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View Full Version : When do you have enough pain for surgery?



abhbarry
07-12-2006, 10:22 AM
This is not a question with a definitive answer, but I am having trouble determing how much pain is enough to warrant surgery. I don't remember a pain-free day, but of course, that amount of pain varies greatly. When I have pain in my daily life, it becomes almost normal and I'm not sure how to judge my own pain. Sometimes I question whether my pain is enough. . . (this may sound ridiculous). My thoracolumbar curve is at 55 degrees and my surgeon is more interested in the amount of pain I have than the degree. to make the final decision on surgery.

The other day after standing at the grocery store, I had to lay down to get rid of the lower back pain before starting dinner. Is that too much? I don't get that severe pain everyday, but it does happen. Other examples of the more severe pain - I couldn't stand through my wedding photos, I through out my left arm playing darts the other night, etc. But, of course, there are days when my lower back is just a little achy sometimes.

Any advice or personal experiences would be helpful. Thanks a bunch.

jelysc613
07-12-2006, 10:28 AM
Hi Abhbarry,

In my opinion, if the pain is limiting you or making it difficult to do or enjoy things, it's enough to want surgery. About 4 months before my surgery, I began having awful pain. I couldn't climb a flight of stairs and I had to sit or lay down all the time... honestly, I was downright excited for my surgery. I just wanted to feel better and be a normal 12 year old kid again! Don't worry about your pain "not being great enough" to have surgery... everyone has different pain thresholds and if you think you'd benefit, then I think you should look into it!! Best of luck to you, whatever you decide!! I hope you feel better soon.

:D

SandyC
07-12-2006, 10:57 AM
Like you stated pain is very subjective. I think when you have pain all the time, it becomes "normal" and becomes hard to tell your doc how much you are having. I personally hate the "1 thru 10" thing. If pain, everyday, to some degree is normal then 1 is what is normal for us. Not the 1 is no pain, at least for me that just doesn't happen. If you have to lay down after going to the grocery store then you are proabably having substantial pain. If you can't stand long enough to take pictures of one of the biggest days of your life (wedding), then you need to be telling your doc about these incidents. Perhaps keep a record of times when you become unable to do normal daily activity to show him.

Good Luck

Karen Ocker
07-12-2006, 03:26 PM
Although I had pain which woke me up at night it was helped by a pillow under my hip. I only needed Aleve and kept fit with Pilates. It really did not stop me too much.

What really scared me was loss of lung function and progression. My doctor told me not to wait. I also couldn't breathe after a big meal because my stomach was crumpled on it's side(according to my gastro). :eek:

Pre-op 30 cerv-80 thoracic-40 lumbar.

I read that triple curves compress the chest sooner that double or single curves ----obviously.

Singer
07-12-2006, 04:08 PM
I know exactly what you mean about pain seeming normal. I have a very high pain threshold but this past year (with a 70-deg. thorocolumbar curve) I started experiencing pain that actually STOPPED me from doing stuff, like working outside or sitting through my daughter's basketball game in the bleachers. Before it had been troublesome but it had not stopped me -- that was the tipping point for me. Also, this past year I have also experienced what I consider to be scary pain in my legs at night, when I can't get comfortable in bed. Even though it's not excruciating, the leg pain seems very ominous to me.

That being said, I also experience days when my back feels great. I guess that's just the way it is!

Since I'm only 51 years old, I can't imagine what life would be like in 10 years if I don't try to do something about it now. So I'm scheduling surgery for next year (with some trepidation!!).

Chris

LindaRacine
07-12-2006, 06:12 PM
Hi...

In my case, it was when the pain got bad enough that I had to stop doing some of the things I like (hiking, shopping, museums,etc.) I think you'll know when the time is right.

--Linda

summer
07-12-2006, 06:20 PM
I actually wasn't in too much pain. I did have difficulty standing and sitting for long periods of time. My curve was also progressing one to 2 degrees every year with no signs of stopping.

