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    Old 03-30-2006, 07:47 AM   #1
    Backinthesaddle
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    Post afdf for spinal cord compression

    Having read about every site here over the past 4 years I haven't ran across to many that address post acdf for spinal cord compression (moderate to severe) and stenosis. My spinal cord was compressed for about 1.5yrs to half it size or less by a bone spur and a herniation. It took awhile to get surgery and partly because I got pg inbetween. However here I am 6 weeks post ACDF and still hurt the same as before. I wonder when it stops? I could go and just start lifting weights, riding my horses again I suppose but I do fear how much that will hurt as doing nothing hurts. I have tried 3 different muscle relaxers, 3 different pain meds and honestly nothing works. Even my sleeping pill doesn't work. I feel like I have a constant hangover and icy hot on my left arm from the neck to fingers. My right arm spasms constantly above the elbow to tricep, both shoulder blades spasm with doing simple tasks like snapping my bra, leaning on the counter. I know it takes time, but how long? It seems doctors do not tell you. And those few I know who are post such a surgery tell me they have never been the same. Two were medically retired and one went parttime. Why is it so hard to fix the neck? I go on Friday for an X-ray and I am sure my doctor who is totally flippent will say it takes time. And leave it at that. I really do not have a doctor that will sit and talk to me about this. So I come here for the years of expertise this site has.

    I would appreciate good and bad stories but real ones. I have to get a grip and come to the understanding that there are limitations and would like an idea of what they are..............

    Thanks

     
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    Old 03-30-2006, 10:25 AM   #2
    mb100
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    Re: Post afdf for spinal cord compression

    Hey Saddle,

    I know you've read my some of my posts and you may already know what goes on in my world, but here I go.

    At 6 weeks it's early yet, I know you dont want to hear that. I was still miserable at 6 weeks. But it does get better, at least mine did. acdfouch was miserable at 4 weeks (see his post) but is now seeing progress. Lot's o' folks out there that didnt come out pain free, but most, if not all felt improvement over time. My doc said "no guarantee of being pain free", although he did say that he expected a good outcome. What I got sure beat the alternative, I was going downhill fast. I still have issues, and I'll probably have more comin up, but it's not over and I'm not givin up.

    My spinal cord was compressed about 45% c-4/5, at the time of surgery and to a lesser degree at 2 other levels. My latest MRI shows the cord has partially kept that shape, and is atrophied. So at least some of the damage is permanent.

    Unless a bone plug has moved significantly when you get the exray, the doc will likely say "it looks great". You already know that. If you were compressed that long you already know it will take a while for things to settle down. I know it's hard Saddle, but you have to be patient. It took a year and a half to get this bad, it's hard to tell how long to heal.

    You know my story, if you dont click on my name. I had a very hard time communicating with my first doc as he was Indian. But I went in with a legal pad of questions and plugged away while he checked his watch. My new doc and one of his residents sat down with me for over an hour, it was awesome. I threw everthing but the kitchen sink at them and they answered everthing I could think of at the time. I've done tons of research on the subject, just like most on here so I knew what to ask.

    I hate to give advise, but if the pain and so forth dont settle down in a reasonable amount of time, I would insist on an MRI to see if theres any problems in there. I havent seen to many cases where people got post op MRI's early on. It's always an exray, ya know???

    Meds: I recently went on Neurontin for pain, I am taking a small dose but just increased it to 600 mgs per day. The new doc says I should be at at least 1000 to 1500 mg per day. It does seem to help a little, I'll let you know if it gets better. You might ask about it, it's for nerve pain.
    I also take baclofen for spasticity in my legs, not for pain or spasms.

    Now for my disclaimer........Dont take it from me, I only know from my own experience, you need a pro, if you dont like the one you got, toss him back and go see a new one.

    I will give you one piece of advise without my diclaimer, leave the weights and the horse alone until the doc says so. You could end up alot worse off. Remember you're still in the first inning here!

    Hope you feel better soon

    Take it slow....Mike

     
    Old 03-30-2006, 12:58 PM   #3
    acdfouch
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    Re: Post afdf for spinal cord compression

    Quote:
    Originally Posted by mb100
    Hey Saddle,

    I know you've read my some of my posts and you may already know what goes on in my world, but here I go.

