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Considering c5-c6 acdf, but worried

hilojannahhilojanna Posts: 28
edited 06/11/2012 - 8:43 AM in Back Surgery and Neck Surgery
hello there,
I am new here and am considering having c5-c6 acdf surgery soon. I keep putting it off because I am wondering if the pain will go away by itself. It has already been 3 months of pain, and some days I just cry myself to sleep, although other days it is manageable. I know crying to sleep is not normal, and I have sort of forgotten what it was like to live without any pain.
Dr recommended I have surgery, and he said it is my call, completely up to me. I am worried about so much. Will the surgery improve pain? How long will I be in recovery? Will I be able to do the things I used to do, surf, run, play with my dogs? How soon after will I be able to travel (I have a trip planned four weeks after he can schedule). Dr says I will be fine by then, but wanted to hear from someone who actually had surgery thinks of that.
I see many of you would do it again in a heartbeat, but is that only because your pain was worse than mine? What about following surgeries, is that always necessary?
Appreciate any insight you may have...


  • Hi Janna,

    First let me say welcome to spine-health. Have a look around and you will find many whom are going through are going through what you are. The decision to have surgery is always a complicated one. The biggest problem is there is no guarantees with surgery. What you need to ask yourself is by not having surgery what is your quality of life and what things could you be risking, like permanent nerve damage. For myself the decision was made for me when they said I would risk paralysis. Have you sought a second opinion? What types of conservative treatments have you tried so far? Are you using any medications to control the pain when it is bad. What I see most of the time is people choose surgery when the pain no longer goes away, but then again you maybe risking nerve damage.

    As far as how you will do following surgery is just the unknown. I can tell you for myself and many here I woke up with the worst pain gone. I could once again feel my arm. From my understanding if the pain is radicular and not just isolated to your neck they have a higher chance of making it stop. As far as returning to your normal activities I think it is possible, but it will all depend on the surgery and the general over all health of your spine. Adjacent disc disease is a problem without a doubt, but I have seen plenty come have surgery and are out living normal busy everyday lives.

    I think the most important thing you can do is research your surgeon and have faith and confidence in his/her abilities. I myself have been fused from c3-c6 and am glad those surgeries were done.

    I just thought I would stop by and welcome you to spine-health and if there is anything I can do don't hesitate to pm me. Take care.
  • Hi Tamtam,
    Thanks for the reply.
    I have tried PT, chiroprator, massage, and all sorts of pain meds. Lyrica, Neurontin, meloxicam, tylenol/codeine. This time around I have gone to 4 weeks of PT with no improvement whatsoever. Massage helps for a couple hours, but pain returns. I have pain, tinging, and numbness in my whole arm and hand. It is sometimes unbearable, and that in turn makes me intolerable. I have an appt for a second opinion, but not for another few weeks. I almost just want to get the surgery done now, because I just can't stand the pain anymore. Do you think a second opinion is absolutely necessary?
  • Howdy Janna,

    I've sent you a lengthy PM. :-) Glad to see you have figured out how the forums are, and posting. Welcome aboard!!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I have heard that my dr (ortho/spine surgeon) is good/known, but I really don't know anyone who has had this done by him, nor would I know if the second opinion dr is any good either.
  • I just had ACDF on C5-7 11 days ago. I decided to have the surgery after my 1st appt with a neurosurgeon. I was told by my primary doctor that this neurosurgeon was the best in the area and he is suppose to be the most conservative neurosurgeon that accepts my insurance. I waited 1 month to see him and scheduled the surgery 2 days after the appt. I had compression of both my spinal cord and nerve roots. If you are confident in your surgeon and ready I would say go with your instincts, but it is YOUR choice and no one can tell you what you should do. If you have any reservations then there is no harm in getting a second opinion, most will tell you to do so. I was told that I could not wait as I was already getting symptoms in my legs and if I had an accident or fell I could be paralyzed so I figured once that is a outcome that could happen I would never forgive myself if I decided to hold off on surgery and something happened that could of been prevented.

