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Still out of work D/T constant unbearable pain (nurse), Double laminectomy done March of 2011

Started by rene on 03/01/2012 11:12pm

Hello fellow spine sufferers , This site is very helpful to all the new friends, Ive returned , havnt visited this site for about 6 mos., and found it very helpful in the begining. Ive returned for the encouragement because I am declining insted of getting better . My diagnosis is Failed back syndrome. Radiculopathy, DDD, L2-S1 some have annular fissures (tears), herniations and or bulging discs. Is there anyone out there w/DDD and having it progress faster than expected (the concaving and pain) Ive already shrunk an inch in less than a year.As far as the pain, nothing works, or u take 1-2 extra doses on days U hav no choice, and then U run out and suffer till your next apt. Many of us R going to Pain Management, as far as me, its embarrising because your looked at as a narc seeker, yet they have reports and discs showing that we have just cause for this pain. Plus their Pain Mngmnt Docs and they still wont increase ur dose if needed.I am/was orthopedic nurse for 15yrs,(thats how this happened) a 468lb patient fell on me..Im always open to suggestions and willing to help those who dont understand terminology and meds,etc,,,,,,MY question is when is this pain gonna stop its relentless. Then theirs the whole psycho social part we have to go through. Pshyciatric help I highly encourage..Oh, and one more thing,,how this has not only affcted our daily regimens which have been taken away from us, the deppression and OUR familys tired of us compllaing, only a fellow spine pain sufferer can understand what we meen when we say where in PAIN !!!

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Hello fellow nurse Rene,
Nurse Nancy here,two and a half years later,right there with you.Pain every day of my life,my neck is worsening,low back very painful from the hardware.DDD only worsens with time unfortunately,we basically have to now live our lives around the pain.Just last Friday i had my social security hearing before the ADJ,now just waiting on the decision.Been a floor nurse for 29 years with most of it being in Ob,womans health ,labor and delivery the last 20 years.Had to have a vocational expert at the hearing,she really couldn't come up with a job with any transferable skills with the residual functional capacity that i have left,athough God knows she tried.At the very end she said i could be an appointment scheduler,she tried to say my skills would transfer ,although it didn't seem to matter how long i could sit,stand,bend my neck...etc etc.I had three supportive doctor reports.Found out this job is a minimal wage job,after i was making $42 /hr in a job i worked very hard in.Well ,i pray the judge votes in my favor and then i will also get a year back pay.We have gone through all our finances,and yes i hear ya about the depression,i definately need some counseling seeing that i just seem to cry all the time.Now ,who would choose this life over making what we used to make as nurses,i loved my job.Well hang in there Rene,just know i am here for you.Have you applied for social security yet,i can't remember from your previous posts.I am getting ready to tell them just go ahead and do the neck surgery,just so sick of all the pain,numbness,tingling every time i sit ,or try to do the simplest things.Keep me posted.
Blessings,
Nurse Nancy

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Gosh this sounds like my life reading yours and nurse Nancy's post. I have suffered with horrible back pain and neck pain since my early 30's at which time the surgeon's I saw then wanted to do surgery. After extensive researching I decided I would forego the surgery till I could no longer move. Well that occured last year. I was having severe issues with walking and having falling problems. Also I was having bowel problems which made it a problem to leave the house. Accidents were becoming an almost daily thing. At that point I saw another surgeon of which he said "your back is not the worst I've seen but what is going on with it is as bad as it gets" I have DDD, spinal stenois in varying degress, bulging discs at several levels, a mild form of scoliosis, several discs that have just disappeared. My whole spince from my head to my tail bone is a huge mess.

So with that visit to the surgeon he said I had no choice but to have surgery. So as of Aug. 2011 I have a double laminectomy and a double discectomy of the L3-4 and L 4-5. The surgery went great! But two weeks later I was readmitted to the hospital with severe infection in my spine. I have never been so ill in all my life. Debilitating headache and vomiting to the point where I thought for sure my head was going to blow competely off my shoulders. I then spent 2 weeks in the hospital with IV antibiotics which brought on a whole new slew of problems. So there was finding an antibiotic that didn't carry the problems.

