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Thread: When do you have enough pain for surgery?

  1. #1
    Join Date
    Jul 2006
    Location
    Madison, Wisconsin
    Posts
    311

    When do you have enough pain for surgery?

    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.
    "You must be the change you want to see in the world."

    Previously 55 degree thoracolumbar curve
    Surgery June 5, 2007 - Dr. Clifford Tribus, University of Wisconsin Hospital
    19 degrees post-op!

    http://abhbarry.blogspot.com

  2. #2
    Join Date
    Jul 2006
    Location
    Buffalo, NY
    Posts
    34
    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.

    Jen
    24/NY
    Harrington rod placement & fusions
    11/2/94
    60T, 35L

  3. #3
    Join Date
    Sep 2003
    Location
    Fernley, Nevada
    Posts
    352
    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
    SandyC

  4. #4
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,293

    pain as indication for surgery???

    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).

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

    I read that triple curves compress the chest sooner that double or single curves ----obviously.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  5. #5
    Join Date
    Jan 2006
    Location
    near Philadelphia
    Posts
    1,260
    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

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,102
    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

  7. #7
    Join Date
    Jan 2006
    Location
    new york
    Posts
    212
    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.
    Jenn
    37 y/o female
    60 degree lumbar
    45 degree thoracic
    1st time anterior/posterior surgery May 8th and 10th 2006
    T 5 to S 1
    NYC

  8. #8
    Join Date
    Sep 2005
    Location
    Sacramento,Calif.
    Posts
    420
    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.

  9. #9
    Join Date
    Apr 2006
    Posts
    227

    Abhberry - pain or surgery?

    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'

  10. #10
    Join Date
    May 2006
    Location
    Bucks County, Pa
    Posts
    274
    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.

  11. #11
    Join Date
    Jul 2006
    Location
    Croatia,Europe
    Posts
    20
    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
    26 year old with 55 degrees thoracic curve

  12. #12
    Join Date
    Jul 2006
    Location
    Madison, Wisconsin
    Posts
    311

    pain

    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.
    "You must be the change you want to see in the world."

    Previously 55 degree thoracolumbar curve
    Surgery June 5, 2007 - Dr. Clifford Tribus, University of Wisconsin Hospital
    19 degrees post-op!

    http://abhbarry.blogspot.com

  13. #13
    Join Date
    Dec 2005
    Location
    new jersey
    Posts
    850
    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???!
    60/60 curv 85 kyphosis/95 thorocolumbar curve..........aug 1st surg...
    http://lynnebackattack.blogspot.com

  14. #14
    Join Date
    Jul 2006
    Location
    British Columbia, Canada
    Posts
    35
    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. 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

  15. #15
    Join Date
    Jun 2006
    Location
    Kona, Hawaii
    Posts
    101
    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.
    Berta in Hawaii

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