Suzy
07-12-2006, 10:34 PM
I think when the pain affects your life its time to do something about it. You couldn't stand for your wedding pictures? That would be enough for me let alone not being able to stand in line. Also, the progression of the curve is a factor. Mine was 4* per year. Plus the younger you are the better as well as being in shape. It won't get better (the pain) only worse. Do you really want to be in the type of pain that makes you lay down everyday? Plus once you get to 50* you are a candidate for surgery in most Drs. opinions. The nice thing about this surgery is you can plan ahead. You can get in shape if (your not) and take vacations. You can get your house in order and line up help. I think as women we can tolerate a lot of pain and that does make it hard to cry uncle.

always smilin'
07-12-2006, 10:48 PM
ABHBERRY-
I've had the same question - only it my case its a revision surgery I'm lookiing at. My first surgery I really had to have because my lungs and heart were being compromised. Earlier today I wondered why I even thought of having another surgery as I was "relatively" pain free. Tonight, however, I just cleaned closets for 2 hours and the pain from bending over to pick up closets and toys about sent me through the roof (that'll teach me to wait so long to get those out of the way closets clean:). I still am not 100% sure when I'll have revision but I'm sure it will have to be someday...I'm just taking it a few months at a time to see what I'm mentally and physically ready for.

(Also, in a previous link you had asked about doctors in Madison - I sent you a private message re: my thoughts - take them for what they're worth:)

Have a great evening -
Always Smilin'

dawney
07-12-2006, 11:30 PM
My decision was the same the pain has stopped me from doing things that need to be done or that I like to do. Going to my sons sporting events are agony. Walking for any long distance is very painful.
I went to the Madonna concert tonight, which was great, but I was in agony the whole time.
I also hate the 1 to 10 scale. I also have a very high tolerance for pain, but I don't remember the last time I was a 1.

sweety_26zg
07-13-2006, 03:30 AM
Hi,
I am 26 years old and have 55 degrees thoracic curve and by now don't feel any pain...does someone have curve like me and what are your symptoms..i mean do you feel any pain and when did it start?

I am scared becuse i don't want to go to the surgery if i don't feel any pain and that's my case.
Also i was at my doctors office and he told me that if the curve is more then 50 degrees it will get worse by itself....so i was wondering if i do the pilates and yoga for scoliosis every day will it stop the progress of the curve?

Thank you

abhbarry
07-13-2006, 09:47 AM
Thank you all for you responses to my original question. It is good to talk to people who actually experience this kind of pain because it is so difficult to judge and difficult to decide what to do.

As for sweety's last email, I feel that is especially difficult because I hear it is true that curves over 50 do progress, but my surgeon told me the surgical decision is based more on the amount of pain you have than the degree number. That is only one opinion though - not necessarily a medical fact.

I also heard from my surgeon that some of my other health issues are related to the scoliosis - such as a mitrol valve prolapse in the heart, thyroid issues, and hypoglycemia. I hadn't heard this opinion before last week. If scoliosis starts affecting other things, I'm scared at what it would continue to do. Does anyone else have issues like this?

Best wishes.

lelc2002@yahoo
07-13-2006, 10:21 AM
Hi---
I am achey at night after standing & cleaning up the kitchenafter dinner.... that's when It hits me..I feel like a accordion(spelled?), morning on I'm doing good most days & stretched out but by night I shrink up & feel like a little tiny woman with no torso...& a big fat stomach! Most evenings I feel like my whole frame(spine) is collapsing but then again I should rest & sit more during the day but normally run around like a crazy getting things I want done when I have the time & boys are content!
As most of you know, I have more a digestion issue/acid reflux& my poor stomach is completely smooshed into a tiny spot(on MRI) I have a huge hump on my left low-mid back.....but pain during the day is low except for rainy/arthritis days...
So now ya know why I'm scared about these operations & the pain factor coming because I don't have so much now...I'm sure I'll feel pain free when I go in for surgery that morning.............just the way it works, right???! :p
60/60 curv 85 kyphosis/95 thorocolumbar curve..........aug 1st surg...
http://lynnebackattack.blogspot.com

