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Need encouragement

S for StacySS for Stacy Posts: 35
edited 06/11/2012 - 7:53 AM in Recovering from Surgery
So, I don't know if this has to do with my surgery or even if it has to do with my spine, but I've been having headaches that spread into my neck (or vice versa) for three days. Ended up having to go to the urgent care clinic on Thursday night to get a shot (Nubain and Phenergan) it was so bad. Threw up twice.

Anyway, it wasn't so bad yesterday, I was just so hung over from the shot I slept a large chunk of the day. But today it's starting back again (hopefully it won't get as bad), and I'm just discouraged.

I know my spine doc said I'm in the early stages of post-op recovery (now into the 4th week post-op), but these head/neckaches are so much like the ones I was having that drove me to have the surgery in the first place.

When I sit, sometimes I get this pain that seems to come from my shoulder and shoot up into my neck and head. Thought this surgery would take care of that. Now I'm wondering if it isn't something lower spine related (I have similar probs in my lumbar spine that I did in my cervical spine -- degenerative disks, compromised spinal cord -- but I really, really DO NOT want to have to have surgery again, especially if it involves steroids, which make me have weird heart probs like atrial fibrillation.)

I just feel like I have no life. I know I'm very blessed in so many ways, and have things much better than a lot of people. I'm just having trouble accepting that pain is to be part of my life from now on. Just super depressed.

Sorry to be a whiner -- I know I've posted before, I'm just feeling incredibly low today.

Thanks for listening.
Stacy
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Comments

  • Stacy,

    You are just barely a month post op, and too multi level too boot! Your body is going through a hell of a lot, and will for some months to come - some for more than a year. Your whole spine has to adjust (above and below), your muscles are still most likely in spasms here and there (can easily transmit into megga headaches right there), ligaments are tight etc.

    I think sometimes we ourselves equate our surgery (fusion) similar to breaking an arm or something. That it will fuse, and only that area is affected. I am two levels a little over a year apart and still get base of the skull headaches to this day! Like you, the pain would get so bad, nothing stayed down!! I thought my headaches were coming from my C2/3, but my Neurologist while admitting some probably are, feels most of it is still the changes due to my fusions.

    Remember, forever you will sit differently, your posture is different, the loading and dynamics of your spine are forever changed etc. Our bodies weren't designed for this fusion stuff! (G) Some folks show fusion starting right at their first 6 week follow up, others 6 months, others a year or more! So except for the incision site healing, the bone issues from the surgery are still going on if that helps?

    Try writing down when and what seems to bring on the headaches; maybe sleeping differently (propped up, on your side, back etc.), alternating ice and heat to see if that helps, gently stretching your neck for ROM and helping your muscles and ligaments. Please let us know how it goes.

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Brenda, thank you. I think you're right -- I've heard so many people say, "Oh, so-and-so had that surgery and it fixed them right up!" They don't tell you they had to go through x-number of months of hell before they were "fixed right up." So I do think of it like a broken arm or something -- should be better every day, right? Ugh, apparently not.

    Plus I just ridiculously hate this brace right now. I'm trying to think of it as my "friend," that it's keeping me from messing up all that surgery and helping me stay in a good position so I'll heal properly, but ... anyway, I don't need to just keep whining. It be what it be. Just having trouble accepting that today.

    Hopefully one day I'll be able to look back and see how all this fits together. Right now I'm just struggling through one day at a time.
  • Stacy,

    We all have some cheese with the "whine" as we heal, believe me! (G) Many of us also base improvement (or small back steps) week by week vs day by day. I had times I would go to bed almost feeling like the top of the world, only to wake up like I wanted to die! Just sleeping funny can fubar a day!

    Hell for months and months...very true statement at times. The good days after a while do outweigh the bad. A phrase I hated as a kid, but found through my adult life to be so true (especially with spine and nerve surgeries) "Patience is a Virtue". How I hated that phrase. Now it is in my mantra tool box!

    Whine all you want Stacy, we've been there, done that, and many of us still have the shirt! We get it, so vent away if needed. Gentle support *HUGZ*

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • We have all been there and felt that way at one time or another. It takes a looong time to start to feel better. You had a multi fusion and need alot of time. I know that you want to feel painfree and start to begin your life again. Trust me I do understand. I am just over 5 months and would like to get on with my life to. If you are still wearing a hard collar then your muscles have not had time to strengthen up. They are sore, irritated and have to learn how to support your head. Sounds silly, but it is true. Healing takes time and patience, something many of us have too little of. I wish you a painfree day.

    *************************************** **********
    12/9/2010 ACDF C5-6 C6-7 with plate, screws,
    BMP & bone fragment filled cages
    2/14/2011 trying to go back to work as a teacher
    2/17/2011 starting PT
    wearing bone stimulator 4 hours a day
    DDD, arthritis, herniated disks, pinched nerves
    3 months saw a little bit of bone growth (YEAH)
    4/15/2011 Home Tens Unit
    5/9/2011 new MRI
    5/15/2011 going to a vascular surgeon to
    check out new symptoms :(

    Dealt with the pain and issues for more than 5 years
    tried PT, chiropractic, acupuncture, cervical epidural shots and selective nerve root blocks prior to surgery
  • Thank y'all -- it really does help to have your encouragement. I've had surgery before (appendectomy, C-section, arthroscopy on both knees) and it just seems like each day got a little better than the one before. With this thing, each day is a crap shoot.