    You're not alone as you can tell by this website. I visited this site daily the 3 weeks leading up to my surgery and am on here daily during my recovery. It helps to know others are going through this. BUT, it is your call on surgery and make sure you are 100% ready for it if you decided to go ahead. Good luck and take care!
  • Hi Janna,
    I am a 39 year old female and i just had surgery on Friday, April 16, 2010. I had to have Anterior cervical discectomy w/fusion. This surgery was done on disc C5-6 and C6-7.
    Im not sure if your in for the same type of surgery but I wanted to share my story.

    I have had constant right arm pain and numbness from the tips of my finger to the shoulder. Along with neck pain and pain in the right shoulder blade area. My pain started in November 2009.

    I had seen a chiroprator for a few months and there was no relief. (i had a problem with my back before and the chiropractor worked it out but not this time)

    My chiropractor recommend me to a neurologist. My neurologist suggested a cortisone shot. After 3 shots in 3 months and no relief, i felt that my last option was surgery.

    This past Friday I went in for the surgery and i have no regrets at all so far :) My arm that has been in constant pain for 6 months has finally felt better. I would say about 60% of the pain is already gone. The surgeon told me it would take time for the feeling to come back and the pain to stop due to the amount of time the nerve had been pinched. I am compleately surprised that it feel that much better already.
    They made an incision in the front of my neck removed the two bad discs, replaced them with donor bone that is cut to fit in between your vertebrae. Then they used a plate and 6 screws to hold it inline.

    Within 6 months this will fuse and be stronger than ever.
    I can't believe how good I feel after such a major operation. It took about 3 hours in the operating room and a day in the hospital. But i feel amazing. I will be limited to heavy lifting for about 6 months but due to the location where the discs were removed my range of montion will return and i will be good as new, if not better :)

    Also I am going to Mexico May 4th, that is 3 weeks after my surgery. My doctor said I would be fine to fly.

    Last night I took off the bandage and the steri strips will come off on there on in 8 to 10 days. I have a soft collar I were in the car and to bed.

    The doctor said I could drive and go back to work once my neck pain was gone and I was off the meds.

    So all & all i wish I did this alot sooner.

    Best wishes to you and I hope my super long message helps you.

    Good luck to you.....Darlene
  • Thanks Jen,
    I almost wish that I didn't have a choice, because the decision is so hard for me. But I think I am going to try to schedule. Life has not been "life" since I've been in this pain! Hopefully the surgery will help.
    Thanks for posting!!
    Hope you are doing ok. 11 days sounds new, and how are you feeling today?? up and around, or still in bed?
  • I can only imagine the decision would be very difficult, but I agree live is short. I myself am 29 yrs old so I knew I would have to do this at some point :)

    I am doing great actually! I have not taken any pain pills today, only Tylenol :) The first 3-4 days after were painful and I was a bit nauseous as my surgery took 4 hrs and my throat was really sore for about 8 days after. Now I have some muscle pain on my right arm/shoulder blade every so often but other than that I am doing really well. I am even trying to do squats in my living room and walk everyday:) Keeping my neck very still of course. I am still in my brace for another 5 weeks which is not comfortable but it could be worst! :) I have my post-opp on the 28th so I am just hoping everything held and the fusion has started.

    Keep me updated on what you decide and if you get a surgery scheduled. Good luck, all will be okay! :)
  • WOW, sabbycat! Your story sounds almost identical to mine! Same kind of pain, same area. It's great to hear you are doing so well!! I can only hope that mine will be the same! Please keep in touch so I know how you continue to progress! Especially in regard to your travel. I have a trip planned, and was unsure of how that will go, even tho the dr says I should be fine. it'll be 3 weeks post op, if my surgery gets successfully scheduled when they plan to schedule.

    Jen, do you feel like you could be traveling in the next week or two?

  • Hi Jen,
    i hadnt seen your earlier post. You're doing squats? Wow, you really are doing great, huh? I am so happy to hear it.
    I am trying to schedule for the 2nd week in May, it's the earliest my dr can. My trip is planned for very end of May. So hopefully by then I'll be good to go. Dr says it'll be fine, but still I worry.
    Glad you're feeling better. Keep in touch so I can see your progress!! It's so good and encouraging to hear!
    Keep upbeat!
  • I think 3 weeks post-op would be a bit early for me, 4 weeks would probably be great. BUT honestly, everyone reacts to surgery differently. Have u ever had a surgery? I am stuck in a hard neck brace for 6 weeks straight so that is my only reservation. I have heard many doctors, like Sabbycat, only have patients wear a soft brace and some only wants you to wear a hard brace when driving or in a situation where you could fall. Mine was admit that I wear mine always for 6 weeks and not move my neck. It is different per doctor and different per each patient. I would defiantly ask what your doctor will ask you to do...