I then go home 2 weeks later only to battle with homecare people etc about my care. It was a total mess while feeling so ill, it was so insane! At this point I wished I had never had the surgery done.

But here I am almost 9 months later, worse off than before the surgery. Still on antibiotics. Turns out the infection went on to the vertabrae. My pain is so unbearable some days I just want to take my lower half of my body and pitch it out in the traffic. Sleep does not exist in my life anymore. It's more like catnapping. My walking ablitilies have worsened. My life is what I call INSANE to say the least. I've lost a lot of friends due to not being able to do the things I use to do. And I find a lot of them couldn't handle or even understand what I am going through. I honestly think they thought they would CATCH this infection.

But thank the lord for my infectious dr. He's been the most understanding one of all the dr's I was seeing. He finally sent me to another dr who said she agreed that people who are in chronic pain and it's well documented, by all means, give them something to help control that pain. I almost cried!! I already knew I would never be totally pain free, but still to hear her say those words was beyond I could ever believe. I thought I was stuck in a world of non-believing dr's. Even these so called pain dr's were of no help. I even had one scream at me at our appointment when she asked me what my pain level was at it's worse. I said it can go over a 10 on a really bad day, She screamed and slammed her clipboard on her lap and said "that's impossible! No one has pain that bad!!" LOL!! At that point I was ready to give up.

My whole point is: once we have these back/neck issues, our lives will never be the same. Our friends and family will never be the same. We have to learn to live a whole nother lifestyle. I am now seeing a therapist. My life before all my back and neck problems was a very very busy one,

Nina

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I am 50 years old,recently diagnosed(5/11)with ddd & kyphosis.Severe osteoarthritis is just beginning 2 kick in and both foot's large toe joints are swollen & painful 2 walk on.My ddd + k struck me a major blow on 3/11/12 and I came out of hospital 3/28/12 to 50% less mobility than when I went in.I am now down to less than 25% functional capacity.I have seen the MRI and bone density scan and most recently,a set of x-rays I purchased from the new chiropractor I am enlisting the help of 2 try and manage my plethora of problems.The recent x-rays I obtained show bone spurs all along my spinal column,some almost 1/4 inch long.My feet have not given me 2 much trouble yet,as long as I keep up 2 the quarterly cortico-steroid injections.If my spine is any indication of bone spurs elsewhere in my body,then how will they affect my walking in the future as my condition is changing on a daily basis? spinelessinalberta

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Unfortunately, I know your pain all too well Nurse. I suffered for 3 years with horrible back pain and sciatic nerve pain in my left leg but wouldn't even get it checked bc I was a single Mom of 4 kids with no child support. I just couldn't afford a Dr saying I needed surgery. I married in August 2011, and went to get a MRI in Nov 2011. It showed I had Spinal stenosis, DDD, bundling of nerve ends at my spinal base, multi-level disc herniation, and multi-level facet deteriation. 2 of which were barely inside the spinal column and one going each way, pinching my sciatic nerve. Dec 2011, I was scheduled for a double laminectomy and double discectomy of L3-L4 and L4-L5. I woke up from surgery in undescribable off the pain scale pain in my RIGHT leg. Dr said it was just swelling and would go away. 4 months later, the pain is still there and my back gives out now every time I bend down or scoot back on the couch or car. He said I would more than likely never return to work due to being ruled as FBSS and needing another surgery for a 3rd herniated disc. I had to quit my job that I had worked for over 3 years as a supervisor. As I mentioned I do have four kids and new husband and feel like SUCH a FAILURE to them. I can no longer keep my house spotless, take the kids to baseball practice, or enjoy the small things as I use to. On normal days, all I want to do is curl up on the couch (bc since the surgery I have NOt been able to sleep in bed), and disappear. I'm so tired of being in pain, tired of relying on my husband completely, and tired of complaining, which I feel like nobody wants to be around me anymore bc of it. I was always so strong, and so independent, that I now feel like I've lost all hope in being normal again. I'm only 29, and I want more kids with my new husband (he adopted my 4 kids from a previous marriage), but the Dr says that the amount of pain my body is in, that my body may miscarry the baby if I did get pregnant. It's like all my plans have been erased, and that my life now revolves around my bottles of pain killers, muscle relaxers, and anti inflammatories.

