hi my name is nicole i am 19 years post op i was 13 when i had the surgery i am now 32 im reading all these post and i am just speachless i have been telling my doctor for the last five years how bad my pain is ive seen specialist and they all tell me its in my head that my spine is fine but yet i have a S shape curve that is mostly on the right side of my back no one will give me pain meds and the pain is getting worse by the day all the same symtoms everyone else is experincing on here i tired of paying doctor fees for them to tell me there is nothing wrong the pain is getting so bad i cant sleep at night if i sneeze im on the ground its scary not having a answer of why and where the pain is coming from guess our answer is scloiosis!!!
Hi all,
First, I am sorry for your pain, and I completely understand because I have it too. My surgery was in 1986--a modified Harrington Rod. I also had surgery to remove the rod about 15 years later, due to sharp pain in my shoulder and back.
I think what we all may have and continue to develop is called Flat Back Syndrome--or some variation of it. There is very little good information about this syndrome online--however, it affects many scoliosis surgery recipients up through the 90's. I think the resason for the information blackout on Flat Back is because it is completely caused by the surgeries we have had, and now that doctors know more about the spine, it is highly preventable (thru different surgical techniques). As described to me, it basically happens because when they straigten out the side-to-side curves, the doctors also straigtened the front-to back of our body curves, and that lordosis which they removed was actually a natural part of our own structural integrity. Removal of the lordosis causes the rest of our spine to compensate in its alignment, and we can continue to compensate for years, until our bodies are not able to go any further, and then everything starts crumbling at once. Flat Back is also highly depressing, because it is progressive and has no real "cure". Also, most doctors aren't specializing in it because it has no "future"...That is, once we die off, there won't be anyone left with it because it doesn't happen anymore, given new and better surgical techniques. In fact, many doctors (general practitioners and the like) have not even heard of it...and in spinal centers they are of course loathe to diagnose it, because there is little that can be done. Everywhere I have found to read about it, it says the only thing to do is prevent it by having had a different surgery in the first place..., that is so unhelpful to those of us who already had our surgeries years ago and are suffering now!
There are a few specialists who do another highly invasive surgery to attempt to correct flat back. You can look into those if you wish. I took a look at the risks associated and the relief achieved and decided that route is not for me (though never say never)...but it may be for another person, and apparently it is better on that sooner rahter than later, so by all means look at the possibilities if you are interested.
It seems likely to me that a large part of the reason doctors stop seeing their patients years afterwards when this manifests is not about the insurance, but is about their own liability regarding actually causing the syndrome in us...I think a class action lawsuit against the hardware makers would be realistic if we could ever get it together...However, it is likely there are time limits on this and likely they have passed by now.
All of this is a lot to swallow, but it is important to know that we will likely not "get better". That said, there are ways to help ourselves "feel better" in the time we have. Here is what I have come up with...
First, I try to ENJOY the time that I have being fully mobile and able to do things...Though I am ALWAYS in pain, it is often bearable enough that I can do a lot...so I do as much as I can, and try to choose doing what I love. I do not "put off" physical things that I want to do...I climb mountains (on occasion), scuba dive, drive a jeep, enjoy my family, and spend my time, rather than wasting it.
I try to use backpacks instead of one-shoulder bags, and try hard to get rid of excess weight in them...Surprising how much this helps!
I do yoga often, even if I am not an expert and don't really buy into it...not necessarily the "inversions", but the body stretching helps with the pain, at least in my body
Try to maintain a healthy weight...This is a tough one for me, as I tend to self-soothe with food to dull the pain...and as the pain gets worse it really inhibits physical activities...But I can still swim, which is a good one...I also take water aerobics...at 43, I am the youngest in the class by about 30 years, but it is soooo worth it!
I get good massages as often as I can afford...For other people these are a luxury...but I try to remember that for me they are needed to help stop me from using pain killers and dulling my life unnecessarily. Yes I feel guity still about doing this, cause Im not rich or anything, but they really help.