    I am going to try to go to a baseball game Friday so to do that I will have to take public transit (train) and sit in a stadium seat for 2-3 hrs, that will be a good test :) I defiantly get a lot of stares and "what happened to you" eyes and a lot of doors held open :)
  • Yes, I was trying for surgery the first week of May, but Dr is all tied up because he is traveling the week prior. Anyway, he did say I would not need a collar at all. (???) So, I don't know. Although I would think I'd feel a little more secure with a collar, don't you think?
    I'm happy that you are feeling better and well enough to venture out. Let me know how it goes at the game! Stadium seats aren't that comfortable, even without a neck injury! haha.
    Take care and keep in touch.
  • I didn't think about this before but if you are getting 1 level done I think it is very common for Doctors to say no collar is needed. I had 2 levels and I am guessing my spine had stability issues. If you are more comfortable with a collar I think you can get a soft collar at Walgreens or something like that. I think it will be good to keep your muscles in your neck strong too and everyone on here will tell you to listen to your doctor as he/she does know best :)

    I will let you know how Friday goes, should be interesting.

    Good luck and keep posting, it does help! :)
  • Thanks Jen,
    And you're right, I am having only one level done. Hopefully sooner than later.
    Yes, please let me know how Friday goes! And I hope you have FUN!
    Take it easy!
  • SpineAZSpineAZ WiscPosts: 1,084
    My ACDF in 2006 is one of the best surgery decisions I every made. The surgery was actually easier than any lumbar surgery I had and my recovery went pretty smoothly. I made the mistake of being too sedentary so I was supposed to travel at 6 wk but with my Aspen collar and being deconditioned I decided to cancel the trip. The collar was the majority of the reason.

    Can you do it after your trip?
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • SpineAZSpineAZ WiscPosts: 1,084
    I'm only providing this to let you know it has worked well for me in travel. After having neck surgery I wanted to be sure I could always nap on the plane and not move my head too far while sleeping. I found it very useful right after surgery when I no longer had my Aspen collar


    This made travel for me better back when I had surgery and even this past week I traveled to Chicago and this trusty little item is always in my carry on.
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • Hi SpineAZ,
    Thank you so much for your info!
    I will look into this collar. It looks comfortable.
    I have a trip planned end of this week, which will probably be horribly uncomfortable, but was unavoidable. The next trip was already planned for end of May. I asked the dr what he thought, and he said I should be perfectly fine going 3 weeks post op. We shall see. I'll see how I feel after this trip.
    Thanks again for your info. I appreciate it a lot.
  • Welcome to Spine-Health.

    You've gotten a lot of good information and experience here, but one thing I want to mention is that if your doctor doesn't want you to wear a collar, then don't run out and get one like Jenb said before talking with your surgeon.

    As you know, spine surgery is a very personal decision and most of those that have had one (I've had both a cervical and lumbar surgery) have had much success.

    But what's important in your decision-making as well as some of the other things said here, is how much trust you have in your surgeon and once you decide to have surgery, following your doctor's orders. There could be a very good reason he doesn't want you to wear a collar so please don't undermine the surgery by following anyone's advice without first talking to your surgeon. He or she should be the one that ALLOWS you to wear a collar, do exercises, travel, and any other post-op activity.

    Take care,
  • As I said, "your doctor know best".

    I actually just went on this site SpineAZ and bought one of these collars and a neck therapy wrap, thanks for that info!! I have a feeling I will sleep in this once I get cleared to not wear my hard neck brace anymore :) Thanks SpineAZ

    One thing I did not mention Janna is to be prepared for throat discomfort, everyone handles it differently but I could not eat for 4 days after. Lost 10 lbs but by day 5-6 I could manage to eat almost anything if I chewed everyone many many many times :) I still have minor discomfort but it is expected to slowly go away. Good luck Janna and remember to ask as many questions as you can, no question is a silly one! :) If you have any questions for me just PM me.