    But I do realize that cervical fusion is waaaaay different than the other three I mentioned. I just haven't really had a clue what to expect, as I've mentioned in other posts.

    We went out to a plant nursery today and a woman who worked there came up and said, "Did you have the same surgery I had?" So we talked, and I thought, awesome, she can give me some insight! But one of the first things she said was, "It fixed me right up!" She had a two-level, claims she was in a cast for three weeks, then a hard collar for three weeks, and that was it.

    Maybe she'd just forgotten all she went through. (She did have the scar, so I knew she wasn't making it up.) I guess people have a tendency to do that.

    Anyway, y'all's encouragement has given me hope to go on. I was feeling pretty dark this morning.

    Thank you!!!
  • Stacy,

    I've never heard on anyone being put in a "neck cast" for cervical fusions. What's up with that? Sorry, that's weird. "Hard collar" I get, but cast?

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I thought that was weird. She said her doctor said he "knew her" and that she would probably just leave the hard collar off most of the time. But ... yeah, wasn't sure quite how legit that was. If it is, maybe it was her doc that wasn't legit! lol
  • Stacy,

    My brother (for an extreme example) broke his neck in the mid 70s - 3 vertebra). How the hell he is alive never mind walking to this day amazes me. At any rate, even for that, he was horizontal in the hospital in a halo, no cast.

    Still shaking my head at her "story" to you. A "cast" would not allow her incision to breath, and thus be a major infection risk. I think she might be flavoring her story. Now if her surgery was low (like C6/7) the scar can look an awful lot like some thyroid surgery scars. A friend of mine had thyroid surgery on one half of hers, and her scar is in virtually the same place as my C6/7 surgery - if I didn't know better upon looking, I would think she had a fusion! A cast still isn't making *any* sense to me.

    I also searched the net as this had my curiosity, and that is where the infection deal came up on several sites concerning casting and wounds! The incision has to be able to breath.... She have any pictures? Most of us take pictures for future chuckles (as many are successful, and we look silly in hard collars - gotta share with our friends!!).

    Then the final concern - swelling! A cast allows for none, and many of us have post op swelling. A doctor would risk a person being choked if they swelled? See how this isn't making sense? Still shaking head....(G)

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Yeah, don't know what was up with her. None of that cast thing makes any sense. I'll just toss her story in there with the "It fixed me right up right away, never had any more pain," people.



  • Stacy,

    If she is still pain free, I hope that continues and she never has pain again. :)

    Back on track. How are you doing today and of late? I'm hoping your pain is continuing to back down and get better by each week.

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Well, today was okay. Still having a lot of issues with heart skipping, but I'm thinking that's related to food/GERD issues.

    I think just knowing I can still have those killer head/neckaches has me really depressed. Been struggling with just being incredibly down the last couple of days. I can't even write, which just adds to the depression because I LOVE writing, and I love my story and my characters. Just can't seem to get into it right now.

    Bleah. Hopefully tomorrow will be better.

    Thanks for asking! I appreciate it!
  • Stacy,

    As we've mentioned, it can be months and months of spasms (some converting to sore necks or headaches) as your body adjusts, and heals. I know that sucks, but fusing makes a major change to your spine and related support structures.

    As for not being up to writing, again, fully understandable there. I have my days where I can barely read on the boards never mind post. I use those as days where my body is saying "rest", "let me continue adjusting".... Remember, go week by week, not day by day. *HUG*

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Hopefully you will have more good days than bad days. i know it took quite a while before I felt better. I went back to work at about the 3 month mark. It was really rough the first week. Major spasms and pain. Worked a week then had a week off. I have been back and there are some days that are tough. I still get some major muscle spasms. But just remember are you better now than prior to surgery. Healing takes alot more than than you realize or want it to take.
  • Thanks, y'all. I guess my biggest problem is that I really had no idea (seriously, trust me on this) about the scope of recovery. Or maybe "scope" isn't the right word -- I knew it could take up to a year for the grafts to fully heal. I knew I might be in the cursed brace for up to 6 months. I just didn't realize the healing process would be as sort-of "symptom-filled" as it has been.

    My doc honestly did not give me many details on what to expect, just that it was long and slow. And so many other people I'd heard about said they were "fixed up just fine" (as I've said a few times before), and I must have just extrapolated that, after a couple of weeks of discomfort from the surgery, I'd start feeling like a new person.

    So I appreciate very much y'all giving me the true rundown, because now I know it's just gonna take awhile before I feel "normal" and that's okay. It's just how this thing goes. I don't like it, but as long as I know this is the "new normal" for now, I can deal with that (most days! lol).

  • Stacy,

    I think the big word is "key word", as we all heal at different levels. Joe "cool" could be good to go several weeks outs, another months later, and "Joe Us" a year later!!! I know it is hard, but try not to compare your recovery to that of another. We are different, and heal differently as well. :)

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I just wanted to chime in on what all the others have said here...what your going thru is normal..though our rates of recovery differ. If you happen to be bored one day, read the thread I started in Nov. called 10 days post op...Both Frenchfri and Painfree who are just behind me in surgery have been posting there for a while. It might help you get a jist on recovery issues. Just don't push yourself...Heal on Girl!!! Oh and depression...pull your self up by the bootstraps and don't get in a funk. I know I have and keeping a positive mental attitude helps Heaps!!!
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