Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

Avoid Scoliosis Surgery

I feel Scoliosis surgery should only be considered as an absolute last resort; i.e., if you are truly hunched over and disabled from Scoliosis. There are now alternative options for moderate Scoliosis patients, including chiropractic traction/ weights, and soft braces. If you absolutely have to do it, get yourself a good anesthesiologist to attend you with adequate pain medications after the surgery and while in hospital. If you have good pain management, you will be OK during your hospital stay.

I understand that for some people, surgery has to be performed and is the means toward a more normal life. This posting is intended for those with Scoliosis curves that go could either way, those that hang in the balance, so to speak.

Now here is what I have to say. If you will find it upsetting to read a painfully honest account of what it is like to age with the surgery, please stop reading.

After suffering silently in pain and immobility from my scoliosis surgery for over 25 years, I am finally going to stand up and say what I really think about the surgery so that I can help others avoid what was my disabling and life-altering choice. My post might be unpopular, as speaking up against medical opinion always is, but it is only right that I speak honestly so that I can save other young people from making the choice I did. I hope others will respect my right to share what it is like for me to live and grow old with this surgery. I only wish someone had been honest with me about it when I was younger.

I was a normal, healthy 20 year old college student. I had been braced with a Milwaukee brace as a teenager but it didn't work, and so, before I aged-out of my parents medical insurance, I thought I would just "take care" of my scoliosis problem and have the surgery. My curve was about 60/40 degrees, getting a few degrees worse every year. Unfortunately, the people I had met that had had the surgery never told me what it would REALLY be like to live with a fused spine. They were afraid to speak honestly to me. And of course the surgeon was only too happy to perform the Harrington rod operation and get his huge fee. He told me what I understand spinal surgeons are still (sadly) saying today: "You'll be able to do everything you did before the surgery except for a somersault or a contact sport." What utter and dishonest nonsense!

The pain after the surgery was nothing close to the pain I had from the scoliosis. The surgeon also took bone from my hip instead of using a cadaver and that added to it. These days, pain medications are better, so now this doesn't have to be a problem.

But the worst sensation was a few days later when I was transferred back to my room and realized I couldn't bend my spine. At all. I was horrified. No one had ever alluded to this. It felt like I was wearing my brace, but INSIDE my body. I could feel the metal, and it was a horrible feeling.

I never got used to it. For 25 years I have longed to arch my back, longed to stretch, long to hunch my back when I sit. The human spine is meant to bend; to fuse almost the entire thing is to permanently disable and alter someone. And muscles don't forget; mine want to stretch like they were meant to. Also, as you age your bones become stiffer; years of having a fused spine and having to compensate for the fusion take their toll on your hips.

I have been on opiate pain medication since my surgery; on that day, I was turned into a chronic pain patient. In an effort to relieve my pain and stiffness, I did have the hardware removed years ago, but although I'm glad I did it, it didn't give me any more flexibility.

I am the voice of (some) scoliosis patients who are aging with the surgery. I dare to speak out against this surgery and the surgeons who continue to perform this procedure, even in cases like mine that are not that bad. I hope to save others with moderate scoliosis from a choice that should be a last resort, hope to educate parents from not choosing this surgery for their children unless they absolutely have to.


  • JenGJJenG Posts: 232
    edited 08/10/2013 - 12:41 AM
    Please, surgery 25 years ago was a lot different to surgery today. In fact there's no resemblance. I'm sorry you had a bad outcome but scaring people who're needing surgery today is not fair.

    You say: "I dare to speak out against this surgery and the surgeons who continue to perform this procedure" To anybody reading this, please be aware, doctors are not performing the procedure this poster had, today.

    I am editing my post because I should have dealt with the original poster's assertion that she didn't know that spinal fusion meant she couldn't bend her back. It's hard to believe anybody could go into this surgery without knowing exactly what it means. My spine is fused and I bend from my hips and bend with my knees. There's nothing I can't do. Some things are more difficult, but there's nothing I can't do. It concerns me deeply that the original poster is unnecessarily scaring scoliosis patients who may benefit from today's modern techniques. (Such as giving advice to see a chiropractor.)

