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Flatback Syndrome-excruciating pain in lowerback and the thighs.

Started by Glenda May Fox on 12/29/2013 8:55pm

Right now I am sitting on my couch writing this because I have spinal fusion from t-2 thru l-5. I had harrington rods placed in 1984. I had the double curve (s) and it was progressing at such a fast rate that I could become paralyized or die because my ribs started to move front to back and they would eventually pierce my heart and lungs. I am a 61 year old woman and I have two sons who were 8mos. and 3yrs old at the time of my surgery. I didn't have much help from my husband as he worked construction to pay the bills (we had no insurance) so he was gone alot. I had a couple of family members who would take turns and help out for the a month or so and then I was left on my own. It was very difficult, but somehow I made it through it.

The surgery helped with the pain I was going through and it left me with tolerable pain. Which was ok with me. The rods lasted about 18 years and that is when the most severe pain and excruciating pain started up on me again. I received Lortab 5 for the pain, which didn't even touch the pain but that all they give me at the time. I kept seeing our local doctors for two years and I didn't get any help from the Dr.s in our little town. Thats when My family physician told me that I had to go back up to The University of Utah orthopedics Clinic where I had the initial surgery and have the Doctors that did my Surgery take a look at me. It was now October of 2003. I thought I wanted to Die cause the pain was so bad! They said that the lower part of the rod had loosened itself and it had become embedded itself into my spinal cord. They said that I needed to have surgery to remove the rods and they continued the fusion from t-3 thru l-5 and they placed 6 screws in the area of l-3 to l-5. What it did was to create a new problem which is called flatback syndrome. I am now back in worse pain in my lower back and my thighs, 24/7 pain rated 8-10 and I take Lortab 10 now and it barely touches the pain. I am always tired, yet I cant sleep due to the pain in my lower back and excruciating pain in my thighs. I cannot do my daily household chores or any kind of exercising because it causes the pain to worsen. I hurt and I feel useless. I feel like I am ready to die to take me out of this misery. I was wondering if anyone out there has the lower back pain accompanied by the Rt. and Lt pain on the sides of their thighs?

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Glenda, I have not been ... from 1451319966@facebook
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Does anyone no or have flatback syndrome and you have chronic pain in the lower portion of the back. I would like to talk to someone who might understand what I am going through!

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Glenda, I have not been diagnosed with flat back but am looking for a dr that knows something about it. I had surgery 34 years ago for double curves. Ive lived with pain daily. About 2.5 years ago the pain in my lower back and hip area worsend. Ive seen several doctors but no diagnoses...they just continue to refer me to pain management clinics. I began to think that maybe this pain was just in my head. I now I live with the daily struggle to get through the day. I can't stand straight have severe pain in my low back hips and thighs. I get some releif from massage but that relief last a few hours. I understand how you feel. The pain keeps me from enjoying life, sleeping and even household cleaning.. I'm searching for any info I can find about flat back.

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hi Glenda
I have flat back syndrome and scoliosis and I have been going crazy on the web looking up information on both of these surgeries, who to trust and go to, I live in the boston area and they are supposed to be famous for their hospitals but im no even sure I trust them. I have just had to many wrong diagnosis that it is very hard to know where to go now adays for a surgery. if you want any information that I might be able to give you don't hesitate to ask and if you want my email let me know......take care it is not easy at all,each day is a challenge......................
helen

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Hello, I also have scoliosis with harrington rod and fusions from many years ago. I too have flatback syndrome related to this. Each day is a challenge due to fatigue and pain. I try to use the SPOON THEORY, and pace myself, sometimes it works, sometimes not. This is for ericsangel. The best site I have found for information re: surgery, physician info. is on yahoo- fiestyscoliosers or flatbackers group. Also, the srs site and their forum. Just so you know this is a very extensive surgery and can take a good year to recover from. Also, it involves being fused to the sacral region with hardware and cages. There are only a few in the US that have done several of these type of surgerys and that are qualified. I have read that at least 40% of us have developed flatback from this, so we are not alone. Best wishes for better days and nights. Believe me, I understand.

