Patients Experience Pain Years After Scoliosis Surgery
Surgeries can severely impede a patient’s long-term quality of life. For the most part, these patients aren’t receiving all the necessary information they need when considering the true impact of long-term scoliosis treatment. Especially when it comes to all the available options, standard or alternative. One in three spinal fusion patients reports back pain after scoliosis surgery — usually within 7 years of the treatment. Nerve damage, implant failure, joint degeneration and other surgical implications can all cause chronic pain, which severely impact the patient’s long-term quality of life.
Patients Experience Shoulder Pain after Scoliosis Surgery
Patients tend to have shoulder pain after scoliosis surgery and require physical therapy and medications. Some patients also experience persistent pain at the bone graft site (from where the bone was taken) which can be long lasting. Additional complications that may be associated with scoliosis surgery include loss of proper spinal balance, failure of the bones to properly heal and fuse (pseudoarthrosis), instrumentation failure and vertebral degeneration in the levels adjacent to the fused section.
Patients Experience Lower Back Pain after Scoliosis Surgery
Unfortunately, scoliosis treatment usually revolves around a narrow-minded focus—preventing curve progression—without full consideration for the patient’s long-term quality of life. While traditional treatments, such as bracing and surgery, can achieve some initial curve reduction, over the course of a lifetime, they can also cause significant harm. Especially if the typical Boston Braces or other 3 point braces are used. Surgery, for example, might seem the best and ‘fastest cure’ course of action when your most pressing concern is to avoid curve progression, or to want to ‘get it over and done with’ but what about 25 years from now? Patients can and oftentimes do experience disability or back pain years after scoliosis surgery. Statistics show that a high percentage of scoliosis surgical patients become disabled as adults.
One Surgery Might Not Be Enough for Scoliosis
Studies show that 14% to 19% of scoliosis surgery patients eventually need more surgeries, called a revision surgery or removal of instrumentation surgery. Over a 20-year period, ongoing back pain has caused between 3% and 10% of patients to require revision surgery. The main causes for re-operation are painful implants, infection, or failure of spinal fusion. It is extremely important to consult a doctor for a complete list of indications, adverse effects, warnings, precautions, clinical results, and other important medical information pertaining to scoliosis surgery.
Unless surgery is the only option due to extenuating circumstances, patients should opt for alternative, non-invasive scoliosis treatment methods. This treatment will likely:
- Stop the curve from progressing and even reverse it
- Reduce rib prominence and diminish spinal deformity
- Allow the patient to live a happy and healthy life without the fear of invasive surgery
WARNING: Scoliosis surgery may kill or paralyze you
Sadly, there is a real possibility that you could die or end up in a wheelchair the rest of your life from your scoliosis surgery. It is a COSMETIC procedure.
If you are Considering Scoliosis Surgery, read these facts:
- There is NO MEDICAL REASONS for the Surgery. It is a PURELY COSMETIC PROCEDURE
- There ARE side effects
- People do DIE. In fact for kids, 2/1000 surgeries are fatal.
- People do get PARALYZED. 4/100 patients suffer from paralysis.
- 19% required re-operation within 2 to 8 years after surgery due to PAIN.
- To date, there is no conclusive medical evidence that correction through surgery improves function, self-image or health.
Patients report lower back and shoulder pain five years after scoliosis surgery. In teens, scoliosis surgery is a COSMETIC procedure; most of the time, there is no medical justification for doing the surgery.
Dr. Hersh is happy to assist you with any questions you may have. He is available to discuss your case by telephone or email.
Surgery or Alternative Treatment: Dr. Hersh explains your choices.
Outcomes of Surgical Treatment
Here are a few sample letters from actual persons who underwent surgical intervention for scoliosis correction: the exact wording has been altered to protect the privacy of the individual
I have broken rods in my lumbar spine after full spinal surgery. I hve back and neck pain and I have separation of abdominal muscles by 9 cm so my intestines protrude through my stomach wall cavity. I have hyperlordosis and kyphosis and severe scoliosis. My lumbar curve is collapsing and shrinking due to broken lumbar rods. I am waiting spinal surgery. Can you help me with my spine or stomach?
Nicola R
I am 52 years old I underwent scoliosis surgery at age 46 here in Buenos Aires. This scoliosis I have had since my adolescence. In the first operation I was left with an imbalance and they operated again to straighten me out. Now almost 5 years have passed since this second operation and one of the bars in the lumbar area is broken. These are titanium implants thanks.
