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ACDF still having a lot of pain 7 weeks post-op!

MelWMMelW Posts: 427
edited 06/11/2012 - 8:30 AM in Neck Pain: Cervical
I am new here but have been reading posts since about a month before I actually had surgery on March 9, 2009. I am 29, married with two kids. I will try to make a long story short. I fell back in August 08 and that is when all my pain really kicked in. I was sent to an orthopedic because I was having a lot of pain in my arm/shoulder and they thought I could have injured my rotator cuff, pain meds and PT for a few months were prescribed. When the pain would not go away and kept getting worse I was referred to an arthritis specialist, who was awesome because he instantly knew it was my neck I was finally referred to an NS, thank goodness. I was told I had severly herniated C5&6, which the NS said was not from falling, that just made it worse, he said it was degenerative. I was miserable, I had intense pain in my shoulder and arm and my fingers would get really numb and tingly to where I could hardly hold things. Anyway needless to say I had ACDF 3/9/09 and my arm pain and numbness were totally gone the moment I woke from surgery. But now I am having a lot of pain post-op. I do not in any way regret having it done, I just wish I knew why I am in pain. I have a horrible burning pain on the right side all the way up my neck and on the top of my shoulder (not sure what muscle that is) and have been having a lot of pain in between my shoulder blades and in the middle of my back, which I did not have before the surgery. I just started back to work on 4/13/09, I have a desk job, and by the end of the day I am absolutely miserable from pain. The NS had me on Percocet for the first few weeks and now just has me on Norco, which is pretty much doing nothing. I am normally a pretty active person and this is driving me crazy because I can not hardly do anything anymore, either because of the pain or because I just get worn out quickly. I coach my sons soccer team and by the time practice is over I just want to pass out. Is this normal 7 weeks post op? I know it is a long healing process and I keep telling myself that but I am just getting frustrated! I am waiting for a retun call back from the NS to see if I need to come back in or what to do. My husband is very supportive but he does not understand the pain I am going through so it is hard to try and talk to him about it when he has not gone through it.

Also this site has been very helpful so thanks to all who post!
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Comments

  • Dear, I know exactly how you feel. It's been two years for me and I just continue to get worse. But your just seven weeks post-op, it takes a long time for those nerves to heal. Have you tried Lidacane patches for the burning between your shoulders? It did seem to help me. No one can understand what it's like unless they have been thru it. My husband trys to understand and I don't know what I would do without him, but he really don't have a clue. Good luck.
  • I had my surgery March 3rd. I still have unbearable neck pain and the pain meds are not even touching the pain. I actually am back into pain management and I'm getting an ESI on 3 levels tomorrow. The pain is so bad I'm only getting 2-3 hours of sleep a night and I even take tylenol pm before I go to bed. I haven't been able to be as active as you. I need ice on the back of my neck 24 hours a day.

    Good luck and I hope the neurosurgeon calls you back soon.
  • for your posts. And am sorry to hear you are still in pain too. After reading a lot of the posts on this webiste it makes me think this is not going to end for a long time (if ever). I am hoping for the best but I am also not going to think it is all just going to get better either. Not to mention my dads side of the family has a nice long list of back/neck problems, he has had 3 or 4 surgeries on his neck already one of which was the same I just had. Then they had to go back in and remove 3 vertebre. He has had back/neck problems for as long as I can remember.

    I have not tried the Lidacane patches. I will have to look into that. I take my painkillers but they really just barely take the edge off and I have used ice and heat, which I can't quite tell which seems to help better.

    Luckily I really like my NS and he really seems on top of things so hopefully he will be able to help me with this and try to figure something out to help manage the pain. I think he does not want to "jump the gun" and he is assuming this is all the healing process but in the mean time I can barely work and every day sitting at this desk I am miserable and count down the minutes until I can leave.

    I wouldn't change anything I did for the world, I just can't wait to find out what is going on and why I am hurting!

  • I'm six months out from surgery and continue to have the same pain you describe. My surgeon said that the pains in the back are muscle spasms and I continue to take flexiril for them. The ache in the neck he said is normal, although I don't know why it happens, and I continue to take hydrocodone for it.

    These pains continue on and I don't know if PT would've helped had I been able to continue going (I got laid off and no insurance for PT). My surgeon continues to refill my scripts so I have to assume that having these pains are not uncommon.

    I hope you get to feeling better. Seven weeks is really still early into recovery. You mention taking norco, but do you take any muscle relaxers?

