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Extreme Fear/Anxiety about the Future...

Caddyman32CCaddyman32 Posts: 6
edited 06/24/2013 - 10:17 AM in Depression and Coping
Good Afternoon All,

I've been'a lurker and reader hereabouts almost since the day of my ACDF surgery now just shy of two months ago. Indeed, not only have I read (seemingly) every post under every topic heading on "this" board, but possibly every posting on every board everywhere - in addition to literally dozens of scholarly papers and abstracts, studies, broad analyses and discussions of all things "cervical fusion." The result of reading this enormous body of experiences and academic knowledge has been to simply instill in me, fear and in equal measure, extreme depression and anxiety about choosing surgery in the first place and, what impact that choice may have upon my future.

First however, my story (and my apologies in advance for the length). I was involved in a car accident in March of this year (rear-ended "hard" while stopped at'a light), and my second in four years (!). The impact either herniated two discs for the first time or else pushed them over the edge, and caused one (that between my C5/C6 vertebrae) to rest on'a nerve. Moreover, existing bone spurs on those vertebrae were pushed into my spine, causing slight deformity. The pain from the aforementioned was initially "insane" - bar none, the worst I've ever experienced in my life. After the usual, minor anti-inflammatories and pain meds did little-to-nothing to quench the proverbial fire, I was subsequently prescribed Meloxicam (by my orothopedic surgeon) and the worst of the constant pain subsided. However, in attempting a return to my usual six-day/week weight-lifting routine, I noticed that my right arm (bicep and wrist) were experiencing profound weakness - as though an achor were attached to the arm and resisting my efforts to pull upward. In relaying these symptoms to the doctor (and in comparing to the MRI/x-ray I had already had done), he immediately attributed both to my compressed nerve and spine and was emphatic about the only "permanent" fix: surgery.

In discussing that option, at experiencing the aforementioned pain and weakness; at being informed (by the surgeon) that these symptoms would not resolve over time, and indeed may get worse, "and" at being told that the "cure" (removal of the offending disc and fusion of my C5/6) was (in the experience of the surgeon), a routine, outpatient procedure that would have no long-term impact on my health, physical abilities (including and most importantly for me, my weight-lifting routine), agreeing to the operation seemed the prudent and proper thing to do. Now, two months later, I'm wondering if I unknowingly but willingly butchered myself.

Now to be fair, the operation was and has been relatively painless. Two months out and I can say that I've never experienced acute (sharp) pain at any time, and indeed, I've never needed to take'a single "anything" for pain right from my discharge at the hospital. That said, where the surgeon perversely (!) told me pre-op that again, the operation would be out-patient, and that with'a Wednesday operation, I should be back in the office the following Monday (serious!), I instead stayed overnight at the hospital, and subsequently took'a month off from work to rest. I attempted once to return at the two week mark and, noooosir. Attempting to do engage my "spend 90 percent of your day looking down at paperwork" daily routine (even in my soft cervical collar) was'a distinct no-go. I have since returned to work and, with generous accomodation from my employer, been more or less getting by.

But, I digress...and here is the root of my deep sorrow, depression and anxiety (and so the point of my posting)...

At returning home post-op, and able to spend hours and hours (and hours) reading about all things cervical fusion, to my horror, I discovered that mine in fact (and indeed, any fusion surgery) are not "simple and routine," and they most certainly are not one-time fixes or clean-ups of other injuries. I now know there's every possibility that adjacent segment degneration (and later, adjacent segment disease) will occur - whether at two years or twenty - and that simply by LIVING, I'm potentially causing new strain, damage and even my own future spinal injury. Where at signing up for surgery, I anticipated a quiet few months of recovery and rest, followed by a return to the gym and my former, very athletic and still young life, I've instead read stories here of folks herniating the next disc in the chain by attempting such herculian efforts as lifting "heavy" laundry baskets, or sleeping incorrectly - and subsequently needing their second and fourth fusions!! While my heart goes out to those here in constant and chronic pain (I've spent more days crying for myself and others in the last two months, than I honestly have in perhaps the whole of my 33 years), the thought of joining the ranks of those in chronic pain, medicating myself just to get through the day when all of three months ago I was utterly pain-free and strong...well, you can see why I'm borderline over-the-edge with despression and fear.