Longterm Results of Scoliosis Spinal Fusion Surgery
I’ve been trying to find research on the long term effects of adolescence spinal fusion. I had a 56 degree “C” curve corrected, without hardware, when I was 14. I am now 63, and for the past ten years have been suffering from severe neck and overall back pain. As a result , I have had a multilevel anterior cervical fusion, and two lumber fusions. I have a multitude of issues with my back now; osteoarthritis, DDD, stenosis, spondylitis, spondylolisthesis, to name a few. I’m getting ready to have a pain pump surgically implanted as years of standard pain management has been unable to effectively manage my pain. I had to retire from my job of over 31 years and ended up on disability due to my back issues. For 40 years I basically had no problems after my fusion. I lived a normal life, have two children, played tennis, waterskied and enjoyed all normal activities. I’m just interested to see if anyone else has developed these issues after a fusion. I was told that because I had thirteen levels fused in my thoracic spine, my motion was limited and the stress was all placed on my neck and lumbar areas above and below the fusion. It was a process that was probably on going for years before I saw someone. My MRI on my neck showed everything on three levels had herniated into the spinal cord. Anyway, if you have any information I would love to see it. I haven’t found much.
Thank you.
Karen W.
Are there cases where removing the Harrington rod years or decades after initial surgery is beneficial to the patient?
I have only one free lumbar vertebra and most of my cervical vertebrae have experienced monumental deterioration and arthritic changes due to surgery performed in the 1970s. I have been told that total fusion will be the ultimate outcome.
If the Harrington rod could be removed, thus introducing more mobility and reducing wear and tear on L-3, L-4 and cervical spine, is there a possibility that more normal quality of life could be maintained for longer without total fusion?
I would be very grateful to see your opinion on this subject. My prognosis is seriously grim.
I was one of the unfortunate ones that had a Harrington Rod Procedure done after years of casts and braces. My curve has progressed over the years and I am now experiencing severe pain in the area of my pelvis where bone was harvested. The pain is so bad that I can barely walk. I am so glad that other procedures are now in place for Scoliosis treatment.
Robin H
Here is a little background regarding my current adolescent idiopathic scoliosis. I was recently in a car crash which has caused some neck and lower back issues for me. I am currently undergoing physical therapy and some exercises to help strengthen the muscles. It appears from these findings that I have degenerative spinal issues. I am only 39 years old and I would like to slow the progress of the disease and treat the lumbar and thoracic spine scoliosis and ward off any surgeries (since I have already had 3). I am hoping that there is a way that I can get some improvement on the scoliosis that seems to be progressing in the thoracic, lumbar spine and cervical spine. I have been advised that surgery would be the only option for me or live with this condition.
I had the initial Harrington procedure and fifteen months later had to have a Harrington re-instrumentation (the rods were too long so they installed shorter rod on the left side). The third surgery was a replacement of the rods and a fusion repair. I know that there is no more correction for the places where the rods are but I have curvature below the rods that I am hoping to have treated and perhaps corrected.
Scoliosis Spinal Surgery can lead to death:
Hi! I just visited your webpage. My name is Marcy. I am from Argentina. I live in a town called P (in the Cordova province). I want to tell you that my SISTER passed away on August last year, her scoliosis degree was 90°, we discovered it when she was 5, since then she used a corset for a while, my mother went from one doctor to another, some told her to use the corset, some others told her not to!!! Until that blessed operation came and ended in DISGRACE!!!! She was 14 years old, a lifetime ahead!!! Her 15 years!!! This is so SAD!!! SHE HAD HER SURGERY ON AUGUST 7. SUPPOSEDLY THE SURGERY had gone well. She left the operating room around 13:30… A few hours later, things started to get complicated, she was not urinating, but one of the doctors told my mother to stay calm, because there were many other methods to make her urinate!!! But that didn’t happen!! She then developed an internal bleeding!!! They induced her into a coma!!! And they no longer knew what to do!!! After that, the same doctors said that they didn’t knew what happened and until today, we have no ANSWER … PLEASE, I NEED YOU TO HELP ME UNDERSTAND A LITTLE WHAT HAPPENED… what may have caused this?? THANKS.