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thankyou so much Susie for your information, I will look it all up. have you have the surgery for flatback? if you haven't are you planning on it? my neurosurgeon has spoken to me about the surgery and he said if he did it he would do the scoliosis and the flatback at the same time, but I have heard that doing both at the same time ,psychologically is not good for the patient. it scares me when I think about it until I get so frustrated trying to walk, and then when I try to carry a glass of milk across the room its like im carrying a 300lb block instead of a measly cup of milk, I body goes way over, for the last couple of years I would say to different doctors why is it when I carry a cup I have to strain to walk up right it is so light, none of them had an answer, well if any of them had any information about flatback they would of known that,that is a classic symptom, like I said I don't know who to trust, there was a doctor in texas I was going to look up and get a consultation call with. well this longwinded response is coming to an end, thankyou again Susie. take care, helen

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Hello Helen, Always nice to talk to others in our situation. It sounds like you have never had surgery but, also have flatback and scoliosis. The surgery may not be as difficult for you since no old hardware to remove. It is a big surgery no matter the case. I want to correct one thing I said, that being the forum is the scoliosis. org forum , not the srs forum. I have not had the surgery and unsure as to if or when to do so. I have had my rod in for four decades and have read after many years it can become embedded into bone.That would make it very difficult to remove. Other reasons are, I am stooped over with the swan neck, but not to the point I'm staring at the floor. There was someone in my state that had this done by one of the best in this state and she ended up with partial paralysis and loss of bladder and bowel. I know this is rare but, very scary. I am not in a position to go to another state at present. Also, I have seen others continue to have pain or complications afterwards. On the other hand, there are many very glad they had it done. So, I look at it as a gamble. So do all the research you can and make the decision thats best for you. Come back to the site sometime if you can and update us. Bless you. Susie

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Hello- I had scoliosis surgery back in the seventies, and I ended up with flatback syndrome. I've had 2 surgeries for the flatback , in 2009 and 2012, and i've been left with terrible pain which I was already taking strong pain meds for, (i wont even mention the humiliation I've suffered for having to take pain meds) and I've also been left with trunk rotation, and this is driving me absolutely crazy. Before the flatback surgery I was pitched forward and in so much pain in my hips and surrounding areas, now, i have just as much pain, plus i have even less mobility, my spine is fused further down then it was before, and the deformity is more severe and noticeable,and after the surgery in 2009, one of the rods broke off and worked itself down in to my buttock, where it stayed for over a year, as I didnt want to face the flatback surgery again. I eventually had to get another surgery though,and it now feels as if my rib cage is scraping the tops of my hips , as if I need to be shimmed up , off myself. This condition is literally driving me crazy, and I'm 51 yrs old, and wish I was dead, at this point. I thought I had taken care of my scoliosis when I was 11yrs old, and for this to have happened 30 some yrs later, and continue still, despite 2 surgeries to correct the flatback, has been devastating to my life, and the pain and immobility is constant. The pain, the meds, the immobility, the deformity, etc have all reduced my life down to nothing, other then laying on my bed. I even lay down in the car now, and I'm driven around by the one friend I have left. My Mom passed away several years ago, and my Dad is 83 so I'm basically alone.,and this disability has changed me so much that I'm practically house bound. I will take my dogs out sometimes, but its usually late at night when there arent many people around. My life is very lonely and painful, both physically and emotionally.

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I had A&P fusion of the spine from T4 thru L5 with Harrington rod placement in 1990. I spent 4 months in a purple cast (I still hate purple) and partially in a wheel chair. Not how most people want to start their first year of high school. My back is still twisted all up as they couldn't fix that at all but stopped my spine from puncturing my lungs and liver. The day I got my cast off the doctors informed me that I had flat back syndrome from my surgery. I have never gone a day without pain since.