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What to say, what to say?
You peolpe are troopers. your stories are familiar to mine. As I was reading them them I was nodding to myself thinking YES, that's exactly what I feel like. When asked what my pain level is, I say, "is that with or without meds?"
Anyway, I had the multi level fusion and discetomy in 2007. I considered it a success because I went from morphine to lortab. (That's a nightmare I wont go into right now). I went back to the same job with no restrictions, ( I still don't understand that ).
In 2011 I was injured while operating a snow blower at work, ( upper back ). I had the trigger point injections etc. Those didn't help, so W/C sent me to a W/C sports Dr. Here's where I had to laugh, ( that or break down). Here's the work restriction he gave me, ( after me telling him that just using my arms for an hour or so would cause the worste spasms in my back I've ever felt, and the stabbing pain in my ribs felt like..well, like I was being stabbed), Here's what he wrote; No Lifting More Than 30 Pounds Overhead. Now I don't know about every other woman out there, but to me that sounds like a lot...Within 2 months I had used all my sick leave, all my vacaction and my supervisor wouldn't work with my shift so I could go to P.T. ( off without pay ). The week I quit my job, I had hardly slept I was hurting so bad. Scared as to where this was leading, (I'd been down this road before). That last day at work I just couldn't make my feet move, not literally, but knowing the pain was comming as soon as I started, I just couldn't make myself do it. I couldn't make myself hurt myself. I walked into the office, laid my keys down and said, " I Quit." I had worked there 9yrs.
I'm still hurting, just not as bad, well as long as as I don't do hardly anything. Still playing the waiting game with W/C Dr's.
I too feel like I'm going crazy. I do thank God for my family Dr. She knows me and if I ask for stronger pain meds, she'll give them to me. Having said that, the being hooked on morphine and coming off that cold turkey after my fusion I tend to opt for pain most of the time. It's a game I play with myself. Sometimes I just can't stand it and take the damn meds and then do to much around the house and then suffer for it. Living with pain... Who the hell thought that one up??? At P.T. I was told that hurt doesn't equal harm! I told her that the dentist doesn't have to use novacaine for a root canal either, I won't "hurt" him a bit! She told me I just have to keep working through the pain, no matter how much it hurts! WHAT! I did that before my fusion when a Dr. told me to, " Come back when you can't walk!"
Can you tell I get a bit wound up retelling this experience.
I'm so glad I found this place where others are going through the same thing, it makes me feel a bit less, "nuts."
I look forward to reading how it's going with you all,
me.

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The world is up and I am down,
Treated like an injured clown,

Every step painful, every night long,
Wonder which "treatment" went wrong,

The future and hope all seem dark,
With my back tattooed by the surgeons mark,

Will the pain resolve? Will I be normal again?
Reliving the same questions, like a murders sin,

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Pride,
I guess we should all be happy that, "there's a pill for that!" What a life eh? I spose next time I see the W/C Dr. I should tell him I could always work from my bed, coz that's where I spend most of my time these days... For some odd reason I just think that's funny.
Hang in there people, it's all we can do.
me.

