Anyone have Scoliosis, Spinal Fusion with Harrington Rods

[Photohappy03]

My quick story to share about my fusion, I am wondering if any of you have had any issues?

I had harrington rod/fusion surgery for scoliosis almost 23 years ago. In the last 10-15 + years, I have had terrible complications from the surgery, neurosurgeon calls it flatback syndrome. My 2 rods start at T3 and end at L2, they took bone off my left hip at the time of surgery to fuse the spine.

I have been in and out of doctor's offices, counselors, physical therapy, seen many massage therapists, chiropractors, multiple prescription use, and also have used many modalities of alternative medicine. Because I suffer from chronic pain all the time, fibromyalgia symptoms, myofascial pain (tons of knots in the muscles...everywhere), pinching and burning of nerves and especially around the rods/fusion and my legs, extreme dizziness/vertigo, migraines that last for weeks, TMJ disorder, bulged disks, abnormal forward curvature (at least 30%) of the cervical spine, degenerating disks, pre osteoarthritis, arthritis, bursitis, sciatica, numbness , burning, and tingling of extremities, muscle fatigue and weakness/atrophy, edema, shortness of breath, thyroid issues, gall bladder issues, hypoglycemia, poor concentration, memory problems, moodiness and depression, sleep issues... I think that just about covers it all :(  I never had any pain or any issues before my surgery, even though I was only eleven.   Many other scoliosis friends that have had fusions are suffering with the same things as well because of the long term outcomes.   If you have also had issues, please share...

[Cantbearmuchmore]

I had in 1990 rods with hip bone graft. Now I have vertigo, degenerative disc, always in pain but but now suddenly tripled in pain, hands feet go numb and hurt get tight, plantar fascitious on foot that hip done, headaches, memory loss , can't concentrate or focus, leg pain, I could go on and on. I don't know what to do

[Scolisue]

Have you tried therapeutic ultrsound? Or any form of  physiotherapy with yoga?

[Titanium2]

Harrington rod fusion with hip graph in 1975. I am now 53. Chronic pain for 15 years. I'm off all pain meds except a low dose of tramadol. This is like taking baby aspirin. We all need a miracle. My quality of life has diminished to no life at all. If their is any new procedures for such an old fusion I would love to know about it. Future is looking bleak.

[MScott_1]

Wish I didn't

[rudkin1950]

I had Harring rods placed when I was 13, removed at 16 later and replaced 9 months later. I was hit by a drunk driver Nov 2012 and now face chronic pain and the same laundry list that all of you echo (degenerative discs, arthritis, headaches, TMJ, numbness, weakness, ect). I am now 34 and have been advised to not try to have children with my husband of 10 years. I take multiple muscle relaxers and pain meds daily to remain able to work as an accountant. Prior to the wreck in 2012 I could manage with OTC meds and heating pad. I do water exercise 2x a week to try to remain active with the least amount of impact. If the pain and medical issues are this intense at my age I dread to see what it turns into in the coming years

[seannlinda2013]

I don't have the flat back but My family physician refuses to listen to me so now I am on a quest to find a good back doctor near me. I had my surgery 25 years ago and I am in horrible pain it takes me 12 hours just to clean my downstairs, because I have to stop so much because the pain gets me to the point that I'm almost in tears. I really need advice

[TNJanetM]

I am interested in hearing more about your revision surgery.  I had harrington rods put in place 45 yrs ago.  I am 59 now.  At 48 I started having severe burning in my hip and great tightness/tension in my lower back.  I began walking--as much as possible, which wasn't much--on a treadmill, changed my diet (plant-based--so increase in antioxidants; reduction inflammatory foods), both resulted in loss of 30#.  I have done very well since then until the last 6 months.  I find some days I can't straighten up and my lower back is very stiff and painful.  Sitting for long periods seems to worsen the symptoms.  I am wondering how to find a Doctor that  is familiar with Flatback and can advise me how to continue having an active full life.

[Scolisue]

I have many of the same issues as you. How have you handled your pain recently?  I had a Harrington rod  put in 1980 for "S" curve. It went from t4 -l4 ... I was 17yrs. I had no issues until after my 3rd pregnancy, about 10yr. Since then things have gotten worse.  I have Flat Back Syndrome, walk with a forward bend, and cannot straighten up at the end of the day. I have taken Arcoxia for the pain and stiffness and thinking about going for therapeutically ultrasound. Do you know anything about this treatment?

