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Post Surgery ( 3 ) Chronic Pain

Vicky ODonnellVVicky ODonnell Posts: 25
edited 06/11/2012 - 8:31 AM in Lower Back Pain

Having had 3 back surgeries.. First one the hardware fell apart in my back ) second to take out ( first two the same surgeon. ABSOLUTELY NO BEDSIDE MANNERS, COLD AND TOTALLY UNPROFESSIONAL )and 3rd to have another fusion ( the first one wasn't fused in the right areas according to the new surgeon), at another hospital and different surgeon). Needless to say, they all failed.
The pain I experience every day is off the radar...

I also have fibromyalgia, chronic fatigue, osteoarthritis and tendonitis. I need help.....

Depression Meds, Pain Meds, Shrinks, you name it, are all part of my daily existense. How did this happen? I wonder ever day. Several car accidents that I was rear ended in, gymnasitics, competitive dancing, roller skating, bartending. All "normal" activities for a young kid to teeen, right?. I have 4 children and a husband that have seen me go from being active, happy, energetic, to being depressed and in pain every day.

I have seen every type of doctor out there. Nerve blocks, injections, therapy ( physical and mental). I am by no means whiney or a "big baby". I try my darndest to keep how I am feeling inside. I even just lost 38 lbs hoping this would help me...no such luck..However, I can wear a bikini again after all these years..( See, I still have a sense of humor...)

I am a human barometer. The weather, ugggh, dont watch the news...call me.. I can tell, like many ppl, when it is going to rain, be humid, etc...Ridiculous.

I am sitting here tonight with great sadness. Hoping for an answer..Just hoping that someone, somewhere will have a suggestion for me. Oh, yes, and a month ago, I found out I also have a spinal stenosis on the right side of my L4-5 and they want to do surgery again to take it out but I am scared to death...Both hospitals I stayed in were horrific with the bedside manners. I just couldn't believe how they treated patients...

I went online to research EDITED out of desperation for help. Does anyone out there live with all the above and if so, please help me by kindly telling me what I should do. Every day is a battle. I used to be an "early bird" never waste a moment of the day. I own my own business and have had to change from meetings scheduled at 8-9 to 10-11. Now, It takes me several hours to get moving. I have also started going to bed really really late just cause I know what the next morning brings with pain...
It's a no win..Very sad and not a lot of faith in medicine/doctors right now....
Will there ever be a day I will be pain free?

Doctors name and contact details removed by forum Moderator (paulgla). We do not permit publishing specific doctor's or institution names and contact details.



  • Welcome to the board. I am sorry for the reasons you have found us.

    Do you know why the second fusion failed? I gather the hardware is still in your back, but it did not help your pain. Is that correct?

    I had a fusion for spondylolisthesis and stenosis at L4-5 about 15 months ago. I know how painful it can be, and you have so many other conditions too that result in pain. If I were you, I would be exploring options to relieve the stenosis. It will only get worse as you age.

    If you have had bad experiences at the local level, keep searching. You might want to check out a university teaching hospital or one of the large spinal clinics. The EDITED is brilliant in so many areas, but, personally, it would not be my first choice for spine surgery.

    Also, get several opinions from fellowship-trained spinal specialists. This can be either an orthopedic spinal surgeon or a neurosurgeon who has additional training in issues of the spine and back. I found it useful to see both orthopedic and neurosurgeons as I found they approached things from a slightly different viewpoint and recommended slightly different surgeries.

    It sounds like you are a spunky personality. Do not give up. Perhaps your body will not accept a fusion, but maybe there was a reason for the failure. Please keep looking...at least to deal with the stenosis.

    Keep posting with your comments and questions. This board is full of wonderful people who are happy to share their knowledge and experience.

    xx Gwennie

    P.S. How did you lose 38 pounds??

    Doctors name and contact details removed by forum Moderator (paulgla). We do not permit publishing specific doctor's or institution names and contact details.
  • Welcome! I agree with Gwennie that I'm happy you found us but I'm sorry that you needed to find us...