So, that novella all babbled, how do you all handle it...the fear and anxiety about the future? While I obviously know that nobody can answer this question but, has this one injury and C5/6 fusion surgery really doomed me to'a lifetime of degeneration, pain and disease? Am I going to still be prowling this board in two, three years, talking about how the right mix of oxy and percocet are only sort of making my day liveable?!

I suppose I just need some of what the board (and we all) are here for...support and reassurance.

Thanks for reading.


  • Hi am writing to you as none else has responded. I'm scared of surgery too for the very same reasons you are. Not very uplifting. As you are young you might not get disks collapsing onto the ones below.

    My ex had this surgery and he has been OK for years.

    If you're not in pain now enjoy it.

    Take one day at a time and make every day a good day. Who cares about the future - you never know what's going to happen - you could be dead tomorrow so enjoy the reprieve - make sure you live every day to the fullest. Do the things you want to achieve and do them now.

    Pain makes you reassess your life so work out the most important things to you. And work isn't one of them.

    Try Kalma if you can't concentrate - you'll have to look up the name over there. Your spine is your central nervous system so you do have to be careful. I loved doing weights too but don't do them anymore. Mine was from an accident too. It sucks when you are healthy fit and a workacholic to adjust. Please don't gung ho through it like I did. Listen to your body.

    One thing that I will advise is that if you get muscle relaxants now - early on - that you might not have trouble later on. I have the best pain relief from my T4 trying to take over from my T5 when it is pushed back into place. As it has been out for so long my muscles just push my T4 straight out again.

    So if you take muscle relaxants now your surgery might be able to heal in the right place without your muscles trying to take over.

    Someone here mentioned Kalma - it's called something different in the States. They said it helped as a muscle relaxant and pain, but it is used for anxiety normally. I wish I had taken muscle relaxants initially as I think they would have helped and I would have healed much better. Your body will try and fix itself.

    Stop worrying - don't start weightlifting again - don't do anything you can't and that will hurt later on, even if you get angry.

    Anyway gota go - do some gardening, lift some weights, ride my motorbike, skateboard, do salsa dancing - just joking but you can so, stop worrying and enjoy it.

  • Oh dear, I am so sorry for you plight both physically and state of mind. I am truly concerned for you. Do you have family and friends to support you through this difficult time in your life. I know that your pain is not just for the here and now and you will need loving, caring people to talk with you on a daily basis. I know it is hard to find the silver lining and look on the bright side, but you must count your blessings and know that there are others out there in your same or worse situation. I know many people who have been suffering your same plight and have found a product of support and relief. These people are there for you every step of the way. If you can find it in yourself to reach out. I will put you in touch with those that can help. You are in my prayers.
    Cynthia Wallace
  • MrGrouchMMrGrouch Posts: 108
    edited 06/29/2013 - 5:21 PM
    That seems to be my three word saying on this site, wonder if I can get rich like " Git R done"??? But if you feel so inclined look at some of my posts and you will see ups and downs. I came very close to giving up and I am still here and glad of it. I just decided to NEVER GIVE UP. There are always other options, there is always light at the end of the tunnel but in our half crazed state of pain we don't always see it. It's there and you will find it. Oh also NEVER TAKE ANY DOCS WORD, ALWAYS CHECK IT OUT. TOOK ME 8 BEFORE I GOT ONE THAT DID NOT BLOW ME OFF.


