Surgery in 40s vs 60s

[LindaRacine]

Hi Susan...

I think it would probably depend on the speed of progression. The vast majority of adults (at least those over 40) have stable thoracic curves. It's almost always the lumbar curve that increases. While lumbar curves are usually a lot more painful than thoracic curves, there aren't the immediate concerns of lung and heart involvement. Large thoracic curves that are progressing are a different concern.

I'm guessing that most people pick the surgeon who says what they want to hear. If you know it's time for surgery, you can either convince the surgeon who is recommending that you wait, or go with the surgeon who wants to do surgery now. I don't think there's any right answer. Most conservative surgeons can probably be convinced to do surgery, if they think you'll have a good outcome. So, I guess I'm saying that the recommendation of if/when to have surgery should probably not be given a lot of weight when one is choosing a surgeon.

Regards,
Linda

[Irina]

Hi Linda,

Can a surgeon predict where I would be in 10-20 years pain wise if I don’t have a surgery now, or there is no way to tell? I have one long large curve, must be thoracolumbar, and I would know the exact measurements in a week…

I think that pain is so subjective. I know that I have very high pain level tolerance (been told by several doctors) and may be something that is nothing for me could be a significant pain for someone else. We just came from NYC, and were walking all days long. My back hurted quite a bit, but I just pushed through the pain and when the pain got too strong, I would tell my husband that it’s time to go back to the hotel. I thought: “It’s is not too bad. Not too many people would be able to walk as much as I do”. On the other hand, some days it’s even painful for me to bend over the sink to brush my teeth, and then I just squat and keep going… Several years ago I could clean our whole house at once in 2-3 hours and now I can only handle half-an-hour at a time. Of course, I can hire a cleaning lady, but that would mean to mentally accept my declining physical abilities, so I just plan my schedule around half-an-hour cleaning increments...

What bothers me the most is the discomfort from rib cage rubbing against my pelvic bone. I feel it when I stand, walk or sit. Walking is becoming uncomfortable because of this. I didn’t have this issue before and it has escalated in the past year. Even when I bend over the sink to brush my teeth, I feel ribs touching and rubbing against my hips and it’s a very odd a disturbing feeling that makes me think – would it cause a lot of pain in a few years?

Oh, that was a long post, but it feels so good to bounce my thought with someone who understands…

[LindaRacine]

Hi Irina...

No one can predict if/when you'll have pain. We see patients relatively often who have huge curves but relatively little pain. If you have pain now, and the pain is no longer episodic (that is, the pain goes away for days, weeks, or months at a time), you could reasonably predict that the pain is not likely to ever get better than it is now. The two most common things that seem to send patients to surgery faster than other things are the ribs on pelvis pain and radicular leg pain. Most people can deal with back pain by reducing function, but leg pain can be particularly disabling.

Regards,
Linda

[susancook]

Hi Susan...

I think it would probably depend on the speed of progression. The vast majority of adults (at least those over 40) have stable thoracic curves. It's almost always the lumbar curve that increases. While lumbar curves are usually a lot more painful than thoracic curves, there aren't the immediate concerns of lung and heart involvement. Large thoracic curves that are progressing are a different concern.

I'm guessing that most people pick the surgeon who says what they want to hear. If you know it's time for surgery, you can either convince the surgeon who is recommending that you wait, or go with the surgeon who wants to do surgery now. I don't think there's any right answer. Most conservative surgeons can probably be convinced to do surgery, if they think you'll have a good outcome. So, I guess I'm saying that the recommendation of if/when to have surgery should probably not be given a lot of weight when one is choosing a surgeon.

Regards,
Linda

Thanks, Linda. I continue to struggle w/ the question of whether or not to have surgery. Some evenings when I am in severe pain, if Dr. Hart dropped by the house, I'd say, start cutting right now. The next morning when I am in less pain, the decision is less clear. It is interesting that you say that the thoracic curve in us older folks generally doesn't progress, and I hope that's true...but it is interesting that just looking in the mirror that I am listing to the right much more recently, that is, my R shoulder is dropping down more than it did previously. I agree w/ you that you pick the surgeon who says what you want to hear, but right now, I'm not sure what I want to hear. The Pain Management MD in the clinic at OHSU says, "