    First off, CONGRATULATIONS for losing that much weight while suffering so much! You are definitely an inspiration! Also, it is sooooo refreshing to see someone persevere through the pain and uncertainty with an attitude like yours! I hope others learn something from you!

    Please keep posting, messaging, and getting all of this out. It will only eat away at you if you don't get it out! I know from experience. I started becoming VERY bitter and feeling quite helpless and frustrated (and I'll admit, I was having my own private pity party too). I started to see a counselor last year and it was the best thing I could have ever done for myself. I was able to get it all out without feeling like a emotional burden on those I love or being judged. Some appointments I just cried, some I was able to make plans for how to go about finding the right care and how to accomplish the major things I need to within my limitations. It helped me greatly to be able to say anything, and I'm definitely a lot less upset, angry, and bitter about it. It gave me a sense of empowerment and brought back my old self, well, emotionally that is. Granted, I still have my down days or periods when I'm depressed about it all, but it's a lot less intense than it was when I was holding most of it in. You say you do your best to keep it in, but this isn't helping YOU! Get it out!!! If I ever get to a point where I'm feeling really bad again, I wouldn't hesitate to see a counselor again. I went for about nine months the first time, but I know better than to let it build up for years again. This is just my experience, but I hope even a tiny bit of it helps you!

    Haha, I love the whole weather thing! I had knee surgery when I was 15 and my back is just plain severe. I've been joking lately about starting a whole weather program with people like us sitting around a conference table deciding what the weather will be. "Well, my knee says it's going to pour!" "Oh yeah, my back says it's going to be high humidity with a lighter drizzle!" Hahaha, of course, after we put all of our thoughts together, we'd give the official report! Want to join my weather forecasting team??? =))

    I wish I could offer you more help! I'm always here to lend some eyes/ears for whatever you need! I would never judge you because I know how this all just plain sucks! It took me three years to find the right doctor to at least help with my pain, but I finally did, so I can tell you to never give up hope! I found my luck at a university hospital, and I'd recommend that anyone in our situation goes to at least one teaching hospital. After many high hopes and disappointments, I know how hard it can be, but it also makes it that much greater when someone has an answer, or at least commits to helping in anyway they can. Never give up hope!

    Much love and understanding,
  • In all of my blabbing I forgot to tell you that ALL of my problems are directly related to sports, mainly gymnastics for 9 years 6 days a week. GYMNASTICS IS THE DEVIL!!!!!!! Oh yeah, and my genetics didn't help, but still, it's the sports that really did me in..........
  • It's rough you're going through all this. I hope you can get treatment for your spondy and they can remove some scar tissue while there? Anyway can you let your Dr know about your overnight pain and how it hurts in the morning to get up. I take MS Contin which is slow release med that works so in the morning it's not as difficult to get up in pain. Although I do have pain it's not as bad as it was without pain meds. That's good you lost the weight and can now fit in a bikini. Have you tried aqua thrapy at all? I heard it's easier on your joints. Take care and best wishes for your Dr appt and discussion on surgery. Do let the Nursing Unit Administrator know if there was any problem with your care in the day when she's there. They oversee the Dr and Nurses on the Unit. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Welcome to SH :H You've arrived at the right destination. I understand what you're going through and I'm sorry that your surgeon doesn't have a heart,and you suffered through terrible hospital stays. If you have another surgery, ask where it'll be done so you don't fall in there again. Oh yeah, switch surgeons if you can. ;)

    I'm not sure where you should go from here, but I think you should find a pain specialist like Charry recommends. My PM doctor's like primary care for me because they handle my treatment and refer me to specialists when necessary. What has helped me is having a kind, caring NS who is easy to talk too.

    Oh, I remember gymnastics..I loved it so much. I had to stop all athletics due to be stricken with arthritis in my teens. When we're young we think nothing can stop us. Honestly I didn't see back troubles coming because it didn't run in my family. My husband and I have it; he's doing ok now but my problems are severe. Two surgeries later, I still have chronic pain. I have permanent nerve damage in one leg and recently found out about post op scar tissue after I had a 2 level TLIF.