[TNJanetM]

I went on a RX of an anti-inflammatory for abut 2 yrs.  It did help tremendously, until it started giving me stomach troubles.  It was a NSAID.  I eventually had to go off it September 2017.  Fortunately I have not had any real issues since that time.  I do still struggle to get straight, when I have been bending over (such as gardening) and then stand back up.  I am very stiff and it is sort of painful, but that does go away within a few minutes.  As I walk by a mirror or see a picture taken of myself, I notice I do lean forward.....it is more embarrassing than troublesome/painful.  So for now, I'm doing well enough that I'm not seeking any medical help.  I know other people without a rod up their back that have worse issues who are my age--62 or younger.  So not complaining.  I have found a doctor who I believe will be of use to me when I need it.  He is in Chattanooga.  

[flatback80]

I had a spinal fusion from T4-L2 in 1980.  I am now 52.  I have been recently reading alot of posts about Harrington rod patients who are having a variety of symtoms.  Those who mention gallbladder....if you look up which vertebra affect which organs, you will see that the thorasic spine affects the gallbladder.  When it is fused and immobile, it would make sense that you will have difficulty.  I personally have had mine removed. I have many symptoms of fibromyalgia, severe headaches, have flat back syndrome, sciatica, numerous sharp shooting pains, numbness etc in my hands, feet and legs, TMJ and probable Trigeminal Nueralgia.   I have neck and head pain often and most recently started dealing with Vertigo.  YES!  I do think these issues are all a result of the fusion.  I do wish that someone would do some research on those of us who are suffering so many years after the fusion.  I know when I had it done, it felt like a "damned if you do, damned if you dont".  One key thing you must do to have the best quality of life is to stay as fit as possible, with weight bearing exercise, stretches, walking etc.  You also MUST keep your core muscles strong. I would suggest seeing a trainer or physical therapist if you don't know how to do this.  This is probably the best advice I have received in all the years I have been to multiple doctors.  Sadly, I really don't think there is not going to be alot of relief from most of these symptoms,  You just have to learn to make the best of it and help yourself as much as you possibly can.  Being overweight will increase the symptoms significantly.  One doctor told me to just do as much as I can for as long as I can.....so that is what I do.  I stay active and enjoy life!  Don't focus on what you don't have or can't do.  There are plenty of people worse off.  Do focus on what you can do to help yourself.  And, maybe one day wit the progression of medical technology, there will be better results for those suffering.  Hang in there my flat back friends!

[Judybern]

There is absolutely a cure to all your symptoms.  I just had it done.  Do you walk with a tilt forward?  Fatigue, stenosis hip pain...all related to rod.  Contact me for more info if interested..  Half of the rod is removed and your lower spine is reshaped to a natural arch in the waist area, therefore letting your hips be in proper alignment.  I am pain free!  My doctor worked a miracle.  Your condition is flatback syndrome.

[Jen5forever]

I had the same surgery in 1986, since the I have had 5 children and have been relatively active. Over the past 8-9 years I have been experiencing the same symptoms and never for the life of me would have contributed any of them to my fusion. I often get flu-like symptoms out of the blue, they are very extreme but usually only last for a few hours, sometimes I suffer for days without actually getting the flu. I also get very tired suddenly and without reason. I had been diagnosed with Seasonal depressive disorder, however the symptoms are now appearing no matter what season it is.
I'm not having problems with the actual rods but I am with the surrounding muscles. I have flat back syndrome and it's getting harder to stand or sit for prolonged periods of time. The problem is generally in my lower back,legs,and glutes, I often experience burning,tightening,tingling,and numbness in my back,legs,and fingertips. Headaches are a part of my everyday life. I do attribute the muscle pain and numbness to my surgery but would never have contributed anything else. I'm glad I found this forum, I've learned a lot.