Here is a letter from a middle aged male with scoliosis:
I had scoliosis surgery 34 years ago and had a Harrington Rod inserted. During the surgery they took a bone graft from my left hip which they told me would be used to insert the rod. I healed quite well from the surgery.
In recent years I have been plagued by a variety of health problems— severe chronic fatigue and urinary tract irritability (potentially interstitial cystitis), along with chronic pain in my lower back and, more recently, much pain in my left hip where the bone graft was done. We have traced the chronic fatigue to high heavy metal levels (lead, mercury and copper). The heavy metal levels were determined via a 24 hour urine provocation test which measured the levels in my tissues.
Here is a question from a woman who had the scoliosis surgery:
Dear doctor,
I have had 5 fusions-hooks and screws I believe. I am fused from C1 to L4. Now the curve is progressing and left ribs are almost meeting left hip.
If you have any advice, I would be grateful
Thank you,
Claire
Scoliosis Surgery, A Last Resort
Surgery should only be done as a last resort when ALL other options have failed. I recently had a scheduled appointment with a middle aged woman to evaluate and treat her scoliosis. Before her appointment date, she inquired as to whether her insurance would cover her treatment. Upon learning that it might only reimburse her some percent of her care, she cancelled her visit. Interestingly enough, it is not uncommon for insurance companies to pay all or a large part of a very expensive surgical procedure such as the ones mentioned in the above letters. Of course the end result is not always the best result. In fact to assume that insurance reimbursement of a particular procedure or medical service is tantamount to it being the best treatment can be a very costly assumption in terms of your health. Insurance companies are not medical or diagnostic entities. In fact their ultimate goal is to their shareholders not to their policy holders. Just read a daily paper to find stories of insurance companies’ unwillingness to cooperate in the payment of a medical claim, and especially for a non-traditional one at that.
A Letter from a Scoliosis Surgery Patient
Dr Hersh
My name is Bonnie, I’m almost nineteen years old and was operated on ever mentioned to me. Nor was the fact that after 22 years my scoliosis could be back to square one.
What worries me today is that my lower back, an un-fused area, is becoming more and more painful, and that since 2003 my posture has regressed and my ribs are becoming more and more deformed. The rib deformity is what worries me the most; I’m scared it will start to affect my breathing if something isn’t done. What are the pros and cons of rib resection after back surgery? What do you recommend I do?
I would have liked to be able to ask these questions in person but I live in Europe, so this is impossible.
Thank you,
Miss Brown (Name changed to protect identity)
More Letters from Prospective Patients
My daughter Stacy S had a Harrington rod put in her back at the age of 14 yrs old. She is going to be 22 yrs old at the end of this month. She has had numerous problems since having the rod in. She has been in and out of the hospital for the last 3 yrs. Nobody could tell her what was wrong. The rod had came out through her back and left her with numerous infections and a hole at the top of her back, she has since then tried to get in with the Dr A. that had performed her surgery. She gave birth to a baby boy on Aug 16, 2011. She had recently went back to see a Dr to see what they could do and this Dr had told her to go back to the Dr that had put the rod in. She is currently on government assistance for medical and went to see Dr A. They want to take the rod out and she has a baby now. The infection goes 2 ½ inches down her spine to the hardware. I’m concerned for her, since she lives in Ohio and I her mother lives in Florida and her Dad has leukemia and lives in the home with her and the baby. They gave her strong antibiotics and pain pills until they can remove the rod. He won’t be putting a new rod back in until the infection is gone.
Sandra
Hi
I was wondering if you had any information regarding rod removal. I had my scoliosis surgery in 2009 and am now 18 and in excruciating pain. I never once had pain before my surgery. This is causing me severe limitations in my life as I cannot sit for more than half an hour before crippling over in pain.
Thank You
Good Afternoon,
My name is Sara, I live in Flower, Tx. I am 45 years old. I went to the Scottish Rite Hospital in Dallas Texas. I wore the Milwaukee brace from the age 10-12 yrs. Then had surgery. They put in one Harrington rod on the right side of my spine. I wore a body cast for 6 months then another brace for 6 months. I went without anything during my year of 14. Then went back for my FINAL checkup, only to find that gravity had taken my spine. I was admitted that day and had surgery the next day to remove one of my ribs on my right side.
