI which showed some significant herniation of those lumbar disks. At that point my C-spine was the first priority so we collectively decided to do a wait-and-see on the lumbar. (I wait, the doc sees...) Last visit, May 12, the doc suggested maybe doing cortisone shots on the lumbar and I'm thinking I just may go that route. I've got to get some relief, somehow. Sometimes I just feel so "broken".

    I can really appreciate your post-op "vulnerable" feeling, Lilydilly! For around two weeks post-op, although I knew better, I felt like my head might fall/snap off at any moment...

    Lilydilly, make sure you tell your doc about the other stuff that began subsequent to your C-spine issues!

     
    Old 06-05-2008, 06:07 PM   #9
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    Re: ACDF 16 Wks Post-op & Still Miserable - Advice/Hope Wanted

    Backpain,
    Neckpatient gave you spot on advice - you are probably doing too much, even though you think you should be all better by now. That burning/stabbing in the shoulders is, unfortunately, a common problem after the surgery. The fusion changes the alignment of your cervical spine, which affects your thoracic spine, which affects your lumbar spine - get the picture? Your body is adapting to all this new stuff and as the muscles and joints slowly adjust......it hurts! Also, the degree of nerve damage you had before surgery will affect how long it takes for you to recover. If you were in a lot of pain before surgery, recovery might take a little longer.

    You are at/around a time when the damaged nerves are starting to come back online and are clamoring for attention. Things in your body can get kinda wacky and weird. You can have "delayed stressors", which means you can overdo something on Monday morning, but not start having pain from it until Wednesday night. Strange, huh? The wild and wonderful world of nerve healing....

    Your references to shoulder pain and headaches and surgical site pain all sound pretty common, as do the descriptions of pain shooting into arms and hands. Still, you should go with your gut and push your doctor on this. Better to trust your own instincts.

    A note I think is very important - computer usage is the #1 complaint for causing neck problems and it's related aches and pains. You might think you're "doing nothing" while you're sitting at your computer all day, but you are, in fact, putting stress on your cervical spine just by sitting there. Raising your arms to type affects the neck. Even using your fingers affects the cervical nerves. (so, for example, if you were sitting supported and relaxed in a recliner and using a laptop and basically only moving your fingers, it could still cause you pain.....)

    Watch your posture and do all the suggested proper postioning stuff suggested for working at a desk. You know, rest your feet so that knees are even with hips (I use a lift under my desk), forearms parallel to the floor, your head pulled back and straight on the neck, etc., etc., etc. You can search the internet or even ask your physical therapist to go over that with you.

    And, if there's any way you can pull it off at work, find a quiet place to sit and relax for 5-10 minutes every couple of hours. It will help.

    Also very important - if you are in pain, take something for it. NSAIDS are a no-no for the first few months, so if you don't have something else to take, ask your doctor. Pain causes muscles to tense, which aggravates inflammation and, well, duh, it hurts more. Pain can also cause you do hold your body in funny positions. (hunched, tight, shoulders a classic for neck patients.....) Pain also stresses you out, which negatively affects the healing process. If you can't handle narcotics, ask for something like Ultram.

    Or maybe try Lyrica or Neurontin, which work specifically on nerve pain.

    I really hope you start finding some relief soon. It's awful to hurt and feel bad and not be sure of what's going on. Good luck to you.

    Last edited by ember919; 06-05-2008 at 06:27 PM.

     
    Old 06-06-2008, 05:19 PM   #10
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    Re: ACDF 16 Wks Post-op & Still Miserable - Advice/Hope Wanted

    I had posterior laminectomy not ACDF so I can't help you there BUT...... I too am a computer geek (I own a business consulting firm) and the first the PT told me after surgery was - check monitor position - straight in front, check keyboard height, get a well fitting chair and use a head set with the phone - who know some of the above "being wrong" might have caused my problems in the first place!!1

    Hang in there - everyone is correct that it takes a year or more to heal - some minor problems such as cold feelings in my foot have only stopped recently and I'm 2.5 year post op.

    -sunshine

     
    Old 06-07-2008, 12:02 PM   #11
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    Re: ACDF 16 Wks Post-op & Still Miserable - Advice/Hope Wanted

    Backpain: I have kind of had the same experience, and am about 5 months out. My surgeon didn't know what to do with me, so he referred my to a physiatrist. Just last week I asked the phys for a more aggressive pain management routine. I am devastated that I have this much pain at this point out from surgery. You should check out th epain management board for more info on pain management. There are a lot of posters there and a ton of information. Keep us updated on what your doc says. I am very curious to see how your course of healing goes.

     
    Old 06-10-2008, 08:10 AM   #12
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    Unhappy Re: ACDF 16 Wks Post-op & Still Miserable - Advice/Hope Wanted

    First, thanks to everyone for the recent posts! It really does help to get assurances and share experiences. From what I am hearing, it seems as though I am most likely withing the boundaries of "normal". My scheduled appointment yesterday with the neurosurgeon didn't happen. He canceled once again. (Which cost me a day's pay -- grumble ) Also, the neck and shoulder pain yesterday managed to drill through my neck and skull to my forehead which ultimately brought me to the E.R. In the E.R., they did a CT scan of my head and found nothing... Perhaps "no problems" would be a better way to phrase that... They didn't take any pictures of my neck, but the doc felt pretty certain that the source of pain was the neck/C-Spine area. I'll see my regular internist later this week and I plan to discuss pain management options and perhaps ask him to order a follow-up MRI or whatever of my C-Spine just to set my mind at ease.
    If the things I'm experiencing are normal - and the consensus seems to indicate that -- then it looks like more aggressive pain management is where I should be headed. My neurosurgeon doesn't like to prescribe pain medication unless he sees the patient which is OK, but... I get a script, perhaps a refill or two, but then he won't refill it unless he sees me. My last three appointments have been rescheduled no less than 3 times for each appointment. I think I need to either find a more accessible N.S. or bypass my N.S. and work with a pain management doc. -- Sorry about the rambling, I'm having a rather bad morning and I feel like such a whiner.

     
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