    Take care and keep us posted.
    Cath
  • I know it is too early to even tell but I am wooried because I seemed to be on a fast road to recovery until we had a cookout and one of the little kids that was at my house fell and being a mom I ran over and picked him up. He weights at least 35-40lbs. And ever since I have been in some major pain and it has gotten nothing but worse since I started back to work.

    And no I am not taking any muscle relaxers. Right now the only thing he has me on is the Norco, which is like eating a Tic Tac :), I usually have a pretty high pain tolerance so it is freaking me out that the Norco does not seem to help. And I do not want to be on painkillers for ever but I can not afford to not work and my job is pretty demanding so I have to have something to help with this pain.

    I am sorry to hear about your job loss. It seems to be going around, which scares me too. I can not imagine. I get nervous about even asking to leave early because we have had to let go at least 30 people since January. Companies are not even thinking twice about letting people go nowadays.
  • Oh, I didn't know you lifted something (well, someone) heavy. That's a huge no-no. But I understand that instincts just kick in and for that one minute you forget about your neck. Been there, done that.

    I'm anxious to hear what your NS says. I hope you get a call-back soon.

    You might want to mention the muscle spasms that you're having in your back and perhaps he'll give you a script for muscle relaxers - I don't think I could live without them. And I understand how the pain really kicks in with a desk job. Mine did too when I went back to work. That should get better in time, but a long time. LOL

    It's ok about my job - it's a long story, but I believe things happen for a reason and I understand why this happened. It was really a blessing in disguise so no problema.

    Take care of yourself and be sure to update us when you hear from your NS. Feel free to PM me if you want to vent.
    Cath
  • Hello
    I had my second surgery on March 9th as you did. My first surgery in March of 2007 I had ACDF of my C5-7. I continued with pain throughout and just had my C4-5 fused because it was failing. Both fusions had instrumentation with them. to date I am still in a lot of pain with no guarantees it will get better. I have just started Physical therapy which would be a very good idea for you if you haven't tried it yet. Part of the treatment is massage with ultrasound and then some heat and stem. Before leaving I always get an ice pack.
    Have you been on any muscle relaxers? It would be a very good idea for you and you may want to consider going to a doctor that specializes in pain management
    As far as the Norco it is the same as Vicadin and you may need the 10/325 dose but the PM doctor would be able to help you with that.
    Best of luck to you and hope you feel better
  • I see Cath already gave you some good advice. Sorry
  • Still no call back from the NS. He has been in surgery the last couple of days though. I am anxious to hear from him as well, before I lose my mind!

    I talked to my dad a few times about the pain and he has told me PT as well. I think I am going to ask when the doc calls me back.

    Luckily my NS has a pain management doc in his office so that may be the next step.

    I have to say it is quite a relief to be able to talk to people that have been through this, someone that can relate.

    I had thought I researched this to the fullest extent before I had it done but apparently there is no guarantee on how things will turn out. My arm/shoulder are in better shape so I can't complain too much. Not having the use of your arm is scary and very frustrating to say the least.

    thank you all again for your replies, they are very helpful :)

    Mel
  • Well the nurse just called me back and I missed the call because I did not see my phone ring (I have to keep it on vibrate at work).

    She said she talked to the doc and because I am only 5 weeks out, which technically I am about 7 not sure if that makes any difference at all, he wants to wait a week beofre he does anything and if I am still having the same pain next week he will try some injections.

    Not sure whether I should call back and remind them I am 7 weeks or not.... Either way is not much of a difference.

    I will probably call them back just for my piece of mind. Not to mention I need to see if they will revise my work release. On Monday I called in because I was in so much pain and when I came back to work on Tuesday my work told me that because the doc released me with no restrictions that any time I miss will be counted against my attendance because he did release me without restrictions. What is an average time to take off after a procedure like this? I was off 5 weeks but started working from home off and on after two weeks.

    Ahhhhh! What a frustrating mess.
  • First thing is I would suggest you call and ask the doctor to place some restrictions. Like be sure to get up and move around frequently, wear a headset when using the telephone, limit looking down while using your computer, no lifting, etc. You are only 7 weeks out, and it takes months and months for fusion to take place. I applaud you for being back to work, but there should be some restrictions in place. Let your doctor know you are worsening after returning to work, being clear that you need to continue working but that you need some restrictions in place for when you can't. I know someone who went on with life with no restrictions and ended up being stupid, took a ouple of falls doing things she shouldn't have been doing, and is now facing a revision because the fusion site "broke". Apparently at the previous xrays it was healing nicely, the next one shows a crack where the fusion stopped.