Wakatie
07-13-2006, 10:32 AM
Hey Sweety, in response to your question, there is no medical evidence that anything other than surgery can reduce the size of a curve. Bracing can prevent it from getting worse, but generally is only successful while you're still growing. Keeping fit is definitely a GOOD idea if you have any back problems, but I don't think that it will be enough. If you have a scoliosis greater than 45-50 degrees it will likely keep getting worse. You will probably have pain eventually. You might want to put some thought into whether it would be easier for you to have the surgery now, rather than waiting several years. Time is on your side because if you wait 12 or 18 months I don't think it makes much of a difference (if you're not in pain). Do you have kids? Do you plan to? I also have a 55 degree curve (lumbar) and I am in a lot of pain. I'm 20 years old and I'm thinking that having the surgery now, while I can just live with my parents and take a semester off school and work, would be a lot easier than waiting until I'm 30 when I might have kids and a job, and recovery would be a lot less convinient. Also, while everyone recovers differently, you tend to do better (faster) when you're younger than when you're older. Just something to think about. :D I'm don't think that 55 degree curves always get worse, so maybe your doctor could monitor you annually or even every 6 months to see if it is increasing?


Kathryn

berta@aloha.net
07-13-2006, 11:36 AM
I also went thru my teens and young adulthood without pain, and ignoring my scoliosis, thinking that surgery would only be for cosmetic reasons and that wasn't worth the risks. Now I wish I had done something sooner! At 57, I'm in daily pain and finally now know that I have to have surgery to give me any quality of life in my future and to keep this progression from putting me into a wheelchair. One thing I think about is that now the surgical process for scoliosis is much better and since I hear about so many that had surgery early in life, now have to have revision, I guess it's OK that I did what I did.
My pain starts earlier in the day now and some days are worse then others, but all I know is that it IS preventing me from many things in life, including aeorobic type exercises. I do pilates, what I can, and swim some, but have a torn rotator cuff, so I feel so limited. I used to play tennis and run, but now that's not good for me and it hurts. I've decided that I have no choice but to have surgery and just that desision gives me hope.

Suzy
07-13-2006, 01:59 PM
Just another thing I remember my Dr. telling me. Once you get to 50* curve then gravity becomes a factor as well as curve progression. It can pull you over more then just the usual progressing of curve. Great huh? Like there aren't enough problems with curve progress.....

lelc2002@yahoo
07-13-2006, 02:25 PM
suzy---I believe that...I can feel that gravity working on me right now... :eek: ...Ly
60/60 curves....

Wakatie
07-13-2006, 03:01 PM
Berta, do you know what your cobb angles for your scoliosis were in your youth, and what they are now? I'm interested to know how/if they progressed.

Kathryn

sweetness514
07-13-2006, 05:35 PM
My curve didn't progress from my late teens to when I did have surgery(60 degrees both times) at the age of 26- and actually my lumbar curve decreased. Pain started to bug me on a daily basis, and that happened b/c I had to stop working due to other health issues and all the laying around made my muscles weak. Went to a chiro who took care of my pain for some months but then it came back and I decided that it was time to get surgery b/c of the pain, the fear of lungs and heart being affected and I only had to have posterior and not anterior as well YET.

I still have pain, and this is three surgeries later. Some pain got taken care of, some is less and some new ones appeared-neck stiffness, hardware inflammation(screws)- and I have done many things to help lessen these pains. Everybody is different but I took the risk of getting surgery b/c I wasn't pain free with my 60 degree curve, so might as well take a chance is what I thought. My ortho was straight with me concerning pain and if the surgery would take care of it, I only wish he would have told me about revision surgeries and long term risks(pains).

Btw, I also was told that scoliosis could be the cause of stomach problems and hypoglicemia, but I tend to believe it's not all of the time.

sweetness514
07-13-2006, 05:38 PM
I went to the Madonna concert tonight, which was great, but I was in agony the whole time.