    At 6 weeks it's early yet, I know you dont want to hear that. I was still miserable at 6 weeks. But it does get better, at least mine did. acdfouch was miserable at 4 weeks (see his post) but is now seeing progress. Lot's o' folks out there that didnt come out pain free, but most, if not all felt improvement over time. My doc said "no guarantee of being pain free", although he did say that he expected a good outcome. What I got sure beat the alternative, I was going downhill fast. I still have issues, and I'll probably have more comin up, but it's not over and I'm not givin up.

    My spinal cord was compressed about 45% c-4/5, at the time of surgery and to a lesser degree at 2 other levels. My latest MRI shows the cord has partially kept that shape, and is atrophied. So at least some of the damage is permanent.

    Unless a bone plug has moved significantly when you get the exray, the doc will likely say "it looks great". You already know that. If you were compressed that long you already know it will take a while for things to settle down. I know it's hard Saddle, but you have to be patient. It took a year and a half to get this bad, it's hard to tell how long to heal.

    You know my story, if you dont click on my name. I had a very hard time communicating with my first doc as he was Indian. But I went in with a legal pad of questions and plugged away while he checked his watch. My new doc and one of his residents sat down with me for over an hour, it was awesome. I threw everthing but the kitchen sink at them and they answered everthing I could think of at the time. I've done tons of research on the subject, just like most on here so I knew what to ask.

    I hate to give advise, but if the pain and so forth dont settle down in a reasonable amount of time, I would insist on an MRI to see if theres any problems in there. I havent seen to many cases where people got post op MRI's early on. It's always an exray, ya know???

    Meds: I recently went on Neurontin for pain, I am taking a small dose but just increased it to 600 mgs per day. The new doc says I should be at at least 1000 to 1500 mg per day. It does seem to help a little, I'll let you know if it gets better. You might ask about it, it's for nerve pain.
    I also take baclofen for spasticity in my legs, not for pain or spasms.

    Now for my disclaimer........Dont take it from me, I only know from my own experience, you need a pro, if you dont like the one you got, toss him back and go see a new one.

    I will give you one piece of advise without my diclaimer, leave the weights and the horse alone until the doc says so. You could end up alot worse off. Remember you're still in the first inning here!

    Hope you feel better soon

    Take it slow....Mike
    Eveything that Mike said is 110% true about me.

    Matter of fact, I invite you to read some of my most recent posts.

    Stick it in there.

    Find the medicine that helps you the best.

    Know that there ARE others that didn't "magically" wake up better, but do see improvement!!!!! It just takes time.

    Don't lose hope!!! Read my thread! Please!

    (I'm not 110% yet - no where near... But for the first time in the past month - I sat on the couch next to my wife... not in my recliner in pain.. Didn't last long, but it DID happen.)

     
    Old 03-30-2006, 03:53 PM   #4
    jjmaxx
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    Re: Post afdf for spinal cord compression

    Saddle--I feel a lot like you do--very similar experience. I have resigned myself to just be patient, take ti week by week, month by month. I saw five MDs prior to surgery--two Neurologists, one Pain Managment doc, and two NSs. After they saw my MRI and saw one huge herniation and bone spur at c5-6 compressing my cord by about 50% and the c4-5 covering about 25% of the cord, they all agreed both discs needed to come out. All five said I would get instant releif, and at 4 weeks post op I am significantly worse than pre-surgery. Thanks to many on this board and elsewhere, I feel like the releif will eventually come, just need to wait longer than most that have this surgery.

    We all just need to keep posting progress (or lack thereof) on this board to help each other. If I don't start feeling better in another two months, I am going to have a t-shirt made that says "I Went To My Neurosurgeon To Get My Neck Fixed, and I All I Got Was This Lousy Three Inch Scar".

    Serioulsy, just read as much as you can on the topic and take it easy. Best of luck to you.

     
    Old 03-30-2006, 07:22 PM   #5
    Backinthesaddle
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    Re: Post afdf for spinal cord compression

    acdf I have been following your post even posted one time. I guess I didn't know the reason for your acdf. I guess I am having a blond moment and I suppose all acdfs are for spinal cord compression. Sounds like you are still going around in circles with little relief.

    You mentioned degenerative disk did your doctor tell you you had that? I am confused about that. If it is a disease then it will happen on its own right? I do not know of any family history of it and my parents are old. You seem so young to have it. All I know is that besides tight muslces from weight lifting or stress I never had issues before I was injured at work.