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Dear Rene:I am a fellow so called "failed back syndrome"sufferer,and am constantly asked questions like,"why do you need that much"from skeptical Drs. who have never seen you cause your doc's out of town,whatever.I have given up trying,as I had a major slide in March.I had lost 25%+ of F.C. from Nov./09 2 Jan./12.On March 11 I attended the local er as I was experiencing agonizing pain upon ingesting solids,all investigations in2 upper GI problems were negative,so i finally convinced my family doc it was not GI but ALL spinal in origin.that,coupled with a set of x-rays from a renowned local chiropractor,referred by a charge nurse in said hospital,was enough 2 convince my doc.so,he sent me home 2 convalesce with percocet,butrans/buprenorphine 10 patch{used primarily 4 cancer patients}+ hydro therapy.this is great 4 your back,i get instant relief,no matter the water temp[not 2 cold,you'll stiffen up bad!]& this 1derful chiro in Red Deer,some close family & i will continue my search 4 answers which should keep me sufficiently distracted.i'm afraid the pain will never stop,no,but in some things u can find degrees of relief if u remain religious in your habits,don't say,"i don't feel like it 2day,i'll go longer 2morrow.that's where your brain comes in really handy DISTRACT anything,i find stimulating conversation very distracting as u must remain attentive as well as engage in the conversation.i know what it's like 2 convince some1 that u NEED all those pain meds.this buprenorphine patch is certainly the relief i was looking 4 so i can get rid of that damn percocet!i still need it 4 road trips & when i feel like walking more than 1 block.i've had a # of docs ask me now on this 2.5 year journey 2 find answers,"why are u still walking?"i don't know,either,i have 2 take full advantage now,be4 i can't anymore.cont'd

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rene:cont'd;u have 2 convince not only the people u know,but the very professionals u are seeking help from!this i just shrug off as not being in my shoes.i smoke alot of GANJA as it takes your mind elsewhere,u are much more easily distracted,and your attitude goes out the window!i'm still in alot of pain,just don't give a damn anymore!if you're not in2 pot,2 bad cause it's already helped me tremendously in building a mental army 2 fight the hordes of attacking pain soldiers.my viking warriors do battle endlessly while i sleep & re-energize 2 face another pain filled day.family is a whole other matter,in my case my wife of 22 years has decided 2 give up on me as i embark on this trek,this new challenge & journey of self discovery i am forced 2 embark on,now not alone,but without my constant companion of 23 years and all 5 of my children & 4 grandchildren.i don't know about u,but i know i can count on my kids 2 help wherever they can,already illustrated by my 18 year old daughter by taking her fatherin,who is just embarking on her own journey called life.they are your most valuable resource.if they truly love & care 4 u,they will remain by your side thru anything.all my best,rene,i'm prayin' 4 ya! spinelessinalberta :) i look @ it this way,it can't get any worse! keep your chin up.positive thinking is key!!!!!:):):):):) ttyl ok?

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of course,now i read the remarks below rene's!k,here goes.severe ddd + kyphosis +severe osteoarthritis & probably all bone structure involved,now @ 25%- functional capacity,percocet,buprenorphine patch,stool softener,metoprolol 4 BP & HR,elavil,cymbalta,going 2 seek slow chiro manipulation + hydro-therapy(gives instant relief as long as submersed)feels like pressure building inside the longer i stay in the water,BUT IT HELPS,anything 2 distract,distract,distract the beast(i call him loki after the norse god of mischief & mayhem)but seriously,the mind is a powerful thing when used properly.there are many forms 2 pursue 4 pain relief,i plan 2 outline a book on pain management,soon as i finish the self-help manual i'm currently working on.so,i guess in a nutshell,i'm trying 2 distract myself from this horrible disease slowly,ever so slowly but inexorably on its path 2 i do not know what end,so i continue my search 4 knowledge on this disease,& try 2 enjoy the turkey dinner 2morrow. spinelessinalberta :)

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Hi Rene, I have mild DDD though it certainly doesn't feel mild with bone spur and prominent facets and disc bulge at L4-L5 and bone spur at L5-S1 which replaced a herniated disc and anular tear. It just keeps getting worse and even the EMG says my sciatica isn't coming from my back thought the symptoms happened at the same time 4 years ago when I stopped working as a Urgent Care RN after heavy assignments and on disability right now and i'm 51.

My Dr. said they will not do surgery on me until I can't walk and it's getting to that point but even then there's nothing that surgery can do for this as 4 Ortho and Neurosurgeons have told me.

Doing some pelvic exercise on the floor pulling my navel going toward my back and marching while laying down with knees up helps and sitting with holding in my abdomen.

As for pain meds my Dr. only gives me slow release narcotics and try to take 2-30mg in the morning and the other 2each 6 hours apart for any kind of relief. I had to return to my Dr. frequently just to get this amount of MS Contin each day and one Percocet for BTP. I couldn't imagine having to go a few days without any meds at the end of the month like you have to. I even try and have an extra week of meds left over in case of breakthrough pain and emergency.

