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Failed Spinal Fusion; Extreme Pain; No results! Depressed...

AnonymousUserAAnonymousUser Posts: 51,465
edited 06/11/2012 - 8:23 AM in Scoliosis
Will someone please tell me if you've had the same experience? I had spinal fusion for a Scoliosis curve of 59 degrees from T2-L4 in 1998. I only had five good years of feeling "normal" or pain free, even though it didn't straighten out my spine to more than a 30 degree curve. Suddenly I woke up one day out of the blue in extreme pain and my neck was hunched forward. It has been four years and I have had chiropractic adjustments every week since then and even purchased a Tempupedic bed only to get minimal results. I am crippled by the pain and cannot live a normal life. My entire neck is always out of alignment, as is my lower back, and I have constant burning in my upper back near the rods. I just feel like I can't go on anymore in this much pain and the orthopedic doctor said my spine is better than before, he can't explain the pain but he believes me, and there's nothing he can do for me. If you ask me, these spine surgeons want to get paid and they don't care if the surgery fails and you're left with your life ruined. I'm so frustrated!!!! Anyone out there like me? I would love to know you!
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Comments

  • Hi and welcome to Spine Health. Well I don't have the same experience as you, however I didn't want your post to go unanswered.

    Have you only been to the one ortho surgeon? Have you ever had any other spine specialist take a look at you?

    I hate to break it to you but surgeons do care about more than the money. I'm sorry that you are so bitter at this point.

    "C"
  • I had the same problem.myneck goes foward i,m in pain all down my spine burning piching stabing mine was done in 1980 my back is curving to.didn,t hold.doctors won,t do any thing because my doctor is dead.
  • I hope I am not to late to help. I had a spinal fusion about thirteen years ago due to scoliosis. After the first year every year after the pain in my lower back got progressively worse. I just started going to physical therapy about three months ago and it is wonderful!! I am still having pain...I don't expect it to ever fully go away, but it is much more tolerable. They are working on strengthening my stomach with exercised that don't move my spine at the same time. Such as tightening my lower stomach muscles and holding it for five seconds at a time (without letting your larger upper stomach muscles tighten much) and holding those same muscles tight while you lay on your back and march with your legs (also try not to let your back arch upward, that means you are using your back muscles and not your stomach muscles)and many others but those would be the easies to do at home. THE BIGGEST HELP I think is the therapeutic massage...it hurts, but what happened in my back was because the muscles around the fusion don't really function properly my fascia (the part of the ligaments that cover the muscle mass) dried out and formed adhesions (additional scare tissue). It was explained to me like this. The fascia is like a rubber band and when it dries out it is no longer flexible to it is constantly pulling the ligaments and thus pulling on your spine. The only way to really fix this problem is to find some one specifically trained in this particular type of massage (My physical therapist is). But a regular masseuse probably isn't. They rub on and around where the nodules of scare tissue(adhesions) formed in your back which lubricates them and makes them elastic again. After having my rubbed for about the past two months twice a week I am just now starting to feel the difference so it takes time, but I definitely have seen enough result to feel confident that one day I will be at a manageable pain level. I hope this helps you...and good luck.
  • hi. i have scoliosis. i hope your pain goes away. i also suffer depression. good luck.
  • Hello Edy,

    I'm new this this forum too! I completely understand what you are going through. I have been through a very similar situation. I had a fusion over 2 years ago and I am now in worse condition than before. I've been in constant pain for nearly 6 years now and it's horrible physically and emotionally. I've known about my scoliosis since I was 13 and I'm now 33. But I never had any problems with it before I had an injury. I hurt my back picking up a heavy suitcase and bulged a few discs in my lower back. After a few years of very conservative treatments that failed including injections, PT, drugs and some others I can't remember at this moment... nothing worked for the pain. I saw numerous doctors (spine specialists) and eventually wound up having the fusion. My surgeon basically said that until we addressed the scoliosis that we wouldn't ever be able to control my pain. So I took a leap of faith and did the surgery.