    Hi Mike I did look up topomax and neurontin and neither are safe while breastfeeding so I won't be able to try that until I wean my son in a few months. Do they work anyhow? When you have spasms what are they like? Im not sure what I have going on but my legs will quiver especially when I lay down at night and my arms both quiver. Occasionally my left arm will flop away from the body.

    JJmax I want one of those t-shirts and on the back I can thank them for the 4" scar from my posterior decompression c6/7.

    When did you all go back to work? How are you handeling it? I know I have to go back before long as Workman's comp isn't that kind nor the city I work for but I know I am going to ache and do not look forward to it. I doubt they will let me get up and walk around every 20 min and wear sweats all day. I often think my supervisors just think I am taking advantage of the injury time since I have a young son. I don't even think the doctor believes it sometimes when I tell him about the pain. What is it with people? Seems if you do not have something outwardly to show them they figure it is in our heads.

    I do have good hours and bad ones. Not much different though then before. My jaw aches these days and has for the past 1.5yrs and the doctor asked me about tmj, I do not have TMJ. I just want to know that what I feel is normal for those of us with the cord compression and I am not just imagining things. My husband doesn't get it since I still do a lot around here and with our son, because there is no choice. But while I do it I smile for my little boy when I cry inside. I would love a massage when the boy goes to bed but do not get one very often. Thank goodness for the heating pad.

     
    Old 03-30-2006, 08:21 PM   #6
    JackieH
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    Re: Post afdf for spinal cord compression

    Hey Bits,

    It's Jackie here, again. I'm a blonde, too! But I'm wondering how I'm going to get my roots done being 8 wks post op...they're showing & I'm afraid that salon sink will tweak my neck too much?

    OK...so you have SOOOO much going on right now. I would really be shocked if you felt tons better at this point. My babies are 12 & 15. They feed themselves these days. My "job" is supposed to be just getting better....relaxing. I have a cleaning lady & everything. And I am still not better yet!
    I wish I could send you a package of peace & rest, BITS. You are under so much stress with mothering & possibily facing returning to work soon etc...
    Your muscles, nerves etc.. are tramatized from the surgery still. This, coupled with your life stresses spells slow healing.
    One day, I'm 99% sure, you & I will look back on this suffering with healthy bodies, pain-free arms & a big smiles that it's all over. Don't lose hope.

    We bought a hot tub with neck, back & leg jets last week. I've found a way to do some aqua aerobics in it, actually. I keep the temp at 92 during the day & work my arms, legs & abs. Then at night heat it to about 100 for just relaxing.
    It's really making me feel better. My arm still hurts like crazy but I have a greater feeling of well-being, being able to exercise in the water & the comfort of the heated massage. If you have access to a hot tub, I recommend it.

    I wish I could make you feel better, BITS. I know there's got to be more to this than our 4" scars. There's just got to be!

    Keep smiling at your precious little baby boy, get lots of fresh air & keep up the hope for a better future.

    Love,
    Jackie

     
    Old 03-31-2006, 01:34 AM   #7
    JackieH
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    Re: Post afdf for spinal cord compression

    JJ....

    Thank you for the good laugh! Sign me up for the T-shirt. Maybe we can get a discount on a large order.

    Seriously, tho....for anyone searching this board for hope..we're all just not healed yet. I think we've all had the surgery in the last few months so don't let us discourage anyone.
    It's good to have partners in this, tho.,,the good, the bad & the ugly parts of it.

    'Hoping for more good,
    JackieH

     
    Old 03-31-2006, 07:59 AM   #8
    Backinthesaddle
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    Re: Post afdf for spinal cord compression

    Thanks again Jackie for support. I actually had my highlights done right after the surgery. My girl used good caution but it had already been 8 or so weeks. Used to be able to keep it highlighted itself when I ran and rode the horses in the sun (visor of course for the wrinkles).

    Oh boy would I love a cleaning lady but her name is ME. I have not been doing the cleaning like I used to and have my husband doing the vacuuming and floor washing. But his idea is monthly so I have to ride him all the time. I used to do it almost daily since we live in a sandy area and with animals it gets dirty.

    My little one now scrawls (scoots and crawls) so I have to get a way to corral him in soon. That and 8 teeth biting everything in sight including me. More then a 7mo should go through.