Do you go for Epidurals and facet joint injections or do any water therapy to help? I'm going to my 4th Pain Management Clinic at a Specialty clinic at a hospital to see if they can help somehow we just have to keep looking. Take care. Cheryl

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TO UPANDDOWN N SPINELESSINALBERTA,,, too funny I was scrolling bach n stumbled upon our old blogs,,I honestly didnt remeber u guys..( sorry,ment no offense) cant bleive u gus r still here,,,then again I returned..haha Yup, to hear all the newbeis that have joined n there so young..I returnned cause I had my 2nd surgery 5wks ago,,still in same NO physical state....Im just havn a hard week. Glad to chat, U Put the small, n kckd me in my ass to say WAKE UP, you should b use to this by now.....but its always a fight............sorry 4 the deppressing blog..RENE :(

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no prob,Rene!I kinda figured u just had 2 go back a bit!i am just keeping ion with the same battle,not gonna give up in any way,shape or form!still got my csense of hee haw intact,actually stronger now that i can deal with whatever it throws at me!God keeps mer goin' more than anything,i do believe!He stays with me constantly,& my daughter is close 2 where i am staying,so she is also a very big help.I am headed home at the end of the month,guess u didn't hear about the homelessness & all of that,maybe it's better that way?!TTY SOON,visiting right now,will gwt alot more comp time L8R!spinelessinalbertaJustKeepSmilin' :) JesusSaves! P2

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That is precisely what I feel like I'm being treated like now,that I won't get any REAL help until I cannot function at all anymore.I have had no surgeries,as of yet,none in the near future,either,is my thinking.No surgery,no recovery from surgery.The changes that I made in my diet,along with regular exercise & walking,Yoga & aquatherapy is the road I must travel now.My attitude remains on an up beat,positive things happening right now,gonna go back home 4 the 1st time since March 27.Spiritually I grow & learn more about other people more than anything.I am not alone in my struggle,I have a faithful wife 2 lean on now,my mobility decreasing,it seems,daily now.God is omnipresent as I must need The Father's hand on my spine 2 continue on this journey of self-discovery & Spiritual Awakening.Attitude has alot 2 do with why I am still upright,Doc says whatever you're doing,keep doing it!spinelessinalbertaJustKeepSmilin' :) JesusSaves! P2

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Hi Spineless, Thanks for your encouragement,Yes my family very much has GOD in our hearts,,glad to meet another person reaching out to the Lord for help,,because I do and im tryin to hang in ther but its starting to wear me down n beat me,,i Feel like im sinking,,,I want my life back..Everyone here wants their life back,When is he gonna hear our crys for help cause the doctors aint...they should feel for one week ,,,what we go through,maybe then we would b treated incorrectly, and by our choice,not by the guidlines, their r exceptions in medical laws that would not incriminate these doctors for giving us the correct amount of pain mangement meds, but their to lazy to do the paperwork,,trust me I was in the field,,behind the curtains.....But some caused this due to them scribing all these years to those whom never needed the meds n now they r cautious n they forget their compassion to the deserving patient.. US. IM gonna do this for my kids!!!! (their 25 & 22 both girls) how bout u?any kids? Hope your felling good, will chat again, goodnight Rene :)

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Hi Cheryyl, I totally agree about pain management,,,,Dont you feel its worse because we are Nurses, Every Facility I have worked in ordered the correct pain meds,, Why are they not in their offices,, when we would call them on phone an ask approval for pain meds they would leave it to us mainly,,and yes order it in the facilities,I find it so frustrating,,I just want to be comfortable, not drugged up. Rene :)