    My advice is to find the best scoliosis specialist surgeon and be evaluated for a revision. Lots of people who had surgery decades ago, have had revisions and gone on to have normal lives - so worth it! I hope you do too.
  • I would like both sides of the story, both good and bad. I am glad you dare to speak out against doctors and value your opinion. It's something I am really considering but have had PM's from people who have had the surgery not long ago and they have not had good outcomes. I am different, I had a trauma injury and drs are still reluctant to operate on the thoracic spine. The saying is one bed for the dr and one bed for the patient as it is such complex surgery. Any advice is welcome to me.
  • BobbieBBobbie Posts: 4
    edited 10/13/2015 - 6:44 AM
    I started with a Milwaukee brace as well, my parents opted against surgery. My curve was in the low 40's top n bottom. had on and off pain thru my 30's followed by a L5S1 fusion, laminectomy, discectomy. Back then in the 80's I spent six months in bed during that process, n needed narcodics since. It becomes just life pain and restriction, we adapt. I became
    Disabled formally in 2007. Life goes on, u just do what u can weighed against pain, does it just hurt or will it harm?Well out of the blue a year or so ago after not having my curve measured for 15 yrs( no reason, surgeons said nothing could be done being in the 40's) my curve was 72 n 68. I had no idea this could happen! Long story short I'm 4 mos out of a t4 to sacrum fusion, I'm 57, bad joke :) should I have had it sooner, probably , just a guess u would have ended up needing it anyway,60 is a lot . Mine was up to 78 n 72 in a few months before surgery. Finding out when ur older and have osteoporosis, degenerative disc disease......makes it harder, plus the more yrs u take narcodics the harder to control pain after this major surgery . So 28 bolts and rods later IMHO I wish I would have had it younger. I do understand ur pain n frustration this is our lot on life, but I think it gives us great empathy and personal strength, who knows what would happen if something was done differently, coulda been better or worse.....I just try to remind myself I'm still walking :) good luck just keep "trucking"

    Please do not use abbreviated text talk!!
  • Thank you so much for your story. I too would want the honesty. I like hearing both sides of the story as well. It's a good way to gather information and make the decision for one's self.
  • JenGJJenG Posts: 232
    edited 05/28/2013 - 2:58 PM
    Yes, it's good to get both sides of the story. Scoliosis fusion surgery doesn't always have a perfect outcome, like mine. However, you need to compare apples with apples, not apples with oranges. What the opening poster experienced 25 years ago, as I said in my earlier post, is nothing like what's done today. Get the facts, don't compare 25 year old techniques with today's techniques. I think some of the posters in this forum are not even talking about scoliosis, others are. This is a scoliosis forum. You can't compare procedures for other medical problems with spinal fusion surgery for scoliosis. I don't come here very often because so much nonsense is written here about modern scoliosis fusion surgery by people who haven't experienced it or even know anything about today's scoli surgery. It's disturbing that this nonsense is being taken seriously by some. Forget chiropractors, they cannot stop the spine curving and at best, can only temporarily help pain. If you have a progressing curve, or are in pain from Scoliosis, see an experienced scoliosis surgeon. He won't insist you have surgery, he will simply tell you your options.
  • I had scoliosis surgery (cotrel dubousset) in 1989 and had major revision in 2012 (two surgeries). Spinal surgery is very different today. Still not for the faint of heart but I do have to agree, the technology is much different now.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • NormaNNorma Posts: 2
    edited 08/04/2013 - 8:01 PM
    I had a pronounced scoliosis curve which was progressing so I went to the ** EDITED TO REMOVE CLINIC AND PHYSICIANS NAME who was then and remains renowned for his surgical techniques and successful results. Of course, at that time Harrington rods were used; I have two of them and 17 vertebrae fused with bone from my pelvis. I wore a "turtle" plaster cast for nearly 11 months. My recovery went relatively well. My surgeries, 2 weeks apart with traction between, were in June. By September I was able to drive my car and return to teaching.
    There are many things I cannot do with a completely stiff spine, but I am able to do my life work, teaching, and I wasn't before. I feel very fortunate that I had Dr. **EDITED AGAIN TO REMOVE PHYSICIANS NAME **do my surgeries. He is in San Francisco now. For anyone pondering the surgery, he's worth looking up.