    Mr Grouch in MD.

    very bad sciatica and DDD in mid and upper back.
  • Its sounds like you had a great life before your surgery, going to the gym every day going to work ext your 33yrs yes. I was 33 when It happenad to me like your self the C spine and you can get depression at first. You might have to give up the wight lifting but you still be able to go to the gym you still got your job . Its hard right now and its sounds like you are really feelling down but try and hold onto the good things the things that make your day better.
  • Caddyman32CCaddyman32 Posts: 6
    edited 06/30/2013 - 4:49 AM
    Thanks for the heartfelt responses everybody. This experience has been for me - as for us all - a daily waking nightmare, and the toll it's taken on my psychological "and" physical health are...well, I've never, ever experienced anything like it. For me, this has truly been the worst year of my entire life...and worse yet, I don't know what my life is or should or could look like going forward. Even when I fully recover from the surgery, when the doctor says that I'm as fused as I'll ever be and that I should just go forward and live my life, the notion that I'll never "really" be healed, that I'll forever be missing one of my cervical discs and that with every innocent twist and turn of my head, I'm causing juuuuust a bit more damage and degeneration to the remaining others...again, it's a horrifying nightmare from which I cannot wake.

    Ya know, I can get my mind around "injury and recovery." I can accept that tragedy happens; I can accept my medicine, lost time and missed opportunities as I rest and recover from injury. I can even accept a loss of former activities that I loved and which gave me purpose IF the end result is that I'll be healed and ultimately able to continue on without pain or further degeneration. But that's what makes fusion surgery or back surgery in general so incredibly frightening. Unbeknownst to me as I signed on for the procedure, after the work is done, after one is "healed," you're really not. While the surgery may remove pain for the moment, it's just as likely to create new pain, months, years, decades down the road. How maddening is it, that after this operation, there's no diet I can follow, no exercise routine or lifestyle factors I can choose that will guarantee I won't see adjacent discs degenerate and ultimately herniate, plunging me again into nerve impingement, mind-ripping pain and possibly more fusions. And to make it all more painful from'a psychological standpoint - I did this to myself!!! In one moment, I unknowingly but willingly it seems, ceded control over my health - my very future and agreed to be butchered.

    I know that's naive. I know deep-down that I never had "control" to begin with, and at any moment of any day all of us could be killed in an auto accident, or diagnosed with some terminal disease. Indeed, just yesterday, I read through'a FaceBook friend connection about'a young woman, all of 31 years old that is presently fighting stage IV colon cancer. She's already had about every organ surgically removed, and is on her 53rd (!) round of chemo. Prior to her diagnosis at age 28 (!) she was'a practicing lawyer, newly married and with'a brighter future in front of her than just about anyone. Compared to her pain, to the fears that she no-doubt (and understandably) entertains, my life at the moment is rosy. But that said, and selfish though it may be, I can't shake the paralyzing, gut-wrenching notion that all of three months ago, I was pain-free, injury and surgery free, and planning on'a summer of camping and road trips, concerts and BBQ's...and now, it's all gone and my life going forward is uncertain and bleak.

    Needless to say, since the surgery my heart goes through daily periods of racing (palpitations) and my chest always feels degrees of tightness. I cry almost daily - alone with myself, to my friends and family. I find myself obsessively thinking about - regretting - my possibly naive decision to have so quickly pursued surgery before exhausting conservative treatment measures. I mourn the loss of my former gym-centric lifestyle - my "youth." And most poignantly, I'm wracked - paralyzed really - by'a fear about that uncertain future, one that might include adjacent segment disease, chronic pain and even more surgery.

    I know I'm blessed to have gone through this first phase of our shared terrible journey (surgery) without pain. I know many here haven't been so lucky. I'm also blessed to have'a wonderful support network in my parents and friends (although there, I'm also wracked with guilt over almost daily dipping into their well of generous consoling and love, and wonder if it's just'a matter of time before my constant crying/professing of fears, etc. causes me to lose at least my friends, if not my family). Moreover, I'm going to be getting professional help starting next week for my obvious anxiety and depression. Indeed, on that note, I wonder if the incredible gut-punch of learning about the long-term implications of surgery (and again, where prior to the operation I thought there were none) has thrown me into'a kind of PTSD-like shock (something I've found that isn't uncommon after back surgery and use of anesthesia meds)?

    At any rate - and this will sound quite naive - my life will never, ever be the same. I can only hope that somehow, day-by-day, even hour-by-hour, that I'll be able to find the strength to control my fears and, slowly begin to build'an entirely new life based on new realities.