After laying flat for 3 weeks they did my second scoliosis surgery, they removed the initial rod and replaced it with one on each side of my spine.
Again I wore a cast for 6 months and another brace for 6 months. By the time this was complete I was told all was as good as it would ever be and I was now too old to come back…the age limit is 16 years old.
I am writing to you today because at 45 yrs. I suffer in pain daily.
My question: is there anything that can be done or do I go on as I have been and live in pain for the rest of my life.
I have to tell you…this is making me old way before my time.
Any information you can provide would be greatly appreciated.
Thank you,
Sincerely,
Sara Q
Hello,
My name is Alyssa C, I’m 18 years old. I had the surgery done for scoliosis when i was about 15 years old, due to the fact the brace did not help the curves in my back.
6 months after having my surgery done, I started having problems. I noticed that I was not able to bend at my waist on the left side, like I was able to on the right. I also started to notice my left leg was giving out on me, and that I was not able to straighten my left leg when I was sitting down. I went back to the doctor who did my surgery. He had me try to do squat’s, I was not able to, because my left leg gave out on me when I went to bend down. I went to physical therapy, during the time I was there the muscle strength increased in my right leg and arm, and my left arm, but there was no reaction in my left leg, if anything it got worse. We went back to my doctor and he told me there was nothing he can do for me.
For the past 3, almost 4 years in September, I have been living with these problems, but they have progressed. The left side of my back is always in pain, and if I bend a certain way or if I move a certain way that pulls the muscles on the left side of my lower back by my waist, it feels like something is pulling and it makes the lower left side of my back swell up, which causes pain when I walk, run, lay down, or stand up. I can onl get the pain to stop when I am sitting down leaning my left side against an arm of a couch or chair. Also, my left leg has gotten worse and my right leg is turning out the same as my left. When I sit down, I am not able to straighten either one of my legs. My right leg straightens more than my left, but I am not able to fully straighten it. If I do forcefully straighten my legs, I feel a huge pain from my lower, and sometimes upper back depending, all the way to my knees and I feel movement in my knees along with a huge pop.
I was not like this before my surgery, and due to these problems I have not been able to have a normal life as a teenager. I can’t walk or stand as long as I should, almost all exercises cause my legs to become weak and give out on me, and I am living in constant pain. Is there any thing that could have gone wrong with my surgery that has caused these problems?
I am just wondering, cause before I had the surgery done, even though my left rib cage was poking out further than my right and my right shoulder blade was poking out, I was still able to function as a normal person, without my legs giving out on me and without me causing pain. If there is anything you know, that would have caused this please let me know. Also, I have the rods from the top of my shoulder blades, all the way to my waist.
Please and Thank You,
Alyssa C
Story of Broken Rods
Greetings:
I and my 22 year old daughter were reading your web site. She was diagnosed with severe advanced scoliosis at the age of 12 (her spine was like a question mark). She was born with a club foot and at the age of 11 months, she came down with Rotovirus, almost killed her. The doctor at the time preformed a spinal tap because when they attempted to take blood from her lifeless little body, the blood was clotting. I am wondering if the club foot and the spinal tap had anything to do with her scoliosis?
Also, on your web site, it states that scoliosis is not genetic. You are the first physician I’ve heard to claim that. My Grandmother, Aunt, Mother and myself have scoliosis, but not bad at all. I hardly have a curve to my spine. My son was also diagnosed with it too, but the doctor sent him to physical therapy (which he continued at home) and then a podiatrists fitted him with orthotics in both of his shoes (one foot was flat as a board and the other had a small arch). He is fine now.
But my daughter! What happened to her!? She had those damn Harrignton Rods placed in her back in 2000 (at the age of 12). She is now 22 and complaining about back and neck pain. Her surgeon said she had in inverted neck, blah, blah blah, sounded like he didn’t care. This was two years ago. I finally took her to another spine specialists, took xrays (yesterday) and the damn rods are broke and her spine is back to the original curve!!! Grrrrrrrrrrrr! I and my daughter are pissed! I want to kill someone (but I won’t, I’m just an angry, hurt and frustrated mother).
She will be having an MRI and CT Scan this week and we’ll take it from there, we’re thinking about removing the rods, not sure. Her scoliosis was so bad it was cork-screwing and gathering up her lung and just totally messed up her teenage years and her life.