I successfully carried 6 babies to term, and did natural childbirth. Not like I had a choice, an epidural needle wasn't getting into this spine! But not I am 39 and just the thought of walking across a room bring anxiety. Will my back give out? Will I be leaning so far ford that people stare? And talk about difficulty being a mom to 6 kids. Sports....holy cow.....just walking to the stadium is a workout. It can be 20 degrees outside and I am sweating bullets from the pain. And talk about weight gain! There are days I can do NOTHING! And I haven't slept in years. Right now.its 6th and I have yet to be asleep. I have gone from the bed to a chair to the recliner and have yet had my back stop hurting for me to sleep.

I have never been on pain meds ever. I have asked, but doctors just tell me to take a motrin. Um, 1) those don't do anything to this kind of pain. 2) allergic to all nsaids!!!! People who don't have these problems can NOT possibly understand the type or amount of pain we have to deal with. I can see why some people welcome death. It would be a relief for sure. But I have kids that need me, and I just want to be a mom. Not just a person who is always in pain.

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Hello everyone,

I had an L5 S1 spinal fusion with a 360 cage put in last year. I have been having upper neck and back pain. I was told by my physiatrist at Rusk in NYC my back is now very flat after the surgery. i do believe that I am also suffering the I'll effects of having a flat back. Does anyone know if a flat back after a fusion can be surgically fixed? I'm currently looking into conservative treatment, but I want to know what surgical options are out there.

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I have flat back due to the Harrington rod scoliosis surgery in 1979. I did very well till 2 years ago, now constant lower back pain, can not walk or stand for long. I was first told I need a pedicle subtraction osteotomy surgery. PSO. When reading the details, I wanted to scream out loud. Really. Did some research and I got a 2nd opinion and now I am going to have a ALIF surgery. Anterior and posterior approaches. I feel good about this. My quality of life sucks now. Very limited. I am getting more hunched over too. So I am going for it. Anyone out there had this procedure?

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I have had back pain about 7-9 years and finally I had an mri in 2011 which showed I had severe stenosis and soliosis. The first doc i saw said my back was so screwed up he would try surgery on me so i tried physical therapy and injections which gave me a little relief. Finally i had enough and found someone to operate on me. He did a laminectomy and fusion of L 4-5. Now I am walking at an angle almost falling constantly and have a lot of pain. It is driving me crazy. I recently saw a doctor from Baylor Scoliosis center in PlanoTexas who told me I had flat back syndrome. he said I would need an 8-10 hour surgery through the front and back to correct it. I am 69 years old now and in good health and I am a little hesitant to do it. What do you all think about it. Hurtin in s florida.

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Looking for cacowgirlb....my heart breaks for you, we have so many things in common. I just found this site and read your post.I know the devastation of isolation and the rejection from ppl dropping like flies when you cant be a social butterfly. I don't know why they don't allow for emailing profiles, but I will be your friend if you want. I'm in Texas, would love to talk. I am 53. Double harrington T2-L4, 1980 when I was 17, everything is a mess as a result. Too long a story to reiterate. I hope you get this message. Cindyb733atgeeeeeemaildotcom

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Hi Cindy from Texas, I didn't see your message until just now, almost 3 months later, and I just wanted to say thank you so much for reaching out , I really appreciate it and u sound like a very sweet person. I would love to talk some time.

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Hi Glenda.....I just joined this to see how others cope with grandchildren and picking them up, etc. But first let me respond to your post. Firstly, I'm so sorry you are having this pain. The pain in your thighs sounds like nerve damage from the L5/S1 or even L4 area. You shouldn't, have this pain....I had some of this after my more recent surgery but it was part of the healing process and I was told it would disappear. It did. ....and I found someone who fixed all of this for me without the monster salvage surgery involved for Flatback that I'm sure you probably have already looked up. You and I have some similarities. I will explain.

I had Harrington Rod surgery for scoliosis in 1978 after wearing a brace for 2 years with no success. Adolescent Idiopathic Scoliosis was diagnosis although since it was found at age 2, I'm thinking it was probably congenital. At 13 it was so bad my uterus was pushed to the side and I was not going through puberty. My one lung did not grow normally because my rib cage didn't allow it. My heart was the next concern. They told me I would end up in a wheel chair if I did not have the surgery and there was a possibility that the organ involvement would kill me. My Mom and I agreed to the surgery.