Missed it, and I was down about that. Too many people pushing me would have been worse though at this point. Got a DVD from a friend though :) Last time I saw her was in '93 with the Girlie Show Tour, it was the last time she came to town.

dawney
07-13-2006, 09:44 PM
I took an extra painkiller before the show, but it was still rough. Would do it again, we had awesome seats.

sweety_26zg
07-14-2006, 06:00 AM
Hey Wakatie,tnx for answering me...well i don't have any children but am planning in next years to change that...you are right about sooner the better for surgery recuperation,but i found steady job right now and can't plan any surgery at least 2 or 3 years if i want to keep it...of course if pain will start and begin to torchure me in a way that i can't do nothing i will go sooner....is it a rule that everybody with scoliosis greater then 50 degrres have pain and eventualy has to go to operation?

berta@aloha.net
07-17-2006, 01:28 AM
Wakatie,
Sorry I didn't answer you right away, about what my curves were before and now. Yes, they did progress. I've been guilty about being facing my scoliosis all my life, with little pain, so that is why I guess. I've only had my curves measured 3 times, I think, my whole life. When I was diagnosed at about 16, even though I remember feeling my lower back was bigger on one side than the other much sooner than that. I don't know what the curves were measured at then. (hmm, wonder if my 81 yr. old mother has any of that info. still....but doubt it!) When I was about 33, I had 33 upper and 34 or so lower, about. Now at 57, (talk about ignoring it until the pain won't let me!), I've just received the report.....50 upper and 60 lower, and +4 rotation in lumbar, plus stenosis. So.......YES, it progressed a lot. And I've always been active, kept in shape and had a really healthy diet, so those genes just take over, and age and gravity make it worse. Get fixed while you are young, I say!

sweety_26zg
07-19-2006, 02:26 AM
You said that you've excersised a lot...did you excersise pilates and yoga and it didn't help you? That's not good...
you're curves progressed in spite of that....well during last 13 years my curve got worse for 11 degrees and that was in my teen age and i didn't excersise at all...so many people tell me that it is not that bad at all ( i mean that'ts about 0,84 per year)..what do you think?
thanks

berta@aloha.net
07-19-2006, 12:08 PM
Hi Sweety,
I was just natually physically active in my teenage years, but didn't do any particular exercises. I didn't exercise to keep in shape until my late 20's, but have been since and I'm 57. I'm sure that pilates and yoga and aerobics, etc. have helped for sure! I would have been in pain a lot sooner than I am, since my pain only started a year ago. BUT, exercise does not make our scoliosis stop, and I've read and do believe that a curve more that 40 will get worse no matter what. I went from a double 30+ degree in my early 30's to a 50 upper and 60 lower now. Guess that tells you something. I would get surgery over with while I was young, if I had the choice. Good luck in your decision!

abhbarry
07-19-2006, 03:30 PM
Hi Berta and Sweety,

I also believe that yoga, pilates, and exercise do help, but are probably not a cure. I've done a lot of exercise and am pretty committed to it now as surgery approaches. I have heard from numerous people that doing yoga, pilates, swimming, etc. before the surgery will help A LOT in recovery. So, I'm faithfully exercising and so far, it hasn't diminished the pain, but I hope it makes me stronger for recovery. It also helps me feel proactive about my condition.
Berta, you mentioned doing the surgery while you're young instead. I'm 27 with a 55 degree thoracolumbar curve. My surgeon will operate now or later and it is difficult to make the decision with a bunch of "what ifs." I do worry about having kids and putting them through the surgery with me, but I still have that "what if" I don't really need it . . . wishful thinking???

sweetness514
07-19-2006, 05:37 PM
I'm not sure it happens with everybody who has a 40+ curve. Mine stayed the same in 10 years and the lumbar one decreased. I know of women who had 40ish curves and have lived with them, and kept strong with exercises and it has not progressed.