I find that hot water is soothing for me, and heat in general...So I try to take a hot bath (even if it is super short) about once a week. More if I can fit it in.
I use a wedge or a book when sitting, especially in the car, putting it under one side of my buttocks, which shifts my spine into a position that is comfortable...Oddly, it is on the other side than I would expect...
I use many pillows at night to be comfortable...I am a side sleeper, so I put one at my waist to stabilize the spine, one between my knees to provide proper leg alignment, and one under my head, but "rolled up" by my neck, stabilizing my neck straight instead of holding it up...I also found that when the pain gets worse, for me a firmer bed actually feels better.
I am slowly making my house "invalid ready" now, before I really fully need to...It is an expensive process and better done thoughtfully and over the long term than in a rush. But it is safer for everyone anyway to have a sturdy grab-bar in the shower, and a bench to put in the tub if needed, etc. etc.
I am buying an old beat up apartment in a warm area for retirement, and as I look to rehabbing it, I consider things like the steps, and making the bathroom accessible and with a built in shower bench, in case I need to use a walker in the future.
I try hard to think of "medium term" as my long term plans...
I maintain my health insurance at all costs...But I am also currently looking into long term care insurance...
Has anyone else come up with things that help them through the pain of post scoliosis-surgery alignment issues? I would love to add more tricks and tips to my toolkit, and know what gets you through the days.
I am sorry we all go through this...I wish there were a better way...If anyone knows any, please share :)
Jess
Hi, my name is Betty. I was 43 when I had spinal surgery. My back was. not only curved in 2 places - lower and neck areas - but it was also twisted (spiral like when wringing out a wet cloth) My specialist was top dog and had a new procedure for implanting rods to the spine. His method was to implant it on the inside of my spine. He cut me from the belly button right around to my spine. Had to collapse one lung to access the spine. I was in hospital and rehab for 10 weeks. It did improve my condition but gave me another problem with pain from the large incision. I have run the gauntlet with pain pills including Morphine and Oxycocet but these were discontinued as they were affecting my breathing. I am now 67 and am in constant chronic pain. I am now bent so much that my chin is almost on the kitchen counter. The only pain relief I have to is from Tylenol 3 and always a heating pad at my back. I have difficulty walking because it causes further pain so am very much disabled. When I look at photos of myself at a young age, it is obvious that my hip is out and I have suffered pain for most of my life. But nothing was diagnosed until I was in my forties. If you think there is a problem with your posture, please, please have it checked as soon as possible. Thank you all for posted your stories. They have helped me so much to know that there are others experiencing pain and they I'm not just winging
Amy,
Im also 37, with many of the same issues. my surgery was in 1993 (same rods). I have taken pain pills on and off, but feel the same way about being on them. Im to the end of my rope and dont have any answers. Im the mother of 2 with a VERY active life, but the pain is going to the point that I can not sleep, sit etc. if you get any answers, let me know too. Thanks
Jen
Hello, thanks for posting this, I´ve read something about the flat back syndrome yet, but I thought that it is only my problem because i had almost flat back before the surgery yet. So now I know that it is worst with the surgery and that s the reason (probably) why I relapsed with the curve after some years. Doctors however told me that they don´t know why it happened, they supposed it was because of some sudden move which I did and I was angry at myself because of it, now I know that I couldn´t help myself and prevent it.
What I do to prevent pain is as following: I use many pillows to put under me while i´m sleeping on side, I don´t use pillow while sleeping on my back, just little one which only fullfil the hole under my neck.
I use often neckcollar, but not that one used after car accidents, it is big for me, I had t try some smallers and take the one which i woke up in and felt good. i´m useing it while driving the car, and also using a pillow under lumbar area.
I wear often lumpar waist or how it is called, it is streching and hold your lumbal area holding itself ,it helps me much.