    It was horrible! The worst experience of my life at 30 when I had it. I was off work for 5 months. Since the surgery I've never fully recovered and I'm now in worse pain than I was before the surgery. I regret it every day now. At the time when I decided to do it I thought I had nothing to loose because I was already miserable every day in pain. Little did I know that yes it could get worse, WAY WORSE! So now not only do I have the original pain, but I have pain in areas that I never had before including my neck and above and below the fusion. I feel like I have a knife in my back all the time. Oh and let's not forget the loss of flexibility! There are many things mechanically I just can't do. I pretty much don't have a life right now. Pain keeps me home and not able to do the things I love. I'm sick of it, sometimes it's hard to keep living. But I do somehow find the will to live.

    Just wanted to let you know there are others out there like you. So don't feel alone. More than anything I'm angry at all these surgeons that convince these hopeless people in pain that they can have a new life with this surgery. The one thing I've learned since then is the fusion doesn't always take away the pain. Yes you might be straight as a board but what good is life in constant pain even if you do look normal? Right now it's my mission in life to help others like me and to create awareness about these butchers out there that make money off of people looking for hope.

    I'm currently seeing a pain management doctor and a new orthopedic surgeon. Who both by the way said my previous surgeon should have never done the surgery because I am too young and that's too much of a life to ruin if it didn't work out. Hmmmm wish I would have known that a few years ago. We are trying all sorts of things to manage my pain, none have been successful yet, but I'm trying to have hope.

    Stay strong and keep looking for an answer. I know it's out there it's just going to take time.

    And for anyone out there who is thinking about a fusion. Please please research a ton and don't take the advice of the first doctor. This surgery can completely change your life, hopefully for the best but often times for the worst.

    Shelly
  • Please Edy are you taking an antidepressant or something like amitripyline for nerve pain? Have you tried some pool physio? Hope you're feeling better. Take care. 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
  • I had spinal fusion from t5 to t12 2 and 3/4 years ago. i had a 52 degree thoracic curve and about 35 lumbar. i am straight as a board now but i feel like id rather die than go on living like this. Surgeons are money hungry bastards and contrary to the post above, they dont give a damn about post op care, they wanna rod people up and sed them off to live in hell. My doctor, Peter Newton is one of the "best" surgeons in the world yet he cant even try to explain my pain. ive done everything (ct scan, bone scan, trigger point injections, fecet joint blocks guided by ct imagery, botox and soo many medications. Nothings helped and I dont think Ill ever feel good again. Spinal fusion ruined my life too, and im only 21 years old!
  • Just saw your post since it got bumped up. I assume you did fuse, correct? If you have pain at the top of your rods, then why can't you have the hardware out?

    I don't know much about fusion for scoliosis(my fusion just a two level lumbar), but you shouldn't have to just live with this. I'd get another opinion from a surgeon.
  • hi there my heart goes out to all you suffering, after years of doctors not really knowing or listening to me, i finally got a second opinion at jimmys in leeds..one x ray showed my spine was a complete s shape....6 weeks later i had surgery with a rod from the top of my spine to the middle,and 6 screws holding it all in place...after a long recovery i thought it was succesful. over the years i have suffered a few months here and there especialy whilst pregnant.. however it has been 17 yrs since my surgery (im now 33) and 3 weeks ago i suddenly srarted with pain behind my left rib cage, which spread over my shoulder and sometimes down my left arm..the pain raidiates up the back of my neck..if i look.up or down or left or right the pain shoots across the top of my back, i am finding hard to breath without pain and feel my lungs are restricted, when i wake up on a morn the pain is soo bad and i cant breath,and i also get a burning feeling down the side of my spine. in 3 weeks i have also suffered really bad migranes. doctors keep telling me i must have pulled a muscle, but i feel it is something to do with my hardware in my back. my curve looks as bad as it did before the surgery, and i feel something is not right...i have seen 3 doctors but come away feeling frustrated,the last doc laughed when i said i feel it has something to do with my spinal surgery, his reply was "it was years ago,so it will not be that causing yr problem and an x ray will not show anything anyway" so there i went home with more pain killers another sick note and feeling now depressed. why wont anyone listen to me and just give me a scan or x ray just to put my mind at ease. please if anyone is suffering these same symptoms let me know. :<
  • I have had 2 failed fusions and know how you feel. I have gone threw 3 spine surgeons and all their answers are to have more sugeries. lol don't make since why have more surgeries if it is just causing me more pain. I just had my 1st lumbar fusion that worked i am fused there but have sever pain there and doing PT little by little. I understand how you feel about trying to get thing straightened out after failed surgeies they have done surgeries. i honest believe that i am in more pain now than before my surgeries started, and that sucks for I am only 31 so what kind of quality of live has that left me.