But I just wanted to tell you my personal feelings regarding scoliosis and it being genetic.
Thank you for taking the time to read this.
Kathy S
Had Scoliosis Surgery 1984
Hello my name is Maria, I am 54 years old and I have Scoliosis.
I underwent surgery in 1984 to correct my 54 degrees scoliosis. The doctor used Harrington rods and Luque wiring to straighten the spine. Things went well for the first few months but since then I have suffered intense pain in my spine and in my ribs. I was told it was all in my mind and go away etc…now it has been discovered I have a curve above the rods and one below the rods, I have discs that bulge and joints that have seized up. Every day I suffer sciatica -some days are better than others, on the bad days I want to climb the wall as the nerve pain is so bad. I also need to rush to the toilet when the pain is very bad. It is not a pain like lumbago, or muscles but more nerve pain.
I recently moved to France and they discovered the new curves and discs and nerve problems, and there is nothing they can do. Due to an infection, following a spinal injection, I am no longer allowed to have spinal injections and so the pain continues. Can you tell me -I know it is difficult what are my long term prospects are ie pain level will it increase, will my mobility become worse. No one has told me anything about this condition and I feel angry and badly let down.
yours faithfully,
Maria
Email From 22 Year Old Who Had Scoliosis Surgery at Age 14
HELLO, MY NAME IS Deborah I WAS DIAGNOSED WITH SCOLIOSIS AT THE AGE OF 12. FOR ONE YEAR I HAD THE BACK BRACE AND MY CURVE SHOT UP FROM A 30 DEGREE ANGLE TO A 45 DEGREE AND IT WAS STILL CURVING.
AT THE AGE OF 14 I HAD MY SCOLIOSIS SURGERY WITH THE HARRINGTON RODS. I AM NOW 22 YEARS OLD AND HAVE BEEN DIAGNOSED WITH CHRONIC BACK PAIN.
I LEAN FORWARD WHEN I WALK, I’M STARTING TO HAVE MORE TROUBLE EVERYDAY WITH WALKING AND LIFTING MY LEGS, I FEEL I PINCHING FEELING IN MY SPINAL AREA WHEN I WALK, AND I GET A LOT OF NUMBNESS IN MY LIMBS. THIS IS VERY PAINFUL FOR ME. IT HAS WORSE SINCE I HAD MY TWO KIDS. THE DOCTOR WHO HAS PERFORMED MY SURGERY IS GONE AND HAS RETIRED.
I DON’T LIKE ALL THE MEDICATIONS I’M ON AND IT’S VERY PAINFUL TO WORK BUT I HAVE TO WORK. I WOULD LIKE TO KNOW HOW I CAN GET HELP WITH MY SITUATION. IS IT THAT THESE ARE THE AFFECTS OF HAVING SURGERY? CAN IT BE FIXED? PHYSICAL THERAPY AND PAIN MANAGEMENT CLASSES ARE NOT WORKING WHAT ARE MY OTHER OPTIONS. CAN YOU HELP? IS THERE ANY ADVICE FOR ME?
THANKS
DEBORAH
More Pain After Scoliosis Surgery
I had a spinal fusion with instrumentation 6 years ago, I’m fused from T1-L2. I did very well after surgery, but I have developed a spondylolisthesis (grade 1) in my L5 (pars fracture).
I didn’t know that the fusion would put more stress on the lumbar bones that were not fused. Now it seems like I’m having more pain than ever.
What are my options? (non surgical)
S.B, Albany, New York
Hi Doctor
My son Mark is pretty much your typical post-surgical scoliosis case. He had his surgery in February 2006 with double rods from T2-L4. He has constant neck, low back pain and headaches that range from mild to severe until he gets a chiropractic adjustment from me.
He’s then good for a few days or longer depending on his activities, which are extremely limited to sitting on the computer. He no longer is able to participate in any sports except video games and board games (absolutely nothing that would require twisting or even the slightest impact).
He is 21 years old and started college as a junior at Northern State University this August. He has to live on Vicodin and Valium to manage his headaches. I have encouraged him to see a chiropractor in to at least get his cervical spine adjusted but he is afraid to let anyone adjust him except me. The surgeon who did the surgery put the fear of God in him about chiropractic adjustments. Can you believe the gall of that guy?