[LoriB1248]

It was weird reading your description I felt like I was reading my story.  I have a lot of the same problems.  Dx w scoliosis when I was 12 with an s curve.  Spinal fusion at age 22.  Curve went from 58 degrees to 18 degrees after surgery.  I have 2 titanium rods running along each side of my spine.  I had gall bladder surgery in '08.  I have burning, radiating pain in my shoulder blades and lower back and sciatica.  I have bulging disks, herniated disk, disk degenerative disease, spinal stenosis, and osteoarthritis in my spine.  I suffer from migraines, muscle spasms in my feet.  I can be forgetful and have problems with concentration or recalling info.  I have TMJ.  Sometimes my neck feels like it is stiff and will lock.  I have burning and tingling in my toes and finger tips.  I have to get regular massages to relieve the pain.  I often feel very warm or cold and gets tired easily.  I have never been dx with fibromyalgia.  I know a lot of my symptoms are similar to fibro so it's hard to tell if some is attributed to my scoliosis surgery (scar tissue) or to fibro.  I have an aunt who has fibro. so it always made me wonder if I could have this.  We have a similar medical hx.  I don't take pain meds and like to think I have a high tolerance for pain.  Also, my aunt who has fibro is addicted/dependent on pain meds and that always scared me.  I regularly lie on a heated pad at night to relieve the tightness of my muscles.  

[lighthousegirl]

Hello Doris, I am also a medically retired nurse due to flatback due to the harrington rod and fusion from the early 1970's. Worked for three decades and had to stop at 52 because of the pain and fatigue from it. I have applied for disability after realizing after being off from work it was not going to get any better, it fact it is getting worse. Did you apply for ssdi ? If so how did it go for you ? It is a very misunderstood condition. Seems like people don't understand how you can be alright for many years and then you're not. I know even some coworkers didn't understand it. Well, it shows now it my posture.I have the forward neck,stooped over appearance and constant swelling to my left lower back. I am afraid to have the revision. I know some have good results but others continue to have pain or complications from the surgery.So now I just do what I can and let the rest go. Who knew all those years ago this could happen to us.

[doris1022]

I don't want to alarm you but I have scoliosis and the harrington rods and a lot of the issues that others  have stated.
The stomach problems can be a sign of other problems though.

I am a RN medically retired due to the scoliosis etc.

I would go to a gynecologist first and they can run a ultrasound to check the ovaries and uterus. if that is normal then you will need a colonoscopy. usually recommended for ages 50 and older or anyone having issues.

hope this helps.
Doris C. from georgia

[koehn]

I had a spinal fusion in 1980 with the Harrington Rod.  I am fused from just above my tail bone to between my shoulder blades, 13 vertebrae total.  I lived in Dallas for the years 2002 - 2012, with the last 1.5 years in NC.  Ever since moving to NC my back pain has increased 1000 times over.  Had a child in 2007 which gave me permanent numbness in my left leg.  Each winter/early December, my lower back/left side gives me significant pain, but worsens when I lay down.  I can take me over 10 minutes to roll from my side to my back due to the pain.  Once I am up and moving the pain dwindles, but is always present.  Since my pregnancy I am not as fit/svelt as I used to be.  I know that more exercise could help along with weight loss, time and pain prevent me from doing much.  I am glad I am not alone.

[mytyangel3]

Ha ha that is funny well I guess now you all can see I found the problem and have done a lot of research did not realize the last post was mine I did not think that it worked last time but now se that it had . Do any of you ever get worried about other problems accruing because I have noticed as I age I am getting more and more worried about things happening I am making myself crazy by doing it to how can I help myself feel better and realize I am as normal as anyone else ?

[mytyangel3]

I too have had rods inserted in my back when I was 14 I am now 30 have had the same type of cramps and gassy problem and found out it was my gulbladder and it was very inflamed you should have a dr send you for a full physical it helped find mine and most of that has gone away with my gallbladder being removed I too hope that by us all having this surgery it does not shorten our life span but as far as I know it does help I guess only time will tell us all though . Great to know there are others who have had the similar procedure done as me . My e mail ***@**** if anyone would like to talk further it would be great for me thanks , best wishes

[Thalsne]

I had Harrington surgery in 1980.  I am now 48 and have two grown children.  Several years ago I started experiencing pain in neck and lower back. It was painfully just getting out of bed in the morning and could not turn my head to the left very far at all.  I started seeing a chiropractor for symptoms.  He is very knowledgeable and also did reasearch on scoliosis and Harrington rod.  My pain now is very minimal. I do see him for maintenance every other week.  Regular alignment is very important.  Works for me, anyway!  