    I am so sorry to hear your in so much pain, but have your Dr's done a CT Myelogram to help rule out some issues there????

    EDY I hope you are feeling better and that you are getting the support you need from Spine Health, also there is chat on here and a great group of people you might find it supportive nice to because we are up late in chat so the sleepless nights you can chat with other SH member.

    Best Wishes
    Paula
  • my name's Mary. i'm 22, diagnosed with advanced scoliosis at age 11 and underwent posterior spinal fusion with double harrington rods (T1 - L1) in 1998. i am basically going thru the same thing you are. i had moderate pain following the surgery but was able to tolerate it well, until i was involved in a SERIOUS MVA where i was hit by a dump truck and fracture my L2 and L3 in 2005. since then my pain's become constant and intolerable. my advice to you: GET A SECOND OPINION!!!! 2 years after my car wreck i went back to my ortho, he took x-rays and told me there was no reason for my pain and wrote me for flexeril and PT, both of which didn't do shit for my pain. i got a copy of my med records recently, and after reading them out of sheer boredom, i noticed that the hospital i went to for my car wreck in '05 noted that one of the hooks from the fusion had been pushed into my spinal canal and was decompressing the spinal cord. i have since seen my PCP and he has referred me to a neurosurgeon for further evaluation. your ortho probably just isn't seeing anything wrong because he only specializes in bones. i would suggest getting a CT or MRI scan and taking it to another dr for a 2nd opinion. there may be something wrong that you don't realize, and i'm kind of pissed that i may need a 2nd surgery and have been sufferring for 4 years for no reason. i've been checking with lawyers to see if i may have a case for a malpractice suit, seriously. but anyways i hope that all goes well for you, i know what you're going thru. be strong, talk to your dr, and don't give up. its a hard, hard thing to have to live with but there is somebody out there who can help you. god bless
  • Yes you are right about a Childs love is the best Medicine!! since coming home from the hospital 3 weeks ago my daughters have been the greatest i know they hated to see me go through this again, but they had AND still have my back!!

    good Luck to you
  • I am also 22 years old and had Harrington rods put in in 2004. My pain has never gone away. My life sucks because I am constantly in pain and there is nothing I can do about it. I see a pain management dr, go to physical therapy, a chiropractor and tried yoga. The more I do, the more pain I am in. I think there is something seriously wrong. There is a burning along my spine at all times and I cannot move my shoulder blade on the right side. I feel like I am trapped in my own body sometimes. I got into a serious car accident a year after my surgery and into another 3 weeks ago. That has just made it hurt worse but my xrays came back and said everything looked fine. My doctor who originally did my surgery was terrible about post op care and when I called a few years ago to complain they said they were no longer in charge of my case and didn't even offer to help me find someone else to help me. No doctors seem to care of understand the level of pain we suffer on a daily basis. I'm glad to have found this forum and know that other people have had the same horrible experiences I have.
  • Cristin119, our situations are so much alike. My pain management dr thought bursidis might be the problem but another dr ruled it out. I still think it could be that so im gonna keep seeing more drs. Three years of chronic back pain is debilitating. I just graduated from LMU, it was so hard to get through it in so much pain. now i wished i would have taken a semester off to try and get some relief but its such a long procesws with scheduling appts and all. I just dont know who to go to now. It seems like ive done everything. I need to get off my meds and get a job and start my life but I just cant get over the pain. Its rediculous to me that no dr can explain or diagnose my problem. anyone with seccess please let me know because it seems i have just ran out of options and i can either be onb pain meds my entire life and still be miserable or just be miserable without them. i feel like after three years i need to stop taking medicine especially narcotic pain killers and benzodiazapines, but they are the only things that make me feel better.
  • I'm so sorry to read that so many people are suffering so much. If I had read this 5 months ago, I wouldn't have gone through my surgery T4-pelvis, fusion with instrumentation, and wouldn't be sitting here now, pain free.

    I can only suggest that you don't stop looking for the right doctor. Someone with loads of experience in revision surgeries. I know the Harrington Rod caused a lot of problems but the new rods, the new surgical techniques and the new drugs are so much better today. It's too much to be expected to live with the kind of pain some of you have. Just keep on looking, until you are happy with your surgeon's experience and with what he says he can do to help you.
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