I wore the body cast post surgery for 6 months, as I'm sure you did as well. I will be 53 next week so we are of the same era in scoliosis treatment. They basically fixed us up and let us go.....have a great life, don't lift anything over 10 pounds. Then we go on to live our lives, lift much more weight than that, I had two children, worked fulltime since I was 19 and went to college at night. All was good except for some pain that started about 18 or so years later. I was fused from T2-L3. I don't remember what it's like to be flexible, but I now realize I was way more flexible then than now, but now I have no more pain because I had a second fusion from L4 to S1.

I'm what they term "extreme fusion"....my MRI's went to a conference in Chicago apparently. I wish they'd asked me to go too! I had severe flatback syndrome as well and a host of other things that were degenerating the only discs holding me up at the time L4 though S1...and then they found out L4 wasn't supporting anything.....it was frozen in 1978 and precarious. The only suggestion was salvage surgery which you have probably heard about ...the extreme surgery that requires two separate surgeries and a year long recovery with no guarantee and at our age....maybe not a good idea. I was giving the option of the first only at one Beth Israel in NYC and approval would be determined only after a meeting of surgeons to assess the risk....I think the risk more for them.

After several doctors wouldn't touch me including the major NYC hospital that did my first surgery (Special Surgery). Columbia said no, Bone and Joint Disease said no. My local spine surgeon said he could not due this in good consciousness...it was beyond him and that I should look to accept the inevitable. My physical therapy place told me I had to leave as I was a liability and my Dr. was only sending me there because he did not know what else to do. My doctor said that my bone age in my lower discs was 72. I was 48 when I was told that. Everwhere I went I was told I was a liability. I got a wheel chair and figured that it was just going to be my future as by 2012 I was falling a lot and lost feeling in my legs frequently. I investigated disability retirement. I had intense pain. The quality of my life was lying on a heating pad.

Only two places would look at me, Beth Israel with reservations and NY Brain and Spine Surgery (who I noticed advertise on this site, Jack Stern neuro and Seth Neubardt ortho). I saw them and they were great. They met with me immediately, went through my insurance and said whatever it covered they would accept as full payment......I think they also saw me as guinea pig, but that worked out because they really cared about me. They conferenced via skype with 15 spine surgeons across the country and even internationally. All said full salvage....then he asked "If this was your daughter what would you choose for her" . .....they then all said "the experimental mini salvage". They called me and spoke to me and told me it was my call. I chose the mini salvage and they scheduled me for the next week. In addtion to the PLIF L4-S1 and all the other repairs, he reversed my flat back even though I at first felt like I'd been jacked up like from a tire jack too far backwards and would fall backwards a bit when I started walking, but it has already progressed forward again a bit which is why they said they did that...that it would compensate for that for a while. They could not remove the harrington rod as it was too embedded. They opened the canals where the nerves were compressed stopping the thigh pain, and did multiple surgeries in one day. I have the PLIF with pedical screws and a titanium cage and now L5 and S1 fused as well. I have limitations, but I work full time as a high school teacher and I rarely sit down. I take only advil and was off all prescribed pain meds by 3 months and back at work by then.

You shouldn't have to live in this pain. This worked for me and I can't say it will work for everyone - but early 60's is young enough to live an active life that you deserve....and while it was not pleasant, but we scoli's already know that part..ha....I have a wheelchair covered in cobwebs in my garage and I work fulltime and unless you knew, you could never tell that I have all this hardware. I can't run or jump, don't go to the gym or yoga (I hate it when people say "Oh, you should do Yoga"...okay people , see me standing here...look I just looked side to side....okay that's my yoga! (sorry for the vent), but I can walk, even fast, do many things I always did. I do hire someone to come clean twice a month because I don't buy fancy purses or clothes like my colleagues do and it's my splurge and benefits all of us....when I do retire which Im' thinking will be at 55 so I can collect right away I'll have less income but less taxes taken out so I plan on continuing that. Yes, by Friday I'm exhausted holding my self up. I'm having a bit of a hard time watching my 10 month old granddaughter but that's my own stupidity and soon that will get easier and I will not pick her up as much anymore. I don't think you have to accept this....I am not a doctor but I've been down the road of just deal with it and found a place that basically gave me a life back...a better one then I'd had for decades actually pain wise. I'm not flexible but hey, at 53 next week I'm not going to try out for the Olympics or anything....and the cost was worth it because I can sleep without pain, I take no pain killers by Advil on rare occasion. I was living with the kind of pain you are for too long and probably wouldn't have done anything about it because after our first surgery, we never forget what that was like, but my hand was forced when the risk of paralysis kicked in and my kids were still both in high school then. I wish you the best. If you can get to NY and want to meet with NY Brain and Spine Surgery....they have ads all over this site and a website that explains everything. They gave me my life back when all others said no to me....I hope someone can say yes to you and give you the relief you deserve. All the best - Lisa

