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5 months post opp L-1 to L-5 fusion-Pain is too much....

I am still in chronic pain. I lost my job because I can't go back to work. Then I lost my health insurance. I've lost my mobility and my quality of life. I never thought I'd still be in this pain. I can't go to my Doctor let alone fill any prescriptions because I don't have the money. On the positive side, I was just approved for SSDI so at least I'll have some kind of money coming in, in a couple of months. Then I was told today I was approved for SSI but is still processing. Thank goodness because without SSI, you can't get Medicaid! I found this out months after applying for SSDI so I applied right after that for SSI. But here I go again waiting...waiting....waiting. My pain management Dr. does not accept Medicaid so I'll have to start all over again with another Dr. Any suggestions on the approach with a new pain mgmt. Dr.? I need one Now, I am suffering and only have the 12 hr. 20mg oxycontin left and they don't seem to be working. I was also on oxycodone 10 mg every 4 hours, I have none left. Also for muscle spasms I was on metaxalone (generic skelexen, not sure of the spellings) 600mg 3 times a day. Does anyone have any suggestions? I'm going out of my mind with this pain.
New MRI's Not good-Cervical-Thoracic-Brain
DLIF 4 level lumbar fusion L1 to L5 Dec 2013...
ACDF 2 level cervical fusion C4-5 and C5-6 Dec 2011


  • Are you still seeing the surgeon? What does he say regarding your current status?
    As far as finding a new doctor goes, I will include the search link to assist you in finding a new pm doctor in your area. but you need to be aware and prepared for the fact that any new doctor may not agree with the medications you are on, nor be willing to continue prescribing something that any other doctor gave you.
    Most PM doctors want to assess your condition, and try the least invasive treatments and therapies first, then move onto injections and neuropathic and other medications,before they will consider the use of narcotics.
    I am including a few links for you to read, but if I were you, I would start weaning yourself with what you have left of the Oxycontin......and possibly talk to your current PM doctor about tapering you off until you find a new doctor. He may be willing to do that .


    Find a physician, Spine Center
  • I have had the same operation [L4/5L5/S1] ALIF 2 and half years ago and I am in pain too ,my doctor says I will be in pain for life and in my medical records I am down as intractable spinal pain .thankfully I am in the uk and I pay 110 pounds a year and I can have as many meds I as need .I could not cope without my meds I have been on them since 2005 I have had 3 major spinal operations and I need more surgery this Monday [bladder } caused by the last operation ,is there anyway that you can get your meds through a medical charity I don't know how it works outside the uk ..my prepay scrip is worth thousands to me as I am on benefit I have little money and a single script is 9 pounds bar a few pence even if I payed full price it would still cost me almost 100 pounds a month for my meds so just over 100 pounds a year is very good value and I am on oxycontin and oxynorm for BT pain I am also on diazepam and temazepam and movicol and cyllazine I don't know what I can say as I don't know the system but if I were you there must be a way for people that can't afford private meds especially when you are going through the kind of pain we go through ,.,I wish you the best and I hope for a good result maybe the people on here from your region may be able to help
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • Not everyone is going to wind up like you did.....and it isn't helpful to make it sound like that will be the outcome. The original poster is only 5 months post op, and with his type of surgery the recovery period for fusion is at least one year........the acute phase is 3-6 months.....where he/she will be at one year is not where he/she is now.
    Not every spine surgery has a disastrous outcome, and it is a process, one that has setbacks and gains by leaps and bounds....
    Getting through the difficult parts of recovery and not giving up is essential and working hard at recovering and regaining your stamina and walking is a huge part of the process of recovering from any spine surgery.
  • do I sense a little hostility ??.I know many people that have ended up in the same position as I have ..and that's just the people that I know and the ones that I have met at the out patients surgeries over the last 17 years .I tell it as is and if you notice I tend to say ..IN MY CASE or words to that effect when I am posting ....I tend to tell is as it is and don't give false hope .if there are people that have a good result .then well done to them ..but forums like this would not exist if everyone had a good result
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • sandisandi Posts: 6,343
    edited 05/17/2014 - 4:53 AM
    no hostility, frustration maybe.........alluding to a negative outcome for someone still in the early phases of recovery is not all that helpful. The post op recovery phases of spine surgery, is frustrating and full of setbacks, but a reminder that someone is still in the early phases of recovery can help someone motivate themselves to keep working at recovering and that it takes time. That improvement can still happen gives them hope, and reason to push through the rough patches.
    Patients hear that in three months they will be able to return to life, but often, especially in fusion surgeries, it is far longer than that, and for whatever reasons surgeons don't clarify that there are stages to recovery, and things will progress and set back, at the various stages of recovery.....
    I am not a "success " story either, but I don't tell everyone in the majority of my posts about my medication dosages or my limitations..........I want to inspire them to continue to work toward recovery, not give them reason to believe that they will join my status.
  • dilaurodilauro ConnecticutPosts: 9,863
    for some it takes longer than others. But one thing that is important for all of 'seasoned' members is to provide hope for others. Not false hope, but telling things they way they are.