    The pain you describe sounds like a combination of nerve pain and muscle spasm pain. I agree with the others on their suggestion about a muscle relaxant. Also, normal pain meds don't really touch nerve pain, as you know. It may be a good idea for you to visit with the Pain Management doc in your surgeon's clinic for some help.

    Good luck, and I am so sorry you are going through all this. Unfortunately I am living with this type of pain right along with you. Learning how to manage pain before it manages you is key to your future.

    Cindy

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Another quick question...

    Did any/all of you experience quite a bit of swelling on the back of your neck? On the left side of my neck I am still getting quite a bit of swelling. There is a lump/swelling, whatever it is, all of the time but sometimes it swells up pretty good and then will go back down after a while.
  • I didn't have any swelling with either operation so I really can't help you there. As far as recovery goes on my first operation I was out of work for 12 weeks and still wasn't ready but had to go back fearing losing my job. My second operation the doc said will take even more time.
    I drive a tractor trailer and do heavy lifting
    Good luck to you
  • well as you read everyone's posts to you it shows we have different pains and recovery.i had c4-6 Nov 13 /08 i took it easy for 10 weeks out of surgery. was very active like you but resisted to lift anything or move fast. just a lot of walking. at ten weeks i started exercising with the total gym very light level about 10 lb resistance did that til my arms got strength back. i wanted to recover the right way. slow and steady. you have to keep in mind all the time that your neck is only held together by screws and a plate for now any strain can screw you up. my shoulders hurt for quite some time. its been only 3 weeks since the aches went away and i just have weakness in my arm. i went back to work on march 2nd as a mailman which isn't easy. as much walking i did before i went back wasn't enough. legs, feet and butt hurt for weeks. as for your job not moving at your desk is worse. your muscles tense up sitting in one place. and as for lifting that child your chancing problems. but sounds like you aggravated your weak muscles and that's why they burn and hurt. had the same symptoms when i was working out . did it to much at one time and paid for it. just give it time and relax.
    as for the knot in your neck have some one rub it out. its probably from the position they put you in to operate. that may be most of your problem!!
  • I just called back and talked to the nurse. I told her that I must have been having a really good day (or really good hour :)) when I went to my follow-up before coming back to work because as of now I never would have even came back full-time, let alone without any restrictions. I do contracts so I am constantly just staring at the screen for long periods of time. Not that that is a physical job by any means but with this type of surgery it seems as though any job would put you in pain. I try to get up and walk around every hour or so but within 10 minutes or so after sitting back down the pain is right back. I went home Tuesday and just cried because of the pain and keep telling my husband I wish I could just quit working, which is not really true because I am pretty independant but this pain makes me says things that I do not mean.

    I told the nurse I needed to have my work release revised because my company was going to count any time missed against me unless they revised it, She said she would have the paperwork revised and back to me Friday or Monday.

    Also she said she said 5 weeks on my vm but she and the doc know I am 7 but he still wants to wait to do injections until next week. He is pretty conservative, which is good most of the time but right now I am inpatient...
  • Well I decided to cut my hours back at work, which the doc seemed happy with, he is probably sick of me calling him :). Luckily I have the ability to work from home so I am going to limit my hours in the office and work from home when I feel up to it. The doc said he is happy to revise my work release. I am calling him now to get that taken care of and also to ask about some muscle relaxers. If this pain is mostly from muscle spasms and/or nerves healing or being damaged I could be a new women with a little extra rest and some muscle relaxers. Today has been one of the worst days at work yet I feel like I have been beaten with a bat and am counting the minutes till I can leave....
  • why in the world would a doctor fuse your neck at age 29 with a degenerative condition when they could do an ADR?
  • your right about docs being old school and don't think outside of the box and that can ruin a young patients life..
  • Yes actually just turned 29 two days before I had the surgery, and I am not sure. Until I started reading this forum I did not even know that was an option.

    I am to the point that I think most doctors are taught a certain way and when they see this they automatically think ACDF, whether they have been told otherwise or not and this is a procedure they are comfortable with. I just know that with the pain I was in preop I jumped at the thought of it going away and did not do as much research as I should have on my end. He seems to be a really good doctor and came highly recommended but sometimes I think they are old school and don't think outside of the box sometimes, no matter how good they are.
  • It is scary and frustrating as hell!