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Jennifer Palmer Lafferty....see my response to Glenda above. The ad for where I had my mini-salvage express flatback repair was right next to your post. I in no way get anything from suggesting this place, but these two doctors saved my life.....there are things that can be done besides that monster salvage surgery for flatback...Dr. Jack Stern and Dr. Seth Neubardt from NY Brain and Spine Surgery. They gave me my life back in so many ways. I wish you all the best.

Lisa

fused T2 - L3 Harrington Rod 1978
fused L4 to S1 plate, pedical screws titanium cage 2012 with mini "salvage surgery" to repair flatback an multiple other degenerative issues.
Status: working full time, no pain killers.

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Hello to all, I was a nurse and got hurt on the job 12/1990, I had a herniated L1 which fell into the foraman (where the canal that holds all nerves) and my left leg went numb. MY doctor in Arlington Texas, said I had to have back surgery or else I was going to have a paralyzed left leg due to the herniated disk had fallen into my foraman and was going to severe the nerve to my left leg. I had a fusion. After six months, I had my second back surgery due to the first fusion not fusing and it had dislodge and L2 had herniated also. Then my doctor fused both of them plus added hardware to keep the fusion s in place. After three long years of therapy, I finally went back to working. I did great, no pain. But in 1998 I fell into a very abusive relationship, in which he hurt me so bad that I herniated L3. and my right leg went numb. There I go, having my third back surgery. My doctor took out the first pedicaI hardware and extended the hardware up to L3. I was better, but the pain was getting worse everyday, but the numbness went away. I had to have the fourth back surgery, the pain was so bad I could not sleep, sit, or walk without sever pain. Some how L4 was herniated, that's what the MRI showed. Again, back to surgery fourth time. I had therapy, but did not stay well. I developed flatback syndrome, with severe pain to my lower back and radiating to my thighs. It was worse on my left leg. My primary doctor send me to a neurological doctor, she performed a nerve conduction on my left leg. That's where they put these three inch needles on the surface of certain muscles, and then touch the tip of the needle with a small amount of electric current and see how your never in that certain muscle reacts. The doctor tells me I have nerve damage to my left leg and that is why I have so much pain and spasms on my left leg and puts me on some great spasm medicine. So, all of you out there who have flatback syndrome, I feel your pain it is a chronic pain that never goes away. It takes all you have to make it through the day and sometimes at night. I feel worthless most of the time. I can't do nothing, not even wash dishes, because the pain gets worse. I am on opoids and that does not relive all of the pain. The only source that helps me get through the day is God All Mighty and what Jesus Christ went through. All the pain he suffered, does not compare with my pain. He died in agony for our sins. And he still lives in our life today. I pray that no one will commit suicide for the pain we have today. Can you imagine going to HELL and continue forever having this pain? I don't. I want to go to heaven and live there with no more pain, suffering, or tears. Revelation 21:4 says "He will wipe away all tears from your eyes, and there shall be no more death, nor sorrow, nor crying, nor PAIN. All of that has gone forever". For those who have faith, please believe this and look it up in your Bible. For those, who don't believe please ask Jesus to come into your life and he will make it better. Just have patience. If I have offended anyone, I am sorry.

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