    Standards agreement and posting rules
    Please note that Spine-Health reserves the right to edit any messages posted or submitted or e-mailed to the Company and use them for content on the website or in other company materials. No e-mail solicitation or advertising of other companies, products, services, health care facilities, web sites, or naming of health care professionals is permitted in the Spine-Health.com forums.
    Post edited by the Spine Health Moderation Team
    Please review the forum rules prior to posting at these links for more information.
  • To Jen, it's good to get both, but it's better to get many. I had scoliosis surgery six years ago. Supposedly we have the best hardware, I had a great Neurosurgeon (or so I was told), and yet six years later, I am on narcotics, am looked at like a drug addict when I go to the pharmacy, and exist daily with exceedingly more pain after my surgery than before it. There are many more things you might not be able to do. I was a fantastic swimmer, jumped in the pool (where it was suggested I do my primary exercise, and went straight to the bottom. I can now swim on my back, but not on my front, after six years. I feel like I have a hunk of metal in my back, and have severe nerve problems that didn't exist prior to this surgery. Im not saying everyone has this outcome, however I am saying that just because your surgery is newer, with newer technology, does not mean you will necessarily have a favorable outcome. I would pay every dime I had to have this removed....
  • Hello my name is Carmen I am 49 years old and was advised from my doctor that I must have the spinal fusion from neck to bottom!! I am so scared and afraid of not being able to do anything anymore, I will be seeing a nuerosurgeon on the 26 of this month for a second opinion. The doctor that wants to do the surgery is a scoliosis surgeon and I have been trying to do research on him and I do not find anuthing on him just his name and where he works. My family told me not to go online and read anything but I have too I need to know what to do!! MY curve is I think 43 degrees.
  • SavageSavage United StatesPosts: 5,427
    edited 10/17/2015 - 11:33 PM
    Welcome to Spine-Health
    Please click on link for helpful information!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • I agree with Floridagirl....and Jen. You really have to do your homework on such an invasive surgery as scoliosis fusion, and this is a great forum to get information from people who have been there specifically. AND remember, people that have success and feel good do not come to a pain forum! I have never posted on here, but came to check out people that had revisions like myself, but want to weigh in on this post. I feel like people going in today for surgery will definitely have different technology, mainly the type of rod and attachments, which make a big difference. And the procedure itself, point of insertion, length of cutting or not cutting. Even the age you do surgeries make a difference and your lifestyle. So you can't say surgery is either good or bad! There are many things that are going to be the same regardless of all the above.....you are getting fused!! That will OF COURSE change your mobility, range of motion, stiffness...but it straightens the curve drastically that could lead to other problems! My feel is your damned if you do, and damned if you don't. You get a better alignment in your back that physically looks better, and will help prevent in herniation and other issues of the disks in the rodded part...but will dramatically put more stress on the vetebrae that aren't fused. (good and bad again.)
    You could have pain before, and you could or could not have pain after. ALL depends! My first surgery (like the majority of you all in the 80's) was the harrington rods, and I literally did do anything I wanted after surgery, and had no issues or feeling of the rods. I rode horses, jumped on trampolines, and all other teen activities. In my 20's I worked out (I'm a personal fitness trainer for 25 years) did normal things, very active, even did Trialthlons! I had one child...and finally all the overdoing I was doing was overdoing on my back muscles and unfused vetebraes. (you have to be smart...you only have one spine...be the best you can be to it!!)
    I chose to have a revision at 34 years of age! Was it successful??? What a question! Those that is WAS successful, are not on a pain forum! So important to remember that! Will my doctor say it was successful...YES!! (they do their surgery, and move on, or send you to a pain specialist!, which is maddening!) It's sad you have to come here, rather than talking to doctors! Looking and comparing ex-rays before and after, will tell you it looks way better! SO, thats the plus, and who can know what my body would feel like if I hadn't done it, but I can tell you, my pain is now way worse! Plus, now I have nerve pain down my left leg, that drives me crazy. I have been on pain medicine for 11 years now, and hurt constantly. Before I never felt hardware, now I can feel the hardware and the rigidness of my back!
    So...I love reading these posts and learning about others outcomes and options , if nothing else just to know there are people right there in my specific situation!! You know what a small group we are?? And everyone has different results, even though they can be grouped in the same category.
  • californiadadccaliforniadad Posts: 1
    edited 10/25/2015 - 9:32 PM
    I am devastated. I have a tiny 11 years old daughter with a 60 deg. curve. She is scheduled for a surgery end of this Nov.
    Everything I read on the web, affects me. Up & down. I sometimes get so much hope & positive energy. But, at times, I go down. Real bad.
    I cannot picture my daughter be in such a pain someday to be looked at as a drug addict.
    My God. Am I doing the right thing to have her go through the surgery? I cannot take this anymore.