    Well, Vicky I hope you find this community helpful because everyone is so kind and we help each other out. Someone is always here when you need to talk. Take care :)
  • I have to say I was totally amazed and surprised when I saw responses to my post. Thank you so much.
    I wanted to let you know I have seen 2 PM doctors. The last one I saw that did the spinal block asked ( well, I actually had to call his office ) if it worked. I told him "no" and was a bit upset about it. His words were...I guess I have to send you back to your surgeon... It seems absolutely nuts..
    I will take all the advise I was given today and move forward... Ya know, I have never really gotten into "deep" emotional therapy regarding my back and the stress it puts me under..I have always just talked about all the other crap that comes with it. Feeling bad about what my situation has done to my family. yada yada...

    I did go see a NS after the first surgery failed and that NS said " I would have never done that surgery on you..
    Heres the thing..I was told to go on line, study, read and send relevant questions on the EMMI site. All about the PLIF I was about to undergo. Ok, jump 3 weeks to surgery. I have it, doc comes in, I say, how did the PLIF go.."Oh, I didn't end up doing that...Well, what ticked me off was I have NO DISCS in the lower back. All like sand so he told me he was going to insert cadavers (sp?) as a cushion in with the PLIF. HAHAHAH he didn't. He fused me bone on bone. Also fused the wrong vertabrae ( according to the second doctor).Talk about pissed, sad, angry, you name it.
    It is amazing what we will believe to get some type of potential relief and words of encouragment. The first doc guaranteed I was 100% fused even after the hardware was taken out. I was crying hysterically for about 20 minutes, couldn't bend, etc. and this man just looked at me, not a twitch, nada. Second doc, different hosital ( teaching doctor to boot )completely disagreed. Not only not fused but the wrong surgery had been performed WHAT???? OK so there I go, in 07 for another surgery, 3 years in a row, same month. Bottom line cause I am being too long winded and your thinking "does this chick ever shut up" GP,GYN, Shrink, OPS, NS, PMD, Chiro, Priest, Friends, Family, Dogs,, Cats, horses, etc..No one, not one has made me feel as optimistic as you all have on this site...THANK YOU SO VERY MUCH. It's rather odd, I feel like I know you all already.. I am here for you too. Need to learn how to send PM's and add "buddies" any assistance would be sooo nice.
    Hope to hear from you soon. Thanks MeyDay..xoxoxoxo
  • Gwennie,
    YOU ROCK !!!
    Thank you soooo much. The weight, well, no pop, no bread, pasta, junk food. A lot of fresh veggies, greens, fruits,broiled chicken, fish, turkey and TONS OF ICE WATER WITH A LOT OF LEMON...ALL DAY LONG..4-6 small meals a day and EXERCISE. Once I cut all that out, and really started paying attention to what I was putting in the ol' body, the weight literally started dropping off . I am 63 1/2 inches tall and was 168. Always have fought being a little "pudgy" since my back pain started in 1989. I went into the doctor and got a bad report on Blood pressure and bad Cholesterol. Doc say " if you don't do something soon, your gonna die" Serious? That next day I started, scared I would never have the willpower, and here it is 4 months later and I am comfortable with my weight. Went from a 16 to size 6. Only on TV, right? NO drugs, nothin...I am very proud. Now just need to keep up with the healthy way of living the best I can. I had a lot of support from GOD, he rocks!