[Thalsne]

I had Harrington surgery in 1980.  I am now 48 and have two grown children.  Several years ago I started experiencing pain in neck and lower back. It was painfully just getting out of bed in the morning and could not turn my head to the left very far at all.  I started seeing a chiropractor for symptoms.  He is very knowledgeable and also did reasearch on scoliosis and Harrington rod.  My pain now is very minimal. I do see him for maintenance every other week.  Regular alignment is very important.  Works for me, anyway!  

[Snowqueenvt]

I am 34 and had rod fusion on my thoracic area at 15. I too have had children. I get a little sciatic, hip numbness and toe tingle, occasionally now but experienced chest pain, migraines, vertigo, and sharp stings around my rod after having the kids. I think it was my body's way of adjusting after two births. Yoga and a nonsedintary lifestyle is the only thing that will help me. Chiropractics occasionally and massage are a good tuneup a few times a year. Go to your primary care provider if necessary and ask for a a referral to see a spine specialist (orthopedic surgeon). THE BEST thing I could have done. I had an X-ray and was hsppy to see all intact. I was tlid it does  not make your life shorter and that it can be removed. After much discussion I decided with the Dr that my pain symptoms, easily managed with exercise, were manageable to the point that removal was not a better option. In fact the exercise program will probably increase my lifespan and give me more time with my precious babies. Make an appointment and get sine peace of mind. Orthopedic surgeon :)

[mytyangel3]

I am 30 years old and had the Harrington rods put in my back when i was 14 years of age.  I have had children and am starting to have a few problems.  Chest pain in the upper part above my breasts and in the very top of my back where the scar starts.  Is this normal?  Does this shorten our life span?  I am very worried about it and can not get any answers anywhere.  I have also been having problems with my lower abdominal area.  Where i wake up every morning with gassy crampy feeling its almost like being on my period 24-7 . Who should i see to get some help? A regular doctor or what?

[heartfluttersflyawayplz]

Hi  I to have the rods running from my neck to the bottom of my back. i was 65 % off so they took it down to 30% i think , i was 35 at the time of surgery am now 51 and have a few of the problems ya are having. i do have the bad headacke and the muscles ackes. my right shoulder to move towars the back stings and burns, my hubby gives me massages a lot and it helps, i have lots scare tissuse in my top part of the back. my lower back hurts bad at times but i only have 3 verbras left so i can bend.

its been a good surgery for me because it was pulling my left lung and heart to the right so it had to be done. i donot have shortness of breath but i do have chest pains or chest ackes sometimes for days or hours. do ya have that.
i do have numbness in my left hand sometimes, and of course lots headacke and neck ackes from my neck being so straight now.

i have checked on here many times to see if anyone had this problem ,never saw anyone with the rods etc. sorry ya are going throuhgt this but glad to see others with the rods and know am not in this byself.

have worry many times its my heart have had it checked out they say its fine, so can only say its my back. do ya have this problem.

[Mahagonylee]

I am a 31 year old female and had rods/fushion done in 1997 in the same exact area (t3-l2) with bone graft from my rib. I also had horrible shoulder pain after and now suffer from every single symptom you decribed above. My fibro and vertigo is getting worse and is very annoying. I am a nurse and I'll be the first to tell you that most Docs are gonna tell you that the surgery and symptoms are not related, well I beg to differ. I do believe they are related. But  the best thing you can do is know your body and what works best for you. I have tried and taken many medications for my fibro but Savella seems to work best. It is the only drug currently on the market that is specifically for fibro. However, it is expensive and comes with it's own list of side effects. For that reason, I do not take it everyday, only during flare-ups. And even then I use natural remedies along with it. Believe it our not, the best remedy so for is exercise. I know, I was very much a sceptic at first and it seemed to me that exercise would only make matters worst. But it worked! And no it's not a cure but it does help living with it better. And living with it is just a reality. No wonder drug or remedy is gonna drop from the sky. So it's best to stick with what works for you best. Hope this helps someone a little. Stay positive!:)