    Please click on this link for spine-health information
    Welcome to Spine-Health

    I am sorry to hear your daughter is facing surgery, but only you can make the decision about your daughter having the surgery, you should discuss your fears with the surgeon.
    Liz. Spine-health Moderator

  • A spinal fusion is exactly that, a spinal fusion. It doesn't matter how long ago it happened. They have better options now, like the scoliosis boot camp. They have identified that folks with scoliosis have a hormonal/nutritional imbalance identified in the brain directly related to the spine and neural pathways relaying to spinal movement and growth. They can give hormones and other mineral supplements to correct the imbalance. They also have special excercises that have been proven to correct the curve dramatically and quickly. I wish I'd had the opportunity to do that instead of surgery. At least try it before going to surgery. Fusion makes your muscles immobile. The type of fusion really doesn't matter. Your muscles atrophy, the parts unfused above and below are stressed much more. I ended having a 2nd fusion at the base of my spine due to erupted disks. They couldn't handle the movements that were meant for an entire spine. Avoid surgery unless your life is in danger for not having it. It's a life of pain for many, and you are stuck.
  • I'm glad I had a failed cervical fusion before being faced with the decision to undergo surgery for my scoliosis. The revision has not been terribly successful, either. If a simple neck surgery can go so wrong with all the new surgeries and modern equipment, I cannot imagine subjecting myself to the radical surgery that was proposed to me to fix my scoliosis.

    I almost did it, glad I didn't. Living with pain everyday of my life either way. I'd rather not take my chances that things could be worse.

    Thank you for offering both sides to this issue.
    Scoliosis and other problems at every level.

    2013: C-5 to C-6 ADR
    2014: C-5 to C-6 fusion/revision of failed ADR
    2014: Total hip replacement, right