    Tony, in your case, I think you already know the condition you are in and what the future holds for you. But there have also been many members with similar surgeries and are doing real good, perhaps fine when compared to your current status.

    There are so many good things we should b relating to our newer members or those having surgery for perhaps the first time. Read my posts, I am not a hugs type of person, I dont hand out soft easy love, I tell the truth, I spell it out, but both the good and the bad.

    Thats one of the reason members like ourselves are here, to support everyone the best we can
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I appreciate both sides of the outcomes, good and bad. But I am already hard enough on myself so I tend to gravitate towards positivity. Ron, I'm a hugger and I will gladly try to focus on the good things while I can.
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • backache99backache99 Posts: 1,338
    edited 05/28/2014 - 5:15 PM
    I think that because I was slim /fit /considered good looking /a non smoker non drinker /stable relationship an all in all good guy hard working blar blar blar ...you get the picture ,,then bang the car crash that almost ended my life ,it ended my first marriage I lost my house car job .now almost 18 years on I cant work I can hardly walk I have lost my looks I am down around 40k a year and I am suffering with intractable pain taking loads of powerful meds and this may just had more surgery ..IS IT ANY WONDER I AM GLASS HALF EMPTY//???? I feel very cheated .I am 48 my doctor thinks I will be lucky to see 60 .so much for looking after yourself .{when my so called friends were drinking dabbling with soft drugs and having as much sex as possible I WAS A THE GOOD GUY two partners in almost 30 years both married to me ..being left as I am makes me think I should have blown a fuse when I was younger .but no I worked hard and was a rare clean hard working good guy ...regarding my style of posting I tell it how it is and I have had many emails thanking me for that .I know that both myself and jon {terror} tend to be on the dark side but we have good reason .and its not fair to pretend all will be well with major surgery .sites like this would not exist without people like me who have continued bad luck .because why would anyone keep posting if they could lead a normal life ?? they don't they have their surgery and get well but they are the lucky ones .please don't let this site become like and I would love to mention it by name but I wont its a uk pain site and the person that owns it lives in cuckoo land and won't let anyone post anything negative !!! ..if you can do yoga and go shopping and have a sex life ..there is not much wrong with your back .{this is the kind of crap that's on the site ..don't take drugs do yoga ??!!and so on } SH has always been a well balanced site but I have found recently its leaning towards not wanting to hear the bad things and that's wrong the vets have a duty to the newbies to let them know what may happen .I am not going to change my style of posting I have helped many people and thanks to this site I have a hand full of real friends in the uk not just cyba ones ! .I have no problems with anyone on here but I feel like some have problems with me .there is no reason to have any problems with me for years no one bothered me then I have found my post butchered and a recent ban that was an insult and blown well out of context ...think yourself lucky if your not as ill as I am but please don't stop me from telling the truth when thing don't work out .please bear in mind I am fresh from hospital and not wanting to make any problems I am not well enough to fight my corner ...and I should not have to..
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • Like Tony (first post) I'm also 'shocked' to say the least by how a patients financial situation effects their level of care. Issues within the National Health Service in England make it a subject often on people's minds. As Tony pointed out, he pays less a year for medications than I spend every month (with great insurance) in the USA. The original posters story is so common place that we don't bat an eye here. Coming from England it still impacts me greatly. I think myself fortunate to be financially comfortable & incredibly lucky to have my pain adequately controlled. I've frequently stated that I'm a firm believer in the 'Blend' & I use every trick in the book to manage my unrelenting pain but the truth is..I could continue the most important aspects of my blend (PT, exercise, staying active & participating in LIFE) without my medications.
    When I have changed doctors in the past I have been fortunate & my new PM has continued my care where the previous doctor left off. I hope Just Duckie has a similar experience. This break in care must be incredibly hard for you. Make sure that you have all of your medical records & maybe your current doc can recommend a new one? A note or quick phone call between doctors could make this transition easier for you. That's what happened in my case. My new doctor continued with my old prescriptions while we reevaluated my care & came up with a new 'plan of attack'. It was actually a great experience for me & I ended-up with even better pain management! ;-)