    I go today for a follow up and Xray and do not look forward to it as my doctor has no personality and I know he will just brush things off as just how it is. Can't do much about it. He is a great surgeon and it is workman's comp so thank God I got a good surgeon to start with. I do have a good friend who lives in another state who works with a PT place and she said there are tons of things they can do to help. She is going to talk to me later and give me some ideas that maybe I can get the doc to try.

    I do have a hot tub but it needs cleaning and filling. And I am not up to the task. It is 12 yrs old and doesn't have all the fancy jets so it really is just hot water as the jets do not hit the right spots. Plus it is so hot there that I am not sure it would feel to good...........but maybe it would so worth a try. I may look at a new one for medical reasons and see if I can get a tax credit for it????

    Anyhow off to try again to put the little one down. The kid HATES to sleep but loves spinach..........go figure?

    Kelly

     
    Old 03-31-2006, 09:15 AM   #9
    mb100
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    Re: Post afdf for spinal cord compression

    Hey Saddle,

    I think neurontin is prescribed for chronic nerve pain, not sure. I know you've suffered from the compression for almost 2 years, but, as you are only 6 weeks post op they might not consider it chronic until you have had time to recover awhile and see exactly where its at. Not sure if memory is serving correctly, someone else jump in.

    The doc will know for sure.

    Havent worked since the accident 3-04, dont know if I'll get back to it, but I sure miss the old life. And having money.

    Take it slow...Mike

     
    Old 03-31-2006, 12:41 PM   #10
    ember919
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    Re: Post afdf for spinal cord compression

    the neurontin is for nerve pain. i took it for a long time and just in January switched to the newer lyrica. (i haven't noticed a difference) i can't remember what neurontin is used primarily for, but it isn't for folks like us. i know it's used sometimes for those with diabetic neuropathy, tho.

    i haven't worked in over two years because of this (well, some other family issues intruded, too) and we are sooooooo broke it's scary. that is certainly one thing i am hoping for as an eventual outcome of the surgery! people laugh when i say i miss work, but i do! one of the things that just peeves me beyond belief is when someone says, "oh, you're so lucky not to be working! it must be nice to be on vacation all time!" i always wanna say, "yeah? well you take my pain and i'll take your job and let's see if you feel the same way."

    aargh!

    oops, venting, aren't i? apologies.

    back to orginal - the neurontin definitely made an impact on my pain level. not like a narcotic pain med, but just kinda took the edge off the daily stuff. i went off it for a while and noticed the difference.

    thinkin' good, healing thoughts everybody's way.......

     
    Old 03-31-2006, 01:27 PM   #11
    mb100
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    Re: Post afdf for spinal cord compression

    Hey Ember,

    People dont understand that havent experienced it. I was ready to go back to work after about a week!!!!I live on a lake and I love to fish, but have just been watchin since.......

    Better times ahead, you can bet your boots!

    Take it slow.....Mike

     
    Old 03-31-2006, 02:31 PM   #12
    JackieH
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    Re: Post afdf for spinal cord compression

    Hello Friends,

    I've been on Gabapentin, aka Neurontin for 6 months now. It took my headache from 7-9 constant to 3-5. So I'm a fan.
    It's actually an anti-seizure drug they discovered also helped nerve pain...especially in MS patients.

    It's very expensive, tho.....$200 a month for me on 3600mgs so I'm tapering off to see if I still need it.
    'Hope I'm OK w/out.

    Talk to you soon,
    JackieH

     
    Old 03-31-2006, 05:21 PM   #13
    Backinthesaddle
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    Re: Post afdf for spinal cord compression

    Ember you are so right, I am so thankful to be off work right now. Odd I know but the timing was all just to perfect...........hmmmmm devine interevention? I have been able to stay home with my one and only baby and God knows it took us so much to have him that even though I am in pain he just brightens my days. I do not miss work, nor the hassles of it but I miss my old life which consists of work. I need 5 more years for a decent retirement so soon enough I will be back to it. Like you I believe people just think I am at home playing with my baby. Sure I do that but not without the effects. I am so exhausted, sore and tired all I do is growl at my husband and once the baby is in bed I do not move.


    Mike sounds like a pretty place to be. Just being by water is relaxing and has its own medicinal effects.