    I think i would have had the surgery regardless of what I read and researched for the hope mine would turn out good. Which he did not give me any unrealistic expectatons. He told me this was going to help with the arm and shoulder pain, along with the tingling and numbness and let me know that it may not, it was kind of a "we hope this does the trick" kind of thing. I just did not know I was trading one problem for another, arm and shoulder feel great but now my middle back hurts, which I have not ever had back pain in my life, and my shoulder blades kill me.

    I have to say today has been a really good day though. I am not sure if it is because I took my pain meds before it started and got to the point that I was miserable or I am just having a good day.

    I just wish I would have known there were other options. All's i did was research the procedure I was told I was having because I had no clue there was anything else that could be done, other than conservative treatment which I had already done everything under the sun.

    Oh well, I will just keep hoping for more good days :) it is about all I can do, what's done is done.
  • I figure if surgery does not work for me then I might have to just become a hardore drug addict...I hope it never gets to a point where suicide is my only option left..nice to hear you had a good day dont give up yet....
  • JKDE302 have you not had surgery yet?

    And I hear ya, it is never bad enough to think suicide is an only option but I can see when people are in chronic pain they think things that they normally wouldn't, it is scary to think I, or anyone for that matter, might be on painkillers forever but at the same time I can't imagine not having them right now.

    Everytime I call to get a refill they lower the strength I am taking, which I understand if it is a person that is out of surgery and not having any problems, that is probably normal protocol but I am having pain still and the more they lower it the less I can function.

    I have to call my doc back this week to give him an update so we'll see.

    Things will get better for you, soon I hope. :)

    PS - Just called the docs office and talked to his secretary about refilling my pain meds and making it something stronger. She said she has to talk to him and then will call me back and let me know. Why, even being in pain, do I feel bad asking for a refill on my meds. I think it may be the fact that I have to depend on taking them to feel better and be able to do anything! :( I am so annoyed with myself today!!!!
  • Hi Mel I had a 3 Level ACDF on 1/13 and I really did not start feeling pretty good until about 12 weeks. So hang in there hopefully you will get to where I am. I just started PT and mostly pain free (most days good some days not so good)...
  • Thanks for the encouragement. I am looking forward to those days. It seems like every morning I wake up with a new ache or pain. This morning the back of my head/neck hurt so bad, at the base of my skull, still does. And those darn muscle spasms! I am still trying to stay positive though, after reading so many of the posts on here now I feel like I am just whining, especially only being seven/eight weeks out. It is just so new to me and hard to understand where it all comes from. Apparently whining makes me feel a little better though :) I feel horrible for everyone that has had to deal with all of these pains for years upon years after the fact. It is draining and hard to get others (friends and family) to understand why you feel so bad and why you do not ever feel like doing anything. If I put mascara on and try to look half decent my husband thinks I am back to normal and ready for a night out :)

    Is it normal to have tingling and numbness down the side of your neck and trap muscle area? I have been assuming this is just healing again but not sure.
  • I remember having to sign something when I started with this doctor that stated I wouldn't be able to just call in for more pain medications, but would have to wait till my next appointment.

    It's this crazy fine line with those things.

    All these pills are just messing with my moods. They have given me Tramadol (dizzy & nausea 12 hrs after taking 1 pill) Darvocet (dizzy & depressed), Flexeril (didn't think it did much) and Zannaflex (seemed useless).

    They have prescribed Gabapentin today. I was also taking Valium which was nice because it relaxed my shoulders more than the muscle relaxers which helped with this pain across the shoulders and back. I got my last refill for those today, because in the doctor's words they are not for "long term." At least I felt relaxed and somewhat happy with the Valium.

    I understand the "guilt" you feel about needing this relief!

    So now I'm 17 days from the ACDF and I'm planning on going back to work on Monday to my desk job.

    Hopefully, Tylenol and a small amount of muscle relaxer will suffice. It will only have been 3 weeks, but I just can't afford to use up any more vacation/sick days. Plus, I keep getting all of these emails from everyone at work on how much they miss me. I can only imagine the piles that need to be taken care of!

    Guess I'm just worried that I won't be able to function to full capacity from both the pain & the fuzziness from the meds.





  • Things just seem to be getting worse so I called the doc Friday and am scheduled to see the pain management doc today. He is going to give me some type of injections. I am not exactly sure what they are but the nurse said it would all be explained to me when I get there.