    In the mean time I hope you're doing ok. There's plenty of great advise here on medication tapering & other ways of trying to manage pain. I hope you get to your new appointment as soon as possible. Good luck.
    Osteoarthritis & DDD.
  • terror8396tterror8396 Posts: 1,832
    edited 05/28/2014 - 6:59 AM
    this is one reason that i am baffled with people who seem to want to go on wc or disability or whatever. first of all, no job, no insurance. with ss or disability, one can get 75% of their pay but there is no health insurance unless one has cobra or applies for medicade. too many times i hear my life is ruined with people who go out on some form of disability and that is one reason albeit a small reason why i never considered it at all ever ever no matter what. i figure, if i can work others can too. it is hard for me, and this is a personal opinion by the way so dont go ape over this, but it is my opinion that people can work if they want to. like i have said hundreds of times, there are people who lose arms legs or both and still work. others cant work or dont want to. i think that people dont want to work sometimes even though they can do it, not all but some. and if one cant work, one can get retrained with a new job to compensate for ones disability. so with all of these factors stated, i just dont see why anyone would go through the hassle, monentarily or socially or whatever to go on disability. there is no way i would do it no matter how much pain i am in. its hard to believe that people trying to get disability or whatever do not know what will happen to them. some act surprised that they are broke and have no health insurance. i am baffled by people who are not aware of these problems by going out. one more thing that keeps me working, it is my self esteem. if i did not work i would feel that my chronic pain got the best of me and i gave up. there is no way if would want to feel this way. i would rather work than give in to the pain and i would think of myself as a loser if i did. this is not how i feel about others but it is how i would feel about myself. there are too many people on foodstamps, disability or welfare now. this is the way that our society is headed now and i do not like it. it is now too easy to not work.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • I really don't think that (most) people want to, sometimes in life we need a little help to get back on our feet & that's what these services are there for. I think 'But there for the grace of god go I..' (that's just a saying not a religious thing)

    Because of my health I couldn't do food bank so my husband went. Obviously I've told him what it's like helping people but he's still shocked by the reality of it. We are so comfortable in our lives! It's now 1 in 6 people who qualify for help. They aren't looking for an easy life or handouts. In so many cases it just circumstance & I find myself worrying how many are put there in the USA by medical bills. We're just so spoilt in England.
    Osteoarthritis & DDD.
  • I love this site for so many reasons, mostly it's the people I've met. This isn't a place for just new pain sufferers to pop in & ask a question, it's a community, a family & we all bring very different life perspectives & spine experience. I appreciate ALL sides of the story & don't want everything masked through rose tinted glasses. I know it must be very hard to monitor that balance sometimes but we're all doing ok, aren't we?
    Osteoarthritis & DDD.
  • Lmr106LLmr106 Posts: 119
    edited 05/29/2014 - 9:30 AM

    I would really like to retrain for a new job, but I haven't been able to find services. Do you know where I could possibly get started on this? Thanks. So far I have looked on my states government website and also the county website where I live.
    Just Duckie, I am so sorry to hear what you're going through. I wish I had a solution for you. The only thing I can think of is for you to talk with your most recent doctor, the one that is prescribing the Oxy, and see what their recommendation is for your new situation. I hope things get better for you soon.
    2000- spinal fusion, complete spine due to scoliosis
    2012- pain began, started treatment for chronic pain
    2013- install of pain pump, procedures to address complications
    2014-blood patch, spinal fluid leak
  • First, Tony, I think you are still handsome! I don't care what anyone says! And you aren't alone in your corner, not as long as I am around.

    Now, Just Duckie, if you can't afford your meds, most pharmaceutical companies have a program for people who can't afford their meds. Just look them up on the internet, call their customer service line, and they will most likely help you from there.