The last time I took X-rays of Mark was last summer before he left for college. I asked him if I could show them to people considering the surgery. He said “yes, on one condition, that I tell them not to get the surgery unless it was life threatening.” That was the first time he expressed his remorse.
My heart is broken. Feel free to share this email with whoever you deem appropriate.
Your friend,
Mike
Pain Following Scoliosis Surgery
Dr. Hersh,
My curve was a 55 degree curve going left, After the surgery I think they said it was reduced somewhere between 20 to 30 degrees. I was 12, and I honestly didn’t understand everything… They had said that if my curve was 60 degrees, my ribcage was going to collapse my lungs and kill me… I don’t know if that is true, but I remember being scared about getting the surgery or trying to live without it.
I have been in chronic pain since I can honestly remember… I remember crying to my parents at 5 years old about back pain, and it’s honestly no better now. I have good days where the pain is minimal and others where it hurts to lay down, sit, stand, or anything else. I have not had a day in my life where I was pain free unless I was on vicodin.
In my late teens and early 20’s I noticed that my spine grinds against itself when I stretch or move. It causes more discomfort, and can hinder my performance at work.
I have always tried to be strong, and realize that this is a part of life, but when I decided to actually research, I realize that I am not alone. People that don’t know about scoliosis or the surgery assume I am lazy, but that is not the case. Everything causes pain anymore for me. Even trying to work.
I hope some of this has been helpful.
Thank you so much.
Melissa M
Hi Dr Hersh
I came across your website because i have scoliosis and had surgery for it about 14 years ago when I was 12. the definition you have for it i found interesting. even though I had surgery for it. I still have a lot of those problems to this day. I never knew that it can play a role in your menstrual cycle because I have irregular periods. My dr also said that my back was one of the worst cases shes seen. I just wanted to say thanks for your info.
Joan
Dr Hersh.
I wish I had a non surgical scoliosis treatment, my spinal fusion was almost 11 years ago and I still have pain, not mostly back related but from the incision site, was an anterior spinal fusion for the lumbar area and they went in through my left side and removed a rib for the fusion process,it hurts daily and my Dr from Washington University said they dont ever do it that way anymore, strictly through the back approach.
Anyse
Hi my name is Hillary S and I’m a spinal fusion patient. I don’t know the exact vertebrae that were fused but the rod is in my lower back and the surgery was anterior instead of the average posterior. I had scoliosis corrected when I was 14 and now that I’m 21 I’m starting to realize I’m “healed” and that the excruciating pain I experience on a daily basis isn’t going to go away. I’ve been to physical therapy, a chiropractor, and a pain institute where I’ve had steroid shots and was given a tens machine. None of these treatments have helped. I’ve been asking to be prescribed pain killers that would actually work, but since I’ve only found the narcotic medications to work they don’t want to put me on them at such a young age. Other than that, I’m not prescribed any meds to help deal with the pain.
I saw on your website that most spinal fusion patients are termed permanently disabled for the rest of their lives and this is exactly how I feel- yet no one wants to believe how much pain I’m experiencing.
I was wondering if you treat post-op patients. The pain institute I go to here is extremely professional, but I don’t feel like they have as much understanding of the spine as you do at the Scoliosis Institute.
Thanks,
Hillary
19 Year Old Girl Who Had Surgery at Age 14
Dear Doctor Hersh,
My name is Susannah. I had scoliosis surgery in 2007 when I was 14. I’m now almost 19 years old. I went into my doctor about amonth ago and he told me that my spine was continuing to curve even after the surgery and recommended surgery again fusing from my L2 to my L4.
I already have fusion from the top of my spine to my L2. I’m still experiencing pain and it’s incredibly noticeable that I have scoliosis. My hips are off as are my shoulders and it’s very frustrating and makes me extremely self conscious. I was wondering if you could give me a second opinion.
I do have x rays and I attached a picture of one of them if you would like to see it.
Hope to hear from you. Thanks again.
Susannah
Recent Email from Surgical Patient
I have scoliosis and have a two surgeries, one to “correct it” and install rods, the second to take the rods out. I have some fusion due to to rods being installed. Can you help correct my spine even though I had some spinal fusion? I need someone to help me. I am 31 and have been on and addicted to every kind of pain pill available since I was 18. Everyone I talk to says that nothing can be done. I can’t keep being in this much pain with it getting worse every day.