    Sorry we have had to meet under these circumstances but certainly glad we did. You are ALL my angels...
  • Lisa
    What a riot. Heck yeah...I'm in..when is our next meeting and will the press be there? hahahaha.
    thank you so much for all the insightful information..
    I agree about the surgery..The physc just want to prescribe meds and make sure you are not suicidal. tick tock...Time is money, ya know...
    I will definitely start searching for a pain "emotional" therapist, there HAS to be one here in Illinois. Even the rhuemetologists just shake their heads at me.."You are the worst case I have ever seen". Ahhh, the bliss of hearing that over and over...
    I am also going to call a few of the teaching hospitals here in the Windy City. They are quite a distance from my home but well worth it if I can find someone who would really care for me... So glad to have read your comments, I appreciate you taking the time to write and post. :)
    Let me know if I can ever help you out, K>
  • Thanks for the info about sleeping. I would be thrilled to be able to sleep even for 1 night, for EVEN 4 hours straight without turning repeatedly, waking up and making ridiculous hippo sounds as I move. I will discuss with my (next) surgeon...I have also asked my OPS about scar tissue and he has told me no..there is none.. Let me be the doctor and you, the patient. Well, hmm. Seems we all ( on this site) know a lot about ourselves, terms, meds, etc..
    So sorry to see all that you have gone through. Although, it is such a relief to have stumbled on this site to see their are others that have and still do experience similar things...
    What is MS Contin? and Oxazepam?
    I am going to look up when I finish writing this to you to research them..
    Thank you again and be good to yourself and hopefully you will get some relief and healing soon. Take care...
  • I see you joined quite awhile ago but I just saw your post.

    I feel your pain but love your attitude. Congrats on your weight loss. I actually got a abdominoplasty with muscle repair and thought it would help my back last year but here i am a year later with a re-herniation,a new herniation and a bone spur...on my way to a fusion. I will take your problems and make sure i ask the right questions of the surgeon.

    Did you sue over the wrong surgery being done?

    Hang in there

  • hello. i had spine surgery once wen i was 13 and was 14 wen i had to go in for my 2nd i am writing an article for a school newspaper and need people who had the same thing to talk to for it. if you are willing to talk...please reply. I am basing it off a memuear (spelling) about both of these stories. my surgery was probably nothing like any of yours but i would still love to hear more about what your conditions were and who you choose to do your surger and why you choose them. feel free to tell me anything else you have to talk about. i am a young aspiring writer who with the help of your stories....could become even more successful and graduate high school with a writing scholarship:)so please, do comment
  • Lisa, i also live in the windy -city, well i had two major back surgeries the 1st 06, 4-5 s-1. the recovery was aweful, 3 months later went back to work, then about a year late the job kept me moving all over the city, i was having so much pain, i kept going back to the surgeon and he said nothing was wrong w/ me, he did x-rays , i explained i am going to seeek pain management i found dr. michael rock, he did evry trial u can think of then sent for mri, one of the screws was stuck in pedicuue, my bones wre bleeding had a blood trans did nor even know, he said i was a hot mess and recomed i fingd another surgeon, i went for three of them all said the same i need major reconstruction surgery, it took the surgeon 3 hours to take a busted screw out from my back!!! i was in op about 8 hours, my new surgeon is great, i had my 2nd surgery in 09, i am totally fused, i had and L-2 L_3 L-4 L-5 S-1. now i have 10 screws rods and plates,now i had burning pain and they finally gave me a radiofrequencey s-1 joint injection the burning is miminal, i also have scar tissue, but i will not do another back surgery, he pain doc want to try a spinal stimultor, now i am faced w.neck issues that neeed to be addressed had mrei ct scans x-ray u name it, it appears, need a C-4 C-5 C-6 c-7, to be sure we are going to do a EMG in a few weeks, for tmy hands get so numb esp when it is cold!! and the headaches are aweful!!!! if i sit up to long my neck is a killer, waiting for emg and mentally ready for this surgery!!!i know i will never be a 100 percent , but the mind is stronger than the body i will keep my second surgeon he is great, my 1st surgeon was from rush hosp i thought i had the best not!!! i will stick w/ dr. michael malek!! i trust him and he really cares!!!! good luck vicky!! it is time for us to move lol lol
  • sorry teenage pressure there ignore that im new and my papers due tomorrow. so thnx for those who commented but i think im good now
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