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The only ways I get comfort now are in the shower,pool or bed with hot blanket(electric,invaluable!)pain meds do nothing,anymore.Attitude & how I express my anxiety & stress is key,now,more than handling pain 4 myself.The 2 guys renting rooms alongside me are a couple of little boys with no 1 to discipline them properly,they just CANNOT seem 2 do it themselves.Both complaining & negative all of the time."Oh,look!It's the All Negative Channel!I said 2 myself this am,just be calm with the little ****,no need 2 put yourself in more discomfort,that is sooooo counter-productive!Just sit there & sip my coffee,hmmhmmmm!He was a tad quieter 2day,maybe trying 2 gauge my reaction because there is none!Can't walk but 1/2 a block now,at a time,gotta stop,sit preferably,don't always have the choice,so leaning has become useful,as well.Go slowly,1 foot in front of the other will get me where I'm going!A little quote 4 the day,as I was pointed 2 this 2day,Proverbs,Ch.15."A soft answer turneth away wrath.A wholesome tongue is a tree of life,but perverseness therein is a breach in the spirit."I was pondering a question,maybe some 1 on here has input?About your parents,it says 2 honor thy father & thy mother,but what if they never made a real effort 2 teach you anything of value,recrimination,criticism & emotional,verbal abuse & periodically physical violence?Do I still honor them?Because they were both engaged in idolatry,money,she lied 2 me,used me 2 take attention from the fact that she had forged his signature on many cheques over a period of 6 months.All he did was blame me,all me,16 years old.My true Father is now instructing me,guiding me along the Righteous Path.I am the clay,You are the sculptor,Lord God! spinelessinalbertaJustKeepSmilin' :) JesusSaves! P2

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Hi Rene,

Havent seen a reply from u in awhile, was just wondering how u been? I responded to your last post awhile back and was just wondering if u have any suggestions, thanks

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Paul,
I honor my mother and father for bringing me into the world. I understand now that they did the best they could with what they had. I also understand that some things are not for me to understand. At some point I realized that some things are not important. Having a hard childhood makes me less naive, less judgmental, and I hope, more compassionate..."There but for the grace of God..."
Hope you have a better day today,
Janet

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I will not have any better days now,Janet,1 just rolls in2 the next like a shuttle that runs 24/7,except pain is the fuel in the engine.My parents were not so limited in their resources or skills,they chose 2 push me out in that situation.But 4 the grace of God does not enter the picture,as my father thought the world started & ended with him alone.It did make me a better man 4 it,in the fact that I did not do the same 2 my kids.My level of compassion is very high,but getting tested daily,as people who would come 2 me 4 help when I had the resources 2 aid them,they have apparently disappeared from the face of the earth when it is I that needs assistance.This is how I have been treated 4 my entire life,& I am really shocked & more than a little dismayed that I appear 2 be invisible,now.God is with me,of that fact I have no doubt,but as far as any 1 helping me out,forget it!I continue 2 pray 4 my healing & prosperity,but so far,no go.Patience,my son,is what Jesus tells me daily,so I must wait some more,I guess.I have 4given my parents 4 what they did 2 me,but that does me no good as far as trying 2 become stable physically,mentally or financially.Money is non-existent in my life,still waiting 4 word from 1 organization & re-applying 4 another.Frustration is not the word,anymore,more like hopelessness.It's as if I am so far gone physically that no 1 wants 2 bother with me,just a waste of time as there are people in better shape than I,my state not worth the trouble.spinelessinalbertaJustKeepSmilin':)JesusSaves! P2

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Hi i am a 49 yr old nurse with spinal stenos L3/4 4/5 and sme disc bulges i am due to return to work after 6 months out and would appreciate any advice or encouragement i am not in usa am in ireland and work in elderly care by the way my pain is improved and would appreciate any advice

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Hello to everybody, I am so glad to find this support group. My original injury happened at work as well which was over 10 years ago. The first type of treatment that was suggested is a surgery that would have been so invasive I said no. Before I slipped and fell I was always so active playing tennis and jogging long distances etc. Not being able to do those things any longer can be quite sad, as I am sure you all must feel the same . When my long time family doctor referred me to pain management reality set in concerning many life changing I was needing to make. I am finding gentle type yoga is so helpful. Yes, only a fellow pain sufferer can understand all that is involved in this journey. When I explain to family that I need pain medicine to just walk they really do not understand. This support group is great. Thanks for any advice any one might have.

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