  • Hi folks,
    Just wondering how much help you all needed after surgery? And for how long?
  • I had a decompression on 3 levels and a fusion on 1 level, in my lumbar spine.
    I had read that I would need help for the first two weeks home from surgery, so my husband took 2 weeks off. I have had a particularly good recovery, and could probably have managed earlier, but I really appreciated the help and love!

    Wishing you well.

    Just remembered you are talking about a cervical surgery.
    I believe the recovery for that is much quicker.
    Someone else will post about cervical recovery :-)
  • I had help set-up for at least 5 days after I got home and after that I was on my own and managed just fine. You will defiantly need to make sure things that you need are within reach, meaning not on the highest shelf or lowest. Also the best thing I bought before surgery was a recliner and bendy straws. I am not sure how I would of managed without the recliner. Do you live by yourself or will someone be around at night? I think you will be able to manage after about 5 days if you are only alone for 8 hours or so.

    Hope that helps!

  • Hi Jen,
    Thanks, yes, very helpful. I do not live alone, and will have help at night. I was just wondering if I would need my mom to come over and help me. She lives away, but said she'd come if needed. Maybe I'll just try to manage without her. =)
    I do not have a recliner tho, and am wondering if I should get one. Is the bed too hard to get in and out of? Or what's the prob with lying in bed?
    I did see the huge list of "things to get" after surgery.
    THanks all!
  • Hi Janna!

    My father also lives about 6 hours away and he came up to help out the first couple days, but I also tried to schedule my surgery close to the weekend to help :)

    I was going to try and manage without a recliner also as we live in a somewhat small apartment, but my dad went out and got me one the night of my surgery and to be very honest it is the best gift I have ever received :) I actually slept mostly in the recliner the first couple nights. I have also bought a pillow wedge for the bed so my head is elevated when I want to lay in bed. It will be hard to pull your head up or put it down on it's own, I use my hands to help most the time. I am now almost 2 weeks out and am finally able to lift the weight of my head on it's own. As of today I still cannot slept with my head all the way level, my issue is not necessarily my neck, but my throat. It seems to get harder to swallow the lower my head is. Also the first couple days after surgery your neck, front and back will be swollen causing pressure on your throat. I also have lower back pain when I am laying around too long and the recliner helps that also. I also have an issue with C4-5 which were not fused at this time but will be likely that I will have to do this all again in the next 5-8 years (hopefully that long) so it made getting a recliner a good choice for me.

    If you can afford it and can fit it in your place I would get one. BUT that is your choice. Maybe someone else will post about how they went through it without a recliner or sorts. I know I read a lot of posts before my surgery about many people that used a recliner so maybe search to see how people managed without as I am sure there are ways :)
  • Jen,
    Recliner sounds like a good idea then! I also live in a small-ish house, but I suppose I could fit a recliner somewhere later, after it's out of my bedroom! Maybe one of those smaller ones.
    thanks for all the great info, and yes, I was also going to try to schedule it so that I go home on a weekend, so I'll get 2 days of attention, at least.
    What kind of wedge pillow did you get, or is any sort ok?

  • This is the one I got, it's a bit hard but I kinda like it on the firm side.


    I love amazon, so i just looked for one that had good reviews and was priced right :) Hope that helps!
  • Hi Jen!
    Thanks for all the great info.
    Hope you are doing well today!
    I was back to work today, but scheduled my surgery for 5/5. So it's count down time.
    Still worried, but oh well...
    Thanks again for the support. I appreciate it a lot.
    Thanks all!
  • If you cannot fit a recliner into your house, you might get a Bed Wedge. I got one from Amazon which is 12" x 24" x 24".

    I also have a recliner, but I preferred to sleep in the bed with this wedge. It also is less distance when doing the "log roll" to get in and out of bed. After the first couple of weeks, you should be able to sleep without the bed wedge.

  • Thanks gharmen.
    I appreciate your info.
    The more info the better, as far as I'm concerned. How are you doing now after 1 month?
  • I just got back from my six week post-op visit and I am cleared to drive with the new medications. I forgot to ask about lifting restrictions. Left a message with the receptionist before I left. Doctor will call back later today with that information.

    Overall, going well. X-rays show fusion is progressing. I still have some of the original pain. They indicate this is to be expected while nerves get better!

    Just remember, everyone's experience after these surgeries is different. I can only tell you about my experiences.
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