    Cancelled multi-level fusion - fear being more crippled and in more pain.
  • I had a full fusion T4-S2 and C4-C7 close to 3 years ago now. I have 2 spinal cords and had scoliosis pretty bad. It went from a 41 to 58 in a month. The bottom curve was 48. Now my curve, well no curve, is 9 top and 11 bottom. My surgeon did a fantastic job and kept me from the wheel chair I was headed for! I take it surgery is not for everyone. However there are those of us who will live a better quality of life with it done. Yes there will be pain but at least I know I can still feel.
    I had some trauma to my spine from being rear ended and t boned. I went to PT for years. Even when I was pregnant the orthopedic surgeon was betting he would be doing surgery on my disks after I delivered. Boy was he wrong. I was suppose to have surgery when I was 13. My father did not allow this and I was then instructed to do daily back exercises. Years and years of disk problems and hungry doctors wanted me on the table for the disks NOT the scoliosis. I refused any surgery options given and went to PT. Pain meds were off the table because they make me sick. So back to 3 years ago. I slipped in my driveway on ice falling flat on my back which left me unable to move for over 10 minutes. My spouse was over seas serving our country. No one could see me either lying there wbile the freezing rain storm fell down as well. I was cold wet numb and scared. I finally was able to crawl and get myself into the house. Long story short, found a scoliosis doctor who took adults, I was 47. He explained it would be a very difficult surgery and recovery given my age. My spine was not only curved but twiste and crushing my right lung.
    He was not joking! The post op pain made me want to die. I begged to be put in a coma. No go. The 9hr surgery should of been closer to double but the equipment used saved time and increased perfection. I had lamenectomies osteotomies and so much other stuff done. Then I was told I was disabled and that blew my mind. I lost my 8 year job which was precious to me. Its now 3 years and I am doing PT again. I do it every year for some months time for help with flexibilty and pain managment. I have 40 srews, 5 cages and two rods between the neck and back. Oh yes I feel the metal!! I have lost feeling in most my exterior back and legs to feet. The legs and feet oh and hips are not as widespread as the back. I hate to be touched now on those areas as it is odd. My PT does scrapping on my back to break up scar tissue. It seems to help for a little while. My pain signals are all messed up I am told so its numb in places and then super duper, did I just say duper?, sensitive.
    All in all if I had to do it again, hind site now, I would just make sure pain management was better. They had pain pumps of dilaudid and othe stuff but it did nothing. If it did I cant imagine the pain being worse. I shook so bad from the pain and lost quite a bit of blood so had several transfusions too. Then I passed out and was transferred to the cardiac unit. Um I had a spine reconstruction...they had no clue to what I needed it seemed. I had a catheter for my urine but had no bowel control. Had diharreha and my poor husband bless his heart cleaned me up becuase there were no nurses available to come in. I had drains coming out of me that were leaking everywhere. They said they were not used to having someone like me on their floor! Then my bloodwork was just a mess. I am a thyroid cancer patient. Soo they had the endo come down to tell me he thought my cancer was back. I told him I already knew that and it would have to wait.
    I spent 5 weeks in the hospital and rehab before going home. Used a walker for over a year then to a cane. I also quit pain meds after a year or so after but still use muscle relaxers. I could just take the pain meds and be a zombie but....no. The stubbornes inside me refuses to take them. My liver has enough problems with all the bening tumors in there. I Still have right side weakness and wobble, fall over time to time. I still pass out time to time, fell down the stairs after my right leg gave out.
    There is still pain but again it is what it is. Would I tell anyone based on my terrible experience not to go through the surgery, no. I feel bad for all who still suffer after everything you have gone through. Now I am just still trying to reinvent myself. Find out what my purpose is and move on. I am sorta stuck. I also miss bending at the waist and twisting. I find I get down on the floor and without strong quads have a hard time getting up. My lab comes to the rescue though! I drop stuff due to my spine but my lab comes and picks whatever it is mostly and gives it to me. I also suffer from PTSD and it seems that the surgery somehow opened that can of worms with flashbacks and nightmares. Idk I would still do it again though for the simple sake of being able to walk and have use of my arms.
    If you read this all the way through, thank you. I am here for support and to try and support you back!
    Live, love, laugh, it could always be worse.
  • STANDS UP AND CLAPS HANDS! Couldn't have said it better myself! World for word! 
    12 vertabrae fusion 2004 w/ rods for scoliosis. July 30, 2015 Discectomy & Laminectomy w/ mesh built disc & spacer, fusion one level down, new rods & new screws. Allergic to opioids. No medication except Valium & Tylenol.
  • In my 6th month since level 8 fusion for scoliosis.  Came home from hospital, dumped the pain pills and went on Tylenol.  Kept active as possible.  Went to a meeting second week after surgery.  No big deal.  Now I'm fused and back to a normal life.  Don't be scared, the boogie man won't get you. 
  • Titainium Spine Queen.
    What an Awe inspiring Story.
    What a journey you have had until here
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • llalunalllaluna PhilippinesPosts: 1

    Hi. I know am posting this late when this post discussion occurred years ago. I have a 16yr old son with autism (low functioning,non-verbal) & he has schizoid scoliosis -lower curve at 60 degrees & upper curve at 27 degrees. Because he is autistic & can't talk, I really have strong reservations in going through with spinal fusion surgery. I mean how do I even keep him immobile for 2-3months(at the very least!) after surgery. Let alone explain all this to him when he can't understand what is happening. I am really at a loss. What would you advise? Please, please , please help.

  • ldalegendlldalegend UNITED STATESPosts: 1
    I was diagnosed two years ago with scoliosis. I'm 54. I never had aNY indication that I was diseased. I injured my back at age 31, but doctors refused to treat my pain....thought I was drug seeking .Finally, the scoliosis appeared and I am being treated with buprrenorphine tabs .I was against surgery at first, but the disease has progresseds o rapidly that I am looking forward to surgery .I was stunned today when pain mgmt doctor advised against surgery. Now, I am l very confused

  • selenavivesselenavive Staten Island ny Posts: 1
    I had scoliosis surgery two thousand I was 19 going on 20 when I went through my back operation when I woke up in  recovery I was in so much pain I don't want to scare you but let me tell you the thruth I lost between 4 and 6 units of blood I had blood transfusions I had blood given to me my doctor took pieces of bone from my rib cage and a bone  graphic from my right hip they put these purple things on my ankles to  prevent Me from getting blood clots while I was laying down during my operation you also have to walk a few steps after your operation so you don't get blood clots I am went through two back operations and there are times my back still hurts  
This discussion has been closed.
Sign In or Register to comment.