27 Years Post Harrington Rod ( A MUST READ)
Hello,
I stumbled upon your website last summer after becoming frustrated with conventional post-surgical treatment for patients. Needless to say, what I’ve discovered is disconcerting, vague and scarce. Your site finally put to rest some questions I’ve long had about my condition….but I’m still not sure I’ve found “hope”.
In the past 2 1/2 years, I’ve experienced a rapid decline in the way I feel. Basically , everything hurts, all the time. I used to only get a sore lower back after exertion, or pull a muscle in my neck. But now, if I’m sitting or standing or walking – nothing is very comfortable – or it’s rare that I’m not aware of something hurting, pulling, popping or locking. I’m only 49 – my 82 year old parents don’t have these aches and pains – am I doomed to progressively get worse?
It seem no one can answer that question. Admittedly, you’d need a crystal ball , but has no one cared enough about the long term effects of this brutal surgery they were doing on unsuspecting adolescents who had their whole lives ahead of them? We were operated on, told we were “fixed” and sent on our merry way.
These surgeons should be ashamed of themselves. Granted, they were working with what they deemed to be the best solution at the time – I give them that – but now that all of those children are adults and beginning to suffer its consequences.
I’ve been to P.T., D.O., acupuncture, massage therapy, you name it. The only therapy which has helped consistently relieve my pain, muscles pulling, joints out of whack – has been cranio sacral osteopathy and other manipulative measures.
My question to you is this – is there anyone at all working on post-operative solutions to enable peole such as myself to have hope, to possibly give specific exercise/ guidance to better our physical bodies to endure a lifetime of activity ? Or am I relegated to becoming a prisoner of my own body by the age of 50 – with no hope – …..
I sincerely appreciate your time, if you have read through my entire ramblings. As you can tell, I’m a bit angry, sad, frustrated and find that no one seems to care about us!!
Thank you kindly for giving me a bit of your time.
Surgery in 1980 – S curve was at 49 degrees they got it to 25 degrees during surgery, it’s now back up to 45 degrees …..one Harrington Rod – still in place.
ON MY LAST STRAW
Diana (NOTE- Names and ages changed) 49 years old – 5.10 tall Female New York, NYS
Dear Sir,
I need help with my predicament of having to deal with pain as a result of scoliosis surgery. I have depression, I cant work and my life is just heading in a downward spiral.
I am at edge and i need help.
Ms. Maria Ali
Another Failed Scoliosis Surgery Following Harrington Rods
My name is Gabriela and I had the Harrington rod implanted when I was in the 9th grade. I am now 49 years old. I have had severe back problems (lower) for the past year and it is now almost too much to bear. Any suggestions would be greatly appreciated.
Kathleen W – Toledo, OH
In Pain Following Rod Implants
My daughter had the rods inserted in her back several years ago. She is in so much pain that she can barely function. They had her on Loratab for years and have finally changed her pain medicine to Oxycotin. She is so petite that her little body is having a hard time handling the medicine. She has to be shaken to wake her up. She’s told that if the rods are removed her body would collapse. Is there any way to help her?
Thank you
Kathy S
Post Op Scoliosis Surgery Patient
Hi,
My name is Michael and I have scoliosis. I had the Harrington rod surgery when I was 18 (1995), I am now 34 and I am certain my curve has returned to pre-op or even gotten worse than before. I had the surgery after years of bracing and body casts, which seemed to control the curve. However I was without treatment for a couple of years and the curve progressed rapidly to the point that I was told surgery was the only option to prevent worsening of the condition even premature death as a result of worsening of my condition.
I underwent most of my treatment at the Nuffield Orthopaedic centre in England, the surgery was performed at another hospital, but by my consultant from the Nuffield. However I now live in Canada.
It was by luck that I came across your website and you have given me new hope. Which brings me to the question that many post op patients seem to be asking. Is there anything more that can be done for me, what options do I have, if any and how do I get to this help and treatment, should any treatment be possible?
Many thanks, in advance for any help or information you can give me.