    I was shocked and suprised in a good way today at my 6 week follow up doctor appointment. This is the very first time he actually talked to me and not at me. He told me to expect a year of recovery and that since I am so small it will be harder for me. (why? not sure). He also said I should have had the surgery no later then 6 weeks post compression not a year and a half. Not to mention the original doctor treated me for shoulder instability and I was in good shape then and the PT had me doing push ups and push ups on weights and ball rolls and all the things I shouldn't have done. The doc asked me if I planned on going back to work? I said yes when I am not in pain.......................he also is setting me up for PT. He said I need to get the upper body strength back. He told me I could ride my horses too as long as I do not fall off, he said that would not be good. So I guess I won't just yet. I go back in two months. My work is not going to be happy . I wonder why when I first went to him he said I will be back to work in 4 weeks post surgery................did he even look at my films before he cut me?

    K

     
    Old 03-31-2006, 09:43 PM   #14
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    Re: Post afdf for spinal cord compression

    Quote:
    Originally Posted by Backinthesaddle
    I was shocked and suprised in a good way today at my 6 week follow up doctor appointment. This is the very first time he actually talked to me and not at me.
    K-

    I am soooo happy you had a chance to speak with your Dr.

    I know it sounds hollow, but try not to dwell on what other people at work, social clubs, extended family, etc. may or may not think. You need to keep that energy for YOU right now.

    I have a lengthy and ongoing medical history (wouldn't know it by looking at me) and long ago stopped sharing certain health details with professional associates, friends, even with my wife, at times. Nobody at your place of employment - outside of HR - is in need of a birds-eye view of your health.

    Check out the State's "Patient's Bill of Rights" when you get a chance. BTW, YOU tell the Dr. when you're able to return to work, not the other way around.

    P-

     
    Old 04-01-2006, 07:24 AM   #15
    Backinthesaddle
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    Re: Post afdf for spinal cord compression

    Thanks F4M I will have to look at the Patients Bill of Rights. You are right though about not sharing what is going on. I have a guilt complex for some reason I have had it all my adult life. If I feel someone like my supervisor thinks I am a slacker I get guilt ridden and try to prove why I am not slacking. But in the end I know whether I am or not.

    No one can understand how we feel unless they are in our shoes and exactly in our shoes as you see many recover quickly from ACDF's and others of us don't. I wish though I had someone close that understood and would comiserate with me. My husband says he understands but doesn't. I still cannot get him to understand that taking care of a 7mo 90% of the time without sleep, rest or even eating is so tiring and then having to keep the house clean is just making me a outright B....! I don't feel hopeless just frustrated that my life is on hold for now. I am not getting any younger and getting back into shape at 42 won't be easy, I worked so hard to get tight and toned to see it all gone. I do thank God every day though for my life and the ability to be able to work out again (someday) when so many others can't. I just want one day of rest but do not see it anytime soon.

    I am irritated at my doctor too. Why in the world did he lead me to believe the recovery would be short and sweet? Makes me wonder if he saw something worse then he expected when he got inside my spine. Im doubly irritated at W/C for not letting my NS operate when he wanted all because he was retiring and moving to another state a few months afterwards. He could have referred me to this doctor for follow up care. Doesn't make sense.

    Sorry I am gripy today. My husband is off doing his weekend military and this week has been no help at all with his work schedule and I have been so extra sore. I have had a very upset stomach this week (post hysterectomy 3 weeks ago) and I cannot sleep. The baby began to scrawl (cross between scooting and crawling) and we have nothing prepared for this since we didn't expect it yet so I am chasing him all over saying NO Joshua do not eat the phone cord, No Joshua do not crawl into the cat box, No Joshua don't.......Poor baby.

    OK Last thing- HOW DO YOU ALL SLEEP? A SPECIAL PILLOW? MATTRESS? I have a temperpedic pillow but it no longer works, it feels like rock. But at $100+ I do not want to get another one if it won't work either. WHY is there no special cervical heating pads? Or good neck massagers (that actually work), pillows that do not collapse? I think we should all get together and form a company selling these things, we would make millions. If only I had a deisgn sense I have some great ideas. I have searched all over the web and cannot find anything that really works and even medically there isn't any real tools.

    OK Im done and baby is waking up form his 30 min nap. (he hates sleep too)

    K

     
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