    Hopefully it helps, I am sick of being in pain 75 percent, if not more, of the time.
  • this makes me sad....you are only 29....give it till 12 weeks if its not getting better then see a new doc....in the mean time get some light massage and go to a gym where they have exercise bikes that support your upper back, neck and head b/c its not good for your health to get immobile.....

    when im depressed about my neck it makes the pain worse the less active I am...
  • Well I went and got my epidural yesterday so we will see. I was scared to death! he said we would not know whether the steriods would help for at least 7-14 days. I did not even get an epidural with my two kids because I was so scared of them sticking something in my back/neck like that. The PM doc was awesome though, I really liked him, not too mention he was cute too ;-) LOL. He told me he hopes this helps but there is really no way to say for sure. He is in the same office as my NS and they all seem to be pretty honest about what to expect, no one has yet to give me a false hope.

    He said he wants to see me again in three weeks to see how I am doing. If it doesnt we will have to explore other pain management tools/meds. I am not banking on it working by any means, just hoping it does.

    JKDE302 - Yes it does suck that I am only 29 and have had to go through this but it sucks no matter what age you are really. You have to take it as it comes and delaying things will only make it worse. I am glad they found it all now instead of five to ten years down the road when it would be a lot worse. I think the key is finding a doc you trust and having a good support system, whether it be friends and family or us on this forum.
  • The first two weeks I came back I started back to my regular schedule, which is normally 45-50 hours a week. Boy was that a bad idea! I was off work for about five weeks and then I had used all of my vacation, personal time, and medical leave pay so I had to come back. And I have a great boss as well and thank god she is as understanding as she is. She saw the pain I was in and said I should back off my hours so I did and am only in the office 25 hours a week and then take my laptop home and work from home off and on. I was so scared the first week, the pain was horrible and I just kept thinking, how in the world am I going to continue to work a desk job, I was close to tears half of the time I sat here! But just get up, often, and walk around. And see if your work will order you a back support for your chair, or if not you should invest in one, they really help so you keep better posture. I make sure to get up at least every hour and walk around the office or outside for 5-10 minutes and it seems to help. And if you answer phones a lot, get a headset for sure. My work told me to take off as much time as I needed but I had to come back as well, two kids, a mortgage, and two car payments dont like to wait whether I feel bad or not ;-). Also make sure your computer is on something so that it is at eye level. I got a lot of stuff from my PT guy on correct posture at a desk and how things should sit on a desk, I will PM you and send it to you (if I can find it... :)), if not you can look online.

    Good luck to you when you go back. And the first few days were the hardest for me, not being use to sitting that long. Make sure you take your meds as the doc tells you even if you feel fine sitting at your desk. I made the mistake of feeling pretty good one day so I thought I would skip my pain meds and by 2pm in the afternoon I was in so much pain I could not get it back undercontrol and found myself in intense pain. And it is not to scare you, just know what you can do to prevent more pain than necessary because sitting at a desk after this surgery can be unpleasant if you dont move around.

  • Hi all...been trying to read all posts and it feels good that I'm not the only one. I had acdf c4-5, c5-6 on 1/18/07. I got a neurostimulator with leads on occ. nerves and in neck tissue on 1/12/09. I would like my pain level I had 6 mos. ago, a year ago, and 2 years ago. It's unbearable- I can barely function, had to quit working 12/07. The pain originated at base of skull in 2001 and remains there 24/7. My whole back of neck throbs deep and then it travels up back of head. Arm numbness and weakness got better post-op. I am never out of pain. I'm on 4 norco's a day (10-325), flexeril, lexapro, valium, celebrex, and buspar. I am a 39 year old woman who has worked myself to this point. I did construction since I was 16. Actually, I went back to work 4-5 months post-op and don't have any clue how I did. Now, I can't handle the weight of my head just to fix a meal. I'm on ice to numb my neck and vicoden is about as good as advil by now. I'm going to in dr. tomorrow and he wants to check out the atlas and axis (1st and 2nd vertebrae). Besides more spurs growing and c3-4 and c6-7 bulging - Something has to be misaligned up top. Anyone dealing with this? Wish I could spread good, positive feedback but I just get worse every 3 months. Swore I would never take oxycontin but I'm at that point I may say yes tomorrow. I hope the best for everyone in this forum - we all can relate to the chronic pain and anxiety. I wouldn't wish this on anyone, just wish they could feel it for 5 mins. and they would understand. I'll keep y'all informed of any successful tx's.
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