Eagerly looking forward to your reply,
Thank you again,
Michael B
Failed Scoliosis Surgery
Dear Dr. Hersh,
My name is Bev and I have scoliosis. I started wearing a back brace in 7th grade. By time I was in High School I was getting tired of wearing the thing, let alone the constant teasing that went along with it. I was told by the doctors that if I don’t wear the brace my curvature will continue to get worse, and that having children in the future would drastically curve my spine. They made me believe having a Harrington rod put on my spine would not only straighten me out, but that it would prevent further curvature. I had the Harrington rod surgery when I was 17 (1981). I’m now 45, and can tell you the surgery did not straighten my spine, nor did it prevent my spine from curving.
One year after the first surgery the bottom hook broke off the spine, pulling the bar along with it. I was told surgery was necessary. The surgeon went in and removed the hook, a piece of wire, and cut about 3 to 4 inches off the bar. The doctor left the remaining bar in, along with the hook at the top (area between my shoulder blades), and the small piece of wire that appears to be wrapped around the hook. It is now 30 years since my first surgery and I’ve been having pain in my back and legs(mostly the left). The orthopedic surgeon is telling me the leg pain is not associated with the rod. The x-ray shows that the little piece of wire is broke, other then that he said the bar has not moved. He said I can have the bar removed, but said he cannot tell me that will relieve my back pain. It almost feels like I can feel the bar on my spine. I’m concerned surgery will be like jumping out of the frying pan into the fire. I wish I would have known about other alternatives when I was younger.
Bev J
Message from Mother of 15 year old with 2 Scoliosis Surgeries
My 15 year old friend had two surgeries for scoliosis because infection from the first. She is out of the hospital two weeks now still vomiting, has fever on and off and unable to eat. She is in constant pain. What can the mom do for her? Should she return to the hospital before she gets worse? My mom who is a nurse, is concern and thinks she should seek treatment. Thank you for your help.
Email from Scoliosis Surgery Patient – Rods Sticking Out
I am a 32 year old mother and did the scoliosis operation in 1995. Since a couple of years, the rod can be seen from the outside, the head sticks out and looks like a deformed bone. Do you know whether there is any way I can get it corrected?
Please reply,
Kind regards,
Shaniqua
Email from 16 Year Old Who Had Scoliosis Surgery
Just asking a question I am 16 years old and I had back surgery a year ago, my appointment hasn’t came up yet to check on my back! Last time I visited my bottom screw and the lower of my back was loose! Lately I just wanted been feeling pain and on the left of my side it feels as if my something is tightening up and it hurts painfully its by my rib cage were it hurts! I just want to know does this mean my surgery didn’t work? Is something wrong? Please please email me back. Thank you!
Email from Scoliosis Surgery Patient
Hi there. I am a 45 year old female and had Harrington rod fusion from T4 – L4 in 1977. The long Harrington rod broke and was removed in 1985. The shorter compression rod broke and was removed in 1989. I have steadily worsening signs of flat back syndrome, with associated pain. Is it possible to employ any of your treatment methods in cases of previous fusion or are your methods effective only in the non-fused spine? Thank you for your time.
Lucy L.
Email from patient with Harrington Rod Surgery
I cried when I read your “untold truths”. I had T2-L4 fusion with 2 overlapping Harrington rods in 1974 at Children’s in Boston. I was ok until 1987 when I blew L4/5 and bulging L5/S1. I was fortunate that the “Back God” of Springfield MA was an ortho resident at Children’s when I was there as a patient. I saw him frequently at first but then over the next 25-30, every couple yrs and as needed. Then he retired and there’s seemingly no one in the area who can/will even try to evaluate me.
I was on opioids for 16 years, more than 15 PT courses, 3 Pain management. I stayed fairly active, like able to walk dog, do stairs, stand up sort of straight, bend etc without it being torture. In the more than 2 years I’ve been off pain meds, my activity level has basically gone. Pain management this time thinks Pain pump could work but the condition of L4/5 may affect the ability to place catheter. Also talking about wires inserted into my head for help with headaches. I cannot even walk to the mailbox across the street without great difficulty. I’m twisting and almost contorting or so it feels. My left groin is like a raw nerve I’ve lost mobility in measurable ways.
I am lost to find a back doctor who can accurately assess my spine. Do you know of any qualified docs in the Springfield MA area? Boston? Although the trek to Boston is challenging. Would it be appropriate to make an appointment with one of your doctors. I’m not looking for any miracles, just solid honest assessment.
Thanks,
NOTE- MANY OF THE NAMES ABOVE HAVE BEEN CHANGED FOR PRIVACY.