Mobee211
07-19-2006, 06:32 PM
I agree. I have a moderate curve (34 degrees thoracic, 32 degrees lumbar) but I am in pain all day every day. Usually it is a dull, throbbing ache. I can literally feel my spine or something (muscles??) throbbing. But I cannot stand for long periods of time and sitting in a chair is uncomfortable for me as well. I frequently try to arch my back and get rid of the knots/pain. The only time I am NOT in pain is when I am lying down (on stomach or back not side!!). It sucks to be 26 and in pain all the time. If hte pain is seriously affecting your quality of life, then I think you should consider surgery.

crookedspine
07-19-2006, 07:33 PM
ABHBARRY, Your description was exactly how I felt. I can't add much to it. Some days were definitely better than others, but the bad days were getting more and more frequent. I, too, was used to the pain and had a high threshold (of course, when I broke my toe, I had a low threshhold for that!). I waited until last April (I can't believe it was only one year ago), believing that my pain was "normal". At that time, I couldn't get out of bed without my husband helping me, and it just got worse. After pain shots, I was back to "normal", but was much more aware of my pain levels because I was told I had to have surgery. Listen to your body, ask questions of it. GET A SECOND OPINION, and possibly a third. (Mayo Clinic is not too far from you when you think about it. I went to Boston from TX to get my surgery.)

Hang in there! Linda

P.S. I feel pain-free almost all the time now. I had my surgery in November, 05.

Lcoolj88
02-05-2009, 12:06 AM
Hi, my name is Lindsey and I have scoliosis since I was 12 and I am scheduled to go to St. Louis for a appointment for my back after being there last year and not making it my usually three years. I am having complications with pain and what not. I have been having alot of pain in my chest/ sternum area and pressure between my shoulder blades I was wondering what kind of pain you all were experiencing and where?

thanks,

Lindsey

Lcoolj88
02-05-2009, 01:48 PM
What kind of pain and where particular are you having it. I am having sternum pain and was just wondering if anybody else has that and how bad is it.

asccbodypro
02-05-2009, 08:50 PM
I spent the past five years in pain, everyday ,like yourself. Things that once seemed like simple tasks became HUGE tasks that would put me in bed. My breaking point was when we traveled 4 hours away for a Thanksgiving hockey tournament for my son and by the end I couldn't walk unless I had help from my husband or crawling on my hands and knees. I finally said this is it I can't take it anymore. It still took a little time to give my doctor that 100% go ahead. You may spend time going back and forth...I did. However, you will know when you have finally had enough. Good luck

Susan

LynnMarie74
02-06-2009, 06:20 AM
This is not a question with a definitive answer, but I am having trouble determing how much pain is enough to warrant surgery. I don't remember a pain-free day, but of course, that amount of pain varies greatly. When I have pain in my daily life, it becomes almost normal and I'm not sure how to judge my own pain. Sometimes I question whether my pain is enough. . . (this may sound ridiculous). My thoracolumbar curve is at 55 degrees and my surgeon is more interested in the amount of pain I have than the degree. to make the final decision on surgery.

The other day after standing at the grocery store, I had to lay down to get rid of the lower back pain before starting dinner. Is that too much? I don't get that severe pain everyday, but it does happen. Other examples of the more severe pain - I couldn't stand through my wedding photos, I through out my left arm playing darts the other night, etc. But, of course, there are days when my lower back is just a little achy sometimes.

Any advice or personal experiences would be helpful. Thanks a bunch.

I was that way as well. I tried explaining to those who asked about my pain levels, that everyday I have pain but to what degree was different on a day to day basis. Depended on what I did that day, how much sleep I got(hurt worse the longer I was in bed), etc. Are you considering another fusion w/Do Tribus? Or are you literally just asking others opinions? Just wondering I guess.....

abhbarry
02-06-2009, 09:17 AM
Hi Lynn,

I'm not sure if you were asking these questions directed at me. I wrote this post a loooong time ago, but someone else brought it back to life with another question. No, I'm not considering another surgery with Dr. Tribus.

Best,
Anya