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living with an occipitocervical fusion



  • Hope everyone is well. Just wanted to add my experience to the mix as I had an occipitocervical fusion on 2/2/15. I just passed the four month mark last week. My fusion is from a plate on my skull to C2 and C3.

    Prior to this I had an Arnold's Chiari Decompression surgery by the same surgeon on 8/20/13. I recovered pretty much 100% from that surgery and was back to lifting weights and started mountain biking prior to the symptoms of the C1 leaning back in to the brain stem starting. I will say that this surgery took me six months to get over the nausea that, as I was told, was due to the surgeon operating so close to the nerves in the back inside of the skull where the nausea nerves are. Some was due to generalized stress, but I feel it was mostly just a healing thing and it would take six months like they said. For someone who was used to lifting weights 4-5 times a week and going to lifting 0 days a week...there was some anxiety of what to do with myself when I needed an escape from the situations we have in every day life.

    As far as my last surgery, I have been having trouble with my neck muscles getting tight and trouble swallowing for a little while since surgery. I assume once everything calms down and the muscles grow back and get used to the movements, this will subside. I have also been told that some of the trouble swallowing for me and the neck muscles getting tight in the front of the neck were part of anxiety...which I have had some anxiety my whole life. I went back to work two weeks from the date of surgery (office job), but after three or so weeks, it became too stressful and I took two more weeks off. I was not in a collar after surgery. My advice to anyone is to take plenty of time prior to returning to work but stay busy with something you enjoy doing at home...reading, etc. If I had it to do over again, I would probably stay out longer, however, my doctor said to return when I felt comfortable.

    I'll post a little more later, as I can get to talking too much. One thing I would like to see in the future is a resource group or organization that can provide a little more post op information for these surgeries (I know it would be difficult since every person/situation is different)....if there is anything out there, please let me know. It gets to be a little concerning working through this without a guide of what to expect. Guess that's why we wound up here.

    Oh, and they went in through the back of my neck both times...the fusion maybe 1-2 inches more of an incision.

  • Hi there,

    Just thought I'd say welcome too. It's good to have people together even though we are a small group. Have you found any alternatives to lifting weights and mountain biking or is it something you're going to look at getting back into?

    Just replying to your earlier message Pat, I had a goal setting meeting at my rehab place this week, one of which was returning to driving, so yes, it should be coming up in the not too distant future. I've found out you can order reversing cameras which don't seem too hard to fit, as that will be very helpful, and ordering/fitting convex mirrors doesn't seem to be a problem.

    I also find myself thinking about my physical state 99% of the time. I have lots of injuries and am focusing on walking again, so that at least gives me some distraction, but I think most of all about the neck issue which isn't really going to get any better. Anyway it's good to know you can get around things and again, like you say best to keep yourself busy rather than think things over.

    Hope things are going well with you guys.
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  • Accidentally posted the same thing twice, as it didn't look like it had saved my first one, so have just updated this second one!
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 106
    Welcome to the gang! I agree with you that it would be nice to know more before the surgeries. I also found this site after. One of my surgeons had told me that what I was going to have was life changing, but you can never be fully prepared. I had decompression surgery for a condition called basilar invagination followed 3 weeks later by an occiput to c4 fusion. I don't think anything could've prepared me for what was coming. The scar is just a reminder of how tough and willful I am.
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 106
    I'm sure glad to see that you're going do do something about the driving Gareth. Yes, I would love to have one of those cameras but I'm pretty good at using my mirrors to back up. In all honesty though, I've bumped in a few cars since then but with no damage. Next car I'm getting (in 1 or 2 years) will have the backup camera and the blind spot detector. The convex mirrors are also very useful. Taking action to get back to life as much as it was before is good for us all.

    Take care!
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  • Thank you for the welcomes. I'm about 20 weeks post-op now. Still having the good and bad days but have had a few good days lately that reminded me of what I used to feel like prior to all of the surgeries...those are very encouraging.

    Gareth, I have not found much alternative to weight lifting or mountain biking, yet. I may try road bicycling in a few months. For the past couple of weeks, I have not gone to the physical therapist for the soft tissue massage as much as I had been because I didn't feel that I needed it. I have mainly just been working and trying to do some light things around the yard...try not to do anything too jarring or stomp around (lol) as I can feel the fusion. This week I did 5 pushups on Monday and Tuesday evening along with 10 squats and a couple lunges...I'm feeling the push-ups in my neck seeing as how I have not done anything like that in close to 7-8 months. My PT said I could do push-ups probably two months ago, but I waited as I am nervous about exercising. My physical therapist also told me yesterday that he didn't remember my neck being that thick and that there was some puffiness around the back of my neck (where the incision site is)...I guess where the muscles had tension put on them while doing the push-ups. With that said, if I do get back into lifting weights, I will have to change the way I lift for a while and not be concerned with lifting heavy weights...just lift for overall wellness.

    I think after this bout with the push-ups, I may just stick with lower body exercises and nothing strenuous and just take more time....maybe a month or so before I get back to doing them. I'm nervous doing exercises given the symptoms that triggered me going to the doctor for both the chiari and fusion became more bothersome with exercise. It's taken longer for me to get back to working out this time than when I had the chiari decompression surgery, however, I have to remember that they are two different surgeries...and it's not meant for me to work out like that at this point.

    Other than that and just general stress from work, things have been going well. A coworker told me the other day it looked like I was moving my neck more so that is a good thing.

    I did have an x-ray about a month ago and sent it to my doctor for review. The fusion is looking well and he said I could do any activity I wanted to (I mainly asked about a deep tissue massage due to good reviews of a local masseuse and how their back, shoulder, etc. was better after a couple of visits.). I did mention that I had some trouble swallowing and my nurse (whom I was e-mailing) said that the trouble swallowing could be persistent up to 6 months and that as long as it wasn't getting worse and I was making some progress.

    That's about the most that has been going on with me lately. I'll try to keep you posted as things go.
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 106
    Hey KTMGuy! Glad to see things are progressing, but please don't do any upper body weight lifting. I don't think it's a good idea for any of us. Push-ups are fine but I didn't start doing them until a year after my surgeries. Never done more than 25 since because I find it too strenuous on my neck. I used to do shoulder flys before my surgeries and would always get shocks when I lifted my arms. Tried some about a year after with very light weight and after a few of them, I had to stop because I was starting to get the shocks again.

    A question to all of you guys. I have a big lump at the bottom of my neck incision. It is more prominent on one side of the cut than the other. I've had it for as long as I can remember after my surgeries. Any of you have the same thing?

    Catch up later! Take care!
  • KTMGuyKKTMGuy Posts: 5
    edited 06/30/2015 - 3:58 AM
    I do not have a lump on the base of my incision site. The only thing I feel is my spine there...however it seems that it can be more prominent when I bend my head downwards. I think this is normal as I have always (as much as I can remember) had that there.

    Is your lump a hard, bone, lump or is it like a lump where some of the skin healed together after the surgery?
  • Diane,

    How is the recovery going?
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 106
    Is your lump a hard, bone, lump or is it like a lump where some of the skin healed together after the surgery?

    To answer your question KTM, the lump seems to be tissue related. Like I said, it's more prominent on the right side of the incision. You can easily see it. :( But it's only esthetic so I shouldn't complain.

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