    Good luck and strength to us all.
  • Caddyman32CCaddyman32 Posts: 6
    edited 08/14/2013 - 6:04 AM
    Three+ months on from my ACDF surgery (single-level, C5/C6) and I'm still absolutely struggling daily with fear/anxiety about my future...about the double-digit percentage chance that within 10 years (or two or 20) that my rushed decision to undergo that surgery will lead to adjacent segment degeneration and eventually disease...that perhaps "all" ACDF surgeries "at best!" lead to inevitable chronic pain, new herniations at adjacent levels and, at worst, more surgery.

    I've read "every" study there is on the matter (I've even read studies that summarize and consolidate the other studies!) and, coupled with the (unfortunately) innumerable horror stories posted on this and other boards, I just can't shake the notion that someday - perhaps much sooner than later - the stress now placed on my adjacent discs (one of which that was already protuding btw (!) but was asymptomatic pre-op) will cause movement into'a nerve or my spine and, rinse, wash and repeat of the nightmare that has been my 2013. Prior to my car accident in March, I was'a healthy (so far as I knew or felt anyway) pain-free 33 year old - in the gym six days/week lifting heavy, hittin' regular cardio throughout. Now, that life is obviously over and I've the 20lb weight loss and muscular and psychological atrophy to show for it. But I could live without bodybuilding (much as it's killing me at the moment), if I knew I wouldn't have to experience the insane-o pain that came with my accident/herniation...or rather, that my choice of treatment won't CAUSE a repeat of that pain and herniation in years to come.

    To that end, if any of the moderators have any insight, if anybody out there has any personal experiences (your own or from doctors, elsewhere online) of people that have undergone ACDF surgery and gone decades without another issue (pain, surgery) and/or ideally, been able to return to "something" of an active gym life, you'd be doing your good deed of the year - and much to assuage my anxiety-wriddled mind - to post those stories here...please. :/
  • I don't know if this is going to help any of you who are struggling with the anxiety of the unknown waters that are our futures.
    Yes, there are horror stories on these and just about any other forum out there , about the adjacent discs taking a turn for the worse and resulting in more surgeries down the road, but the reality is that just because one disc goes bad or there is stenosis resulting in the need for a fusion, there are things that each of you can do to mitigate the risk of other problems down the road.
    The first one is make modifications to how you do things now- neck problems, and doing office work don't necessarily go hand in hand once you have surgery. Change the position of your monitor, look into ergonomic options for desk work or find another lay out that avoids having to look down for extended periods of time and if you must, you may just have to look into other ways of doing your job or consider changing jobs altogether.
    Make strengthening the core muscles a priority- every day. Mild strengthening excercises will help to protect your back and neck from further injury by offering some protection.
    Avoid doing activities that you know cause additional pain , or stress the injured area.

    There is no way to predict which, if any disc or other area of the spine is going to suddenly take a turn south, all you can do is do whatever you can to mitigate that risk and then get back to living your life.

    Fear can become paralyzing if you let it, and that is no way to live. Talk to your surgeon and ask for ideas and suggestions, as well as limitations of what you should be doing in order to preserve the rest of your spine from further damage.
  • Caddyman32CCaddyman32 Posts: 6
    edited 08/20/2013 - 5:44 AM
    Good Morning Sandi,

    My thanks for the thoughtful and certainly helpful reply. Your timing (and message content) are particularly timely as I just had my three-month post-op (again, C5/C6 instrumented ACDF) follow-up, and my surgeon's direction going forward is...I dunno, bizarre (?) and I'd love your (and everybody's) thoughts (within the limits of the posting rules of course).

    My latest x-rays show little visible fusion has occured. This fact didn't concern the surgeon, and he informed (or rather "revised") the estimate for total fusion to a new 12 - 18 months. Whatever.

    For what it's worth, I remain pain free, and have been since my operation. No weakness, numbness or other symptoms to speak of beyond an expected period of stiffness, soreness and such in the muscles surrounding the surgery area (neck, shoulders, upper back). My range of motion feels normal - indeed slightly improved as a "tightness" (like'a rubber band being stretched) at the extent of my former range that I'd noticed for years but to which I never paid any mind, has gone away. I'd surmise this was my (pre-crash) asymptomatic but protruding C5/6 disc sittin' out there and pushing on something...but I digress...