I dont cary anything weight under 5kilos, I don´t bow in my back, I try to excersise especially to strighten my abdomen muscules.
I have to take care haw much I stick my head in front of computer, because it makes me so much neck pain.
I don´t do any sports except from swimming and walking.
I can totally relate. I had CD rods put in when I was 16 and for many years I was in shape and active, gave birth, worked full-time, etc. Always had some pain but just sucked it up. I am 39 now and I am in pain day and night. The pain in my hips and lower back is getting worse and worse and the neck and shoulder pain is becoming unbearable. I have to work full-time to get by but I am suffering all day and in the evenings all I do is stretch and alternate with ice and heat for the pain. My entire life revolves around my pain :( I am finally going for the first x-rays in 20 years. I can't suck this up anymore. Starting on Arthrotec hoping that helps more than Naproxen. Wish me luck.
I didn't have scoliosis surgery until age 54. I am now 62. They also corrected a kyphosis in my lower spine. I was fused from the thoracic area down. It's nice to finally find a forum where this specific issue is being discussed! I had a lumbar disk removed during my surgery. The crunching pain I had in my lower back was gone when I "recovered" from the surgery (couldn't even sit for fifteen moinutes for months recovering from this.) I had to have this surgery at a late age to preserve organ function. . .they didn't do the surgery much when I was a kid, and since they didn't screen for it, my problem was really overlooked. Anyway, about the pain. I have tried every "natural" method out there. I just could not control it without medication, although I'm happy for those who can. I was spending so much time just lying around crying, and I lost a lot of friends declining social invitations, and when I did drag myself somewhere I was not able to stay for any length of time and unfortunately I felt myself in tears and complaining a lot, along with being impatient and short-tempered. Some people "get" pain and others don't. So basically what I do now is take 50 mg tramadol twice a day, a total of 200 mg a day. It's the only medication I can take on a somewhat regular basis, but only through trial and grievous error as to when to take it, because it is addictive. Cold turkey withdrawals from tramadol are a horrible nightmare so I am warning if anyone wants to go on this pill, if you need to stop wean off slowly, a quarter of a 50 mg pill a WEEK. And anytime you are on medications, don't skip the blood tests.
Try the Egoscue Method. I had scoliosis surgery when I was 15. Nothing helped me either. When I was 25, I started the Egoscue Method and my posture looks so much better. The pain is gone. I'm 30 now and still do my e-cises. The Egoscue Method focuses on training your muscles to pull your bones where they need to go and also engaging muscles that have not been used in a long time. When you restore proper posture, the pain will go away and you will have increased strength, function, and flexibility. Anyone can do the Egoscue Method, even if you're in a lot of pain.
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Hi Amy. You and I have almost identical stories. And, according to my surgeon, we're less than 1% of those who have had the Scoliosis correction surgery.
In the past several years, I've altered my lifestyle completely. I had a bad bout, and was saved by an intrathecal morphine pump. This allowed me to get off the fentanyl patch, oral morphine, and other horrible medicines which changed me completely. I was able to become active again, and in the past 2 years, found that exercise and massage therapy help make this awful plight somewhat tolerable.
I'd love to chat with you more, as I've never met any victim of Scoliosis to have pain like I do. Your graphic description of our pain made me cry, because our pain sounds so alike. I am sad to hear others suffer like I do.
I hope you are somewhat better since you initially wrote this post. I also hope you respond to this at some point.
FYI:
I'm 26 and had my first surgery in 1998 at 12 yrs old. At 15, my rods were replaced because they broke (my Scoliosis came back and broke them). When I was 18, my pain had been awful for 4 years, and they decided the rods were causing it. So, they took 'em out. Of course, that didn't change anything, except for the fact that the fever spells went away. At 21, I got the pump. At 23, my life changed for the better. I'm 26 and still have pain daily. I hardly sleep. If I fall asleep, it doesn't last long. The only thing to help me cope: smoking pot.
Digitally yours-
Sasha