    As Sandi and Tony both have said, you ARE early in your recovery. You will probably always be in some pain. But it is too soon to tell. I was in bed for 4 motnhs after mine, and still in excructiating pain at 8 months. But from there it got lots better, and today I am considered a success story. On the other hand, there are those who don't fare as well. Try to stay positive, follow Dr's orders, and give it time.
  • Terror, I am shocked to see such narrow mindedness in a grown individual.
    I injured my back AT WORK, 10 years ago. In the USA, this falls under WC (workers comp). No matter what I wanted to do about it, which was to get back to work asap, I was forced to follow WC protocol. I was making over 100k a year, 4 children (ages then were 14, 13, 11, & 10). I went from my salary to my wc cap, which was a joke compared to my income. I went through 80k in savings, lost my house, spent my kids college money, lost my best years of my life, lost my health. And soon, my life.
    I have had multiple surgeries, all failed. WC runs out after 2 years and then you get nothing from no one, unless you apply for SSI.
    After my last major sugery, 4 yrs ago, I immediately knew something was wrong. It would take me 10-15 horribly painful hours to have a bowel movement. I instantly reported this to my surgeon as possible CES to which he didn't believe and said it was opiate related. They did the special cats with the dye etc etc and found no CES. I was then sent to a specialist for anal problems, and this guy said I was making it up in my head, psychosomatic. When my reg doc got the report, I was shocked to hear this "specialist" that did a colonoscopy as well as other tests decided that I was manifesting problems. When WC approved more tests with the same specialist, I was happy, because he would do these more detailed tests i.e. anal monomatry, nerv conduction, etc...and he would see that there really is a problem and help me. HA!!! I was wrong. I was crying and begging him for help and his response was "you haven't received mental counseling yet?" I couldnt believe what he said to me and....well....they hadto escort me out out of fear that I would hurt him.

    Fast forward 3 yrs to around 6 months ago....which, now, WC denies every request for any procedure.....I was now labeled a nut job "trying to milk the system"....ya, I pretended to have bowel incontinence and severe pain only to have doctors stick everything under the sun in my butt while I "MILK" our govmnt out of 12k a year to get ssi, throwing away a 6 figure income. Sounds about normal. NOT. So, I'm figuring, I'm gonna die on the toilet like Elvis, because the doctors think im nuts....I have a stroke from the straining in agony on the toilet. It was then that my other insurance (medicare) doctors, totally unrelated to wc, decided something has to be wrong because I am only 48, in great shape (not fat), don't smoke etc. A doctor comes in, that was not even a specialist in proctology, asked me what was going on....I told him, he gave me a rectal exam and immediately new what was wrong. He sent me to another surgeon that gaveme botox in my butt which was a miracle for 6 days and then didnt work after that. Why couldn't the wc doc, who is a specialist, do that? Because of the wc system. It turns out that I was right all along and have CES, but it has been 4 yrs since onset of TIT (terror in toilet), so I knew that I was in trouble. I have had 2 stimulators installed, hoping to help the stroke causing bowel problems, but sadly no luck. Now my life is in danger, I wear diapers and spend most days screaming in the toilet all because they didn't listen to me in the beginning when this all could have possibly been avoided.
    The wc system failed me because some arrogant doctor failed to abide by the hypocratic oath, that all doctors pledge to uphold, because he felt I was faking it. I have paid with my life due to a failure in our work comp system, not because I didn't want to work just so I could lose my home and everything I owned to suck the measly 12k or 15k a year from ssi!!!!! Who would chose to do such a thing? In your eyes, apparently, a lot, or most people just aren't as tough as you are, going to work while you are still in pain. I commend you for that, I did the same.
    Either I went back to work or starve...now I am unable to leave home to go to work, I barely can make it to doc appts., I wear diapers and my condition is only worsening. I don't think anyone who is gamefully employed would choose to go through our government system. I think you may be mixing up your government assitance stereotypical thoughts with gov aide, wic, food stamps, unemployment, or whatever else.....they are different depts. Take it easy on the "majority" of patients on here, cause most of us are stuck in this horrible work comp system from our government.
    my 2 cents...now I have no cents. LoL sorry, I made a long story longer.
    p.s. to give you an idea of the pain I go through daily....I passed a kidney stone(if you have heard, they are extremely painful) about a year ago whilst on the toilet, and it was no different from what I go through everyday. So everyday, for me is like passing kidney stones while I have a bowel movement. I am amazed I have lived this long.
    In conclusion....Avoid surgery at all costs, if you must go under the knife-stay positive, if you are spiraling out of control-as I am, NEVER-EVER give up, never give in, always try for a better tomorrow, and be good to each other, we are all suffering in here (spine-health).
    Slainte' Michael
    never ever give up!
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