    That said, the surgeon's direction...at my latest appointment (three months post-op and despite little-to-no fusion having occured) I've been cleared for..."everything." He said I'm free to bike-ride, run (!), water-ski - to even go back to my former six-day/week bodybuilding routine (e.g. to train with heavy weights) if I so desire! His belief is that the plate bolting the two vertebrae together is more than strong enough to resist any stress from physical activity - and despite the fact that I still have'a protruding disc beneath the fusion site at C6/C7 (!!) At pressing him on my concerns - at expressing my desire to never, ever experience the pain/weakness I did via my operated herniation and, more poignantly - that I never, ever want to have spine surgery again - he just shrugged, said that if a disc is gonna go (or not), it's just gonna be nature taking its course, that there's nothing I can or can't do about it, and so being young and heretofore "very" athletic, I should just go forth and live my life.

    So, with that update out there, and while I realize that we're not supposed to comment on advice given by our doctors, here's my related question. My surgeon wouldn't prescribe physical therapy. He stated that there was no need, that my "rehabilitation" should simply be to go out and live my previous, active life again. What do y'all think? Would there be any benefit (particularly in attempting to minimize the horrifying notion of adjacent segment degeneratio and later, disease) in pursuing physical therapy...or, for'a single-level fusion performed on'a heretofore strong and healthy 33 year old, is it enough to simply continue living life as before and hope for the best long-term?

    Thanks to the moderators and all in advance for your help.
  • I think , if it were me, before I resumed your previous workouts, I would check with a qualified trainer at your gym. While the surgeon is correct in stating that the hardware should hold up to normal activities, lifting heavier weights than most people do , would make me want to be sure.
    As far as the lack of fusion goes, I am assuming he used bone that was yours? Or was it cadaver bone? It can take up to 18 months, in some cases two years before fusion is complete. Did he suggest a bone growth stimulator? I know that some surgeons use those , especially when there is no sign of bone fusion beginning by 6 months.....but he appears to feel it is early days yet for fusion to be shown on the MRI, and if he used your bone or cadaver bone, both can take some time for the process to be seen on film.
    It's great news that he released you to resume your activities, but to be on the safe side, I would start slow and work your way back into it, not jump headlong right back into your previous routines..........just my opinion.
  • Caddyman32CCaddyman32 Posts: 6
    edited 08/21/2013 - 8:11 AM
    Good Morning Sandi,

    Thank you again for your advice, taking the time to write (both are much appreciated). It's exactly my plan in coming weeks to talk to several additional orthopedic doctors as well as physical therapists to evaluate what, if any, would be an apporpriate (and prudent) amount of exercise going forward, both in the short-term, and for the rest of my life. Interestingly, I've read studies that show with single-level fusions, NFL players and professional wrestlers (!) have been cleared to return to their very high contact sports, and with the whopping majority going on to play (to say nothing of work out with heavy weights) for many years before retiring generally for reasons unrelated to their c-spines. But then, to counter that positive information, are the seemingly billions of people here and elsewhere online that seem to self-destruct after their surgeries, never return to physical lives, and enter into'a nightmarish cycle of chronic pain and surgery after surgery after surgery. In between the two are the myriad scholarly tracking studies I' ve read that state there's a roughly 15 to 25 percent chance that I'll see the next disc blow within 10 years, and a 5 - 15 percent chance the herniation will be bad enough that it will require surgery ("not respond to conservative treatment').

    I dunno...if not lifting could "guarantee" that I'd not see adjacent discs rapidly degenerate and herniate, I'd give up the gym forever...but as you rightly said, there's no way to know when or if such'a scenario will occur. All one can do (I suppose) is live'a healthy life in general, take what steps they can to avoid excessively taxing the spine and then, hope for the best - or rather, hope that by the time the next herniation occurs, and the nightmare pain and extremity weakness returns, that stem cell regeneration of discs will have become the "standard of care." But then that mess of inherent uncertainty isn't easy for'a young, former health nut and amateur bodybuilder that thought one could avoid a "chronic" condition (including pain) by remaining active, muscular and strong. Life...she can be'a foul and nasty b**ch indeed, no?

    Anyway, to answer your other questions; my surgeon utilized allograft, mixed with bone marrow (taken via needle from my chest plate) and shavings of the big ol' bone spur he ground down to fill the PEEK cage (placed between the vertebrae) and to support or encourage fusion. Nothing was taken from my hip (illiac crest) and the surgeon didn't recommend a bone growth stimulator.
  • You're right, neither option is the best one out there, but really all we can do is choose to get on with our lives. My injury originally happened due to a motorcycle accident, when I took the brunt of the impact (60 mph/highway speed) , went about 100 ft through the air, then another 75 or so feet turning over and over....needless to say, given the speed involved, and the fact that this occurred on an interstate highway at night, it still took 16 years before the damage to my spine finally caused the herniations to come to a point where more was needed than a few visits to the chiro to keep me going......anyway, after my first surgery, I recieved a spinal cord injury ( lumbar spine), on top of the already existing problems....was loosing my ability to walk, more and more each day, and the injury caused me to loose more of the function of my lower half than I had originally. I had to have a second operation, salvage is what the surgeon who did it called it, hoping to find a way to keep me on my feet, as it was, I was in a wheelchair for most of the time since I couldn't stand on my feet for more than a few minutes at a time......My doctors ordered a motorized wheelchair for me and told me in no uncertain terms to prepare myself for spending all of my time in it......not exactly what the first surgeon promised me was going to be outcome of the surgery.......
    Anyway, this was all in 2006 and 2007.......I currently am in need of a third surgery, but due to the use of bone morphegenic protein used to ensure fusion the second time, it instead caused a whole lot of bony overgrowth in areas that it was not supposed to.....in fact, now three levels in my lumbar spine are now adhered to the dura covering my spinal cord. I was told that the diameter of my canal is now a mere 3.14 mm wide at those levels and I have a slipped vertebra that is better than 50% off the one below it.....but surgery is on hold until I become paralyzed due to the extreme adherance of the covering of the cord..it will result in a very large dural tear, which will take some weeks or months to heal, assuming that they can in fact, stitch it closed, followed by the rest of the surgery.
    My point in telling you all of this is that I can either choose to sit around worrying about what will cause the paralysis, worry about every move that I make, and allow this problem to continue to interfere in every aspect of my life, letting the fears consume and prevent me from living, or I can take each day as it comes, and be thankful that today, I am still on my own two feet, and live my life as I choose to for as long as I can...so I choose the latter.
    All the studies that I have read said that I shouldn't be on my feet, my doctors say the same thing, but here I am..the studies are just one small snapshot of a very minute group of people at a moment in time...all of that excercising and strengthening may in fact, be what protects your spine from further damage, and it may be 30 years or never before you ever have another problem or you may never have one again...there is no way to know, so go back to living your life, enjoy the fact that you are able to do those things that you love, and relish each day as one in which you will live it to the fullest. Protect your back and the rest of your body as much as you can, take precautions when you need to but don't let the what if's dominate how you choose to live......
  • downinmyheartddowninmyheart Posts: 497
    edited 08/26/2013 - 3:21 AM
    Hi, Caddy.

    If it were me, I would exercise caution. I would find a great physical trainer who has worked with people with spinal injuries and study about the best way to strengthen those supporting muscles gradually. Just my two cents.

    P.S. Anxiety really SUCKS! I used to think that people suffering anxiety were just big sissies and that they should get over it, whatever it was. Then I had an anxiety attack. I then apologized (in my head and heart) to all those I thought to be weak, and forgave myself for being so darn hard on myself.

    I am scheduled for a two-three level ACDF on Sept 23rd. Pretty freaked out. This is my third back surgery in 13 years, first one on my cervical spine. I am 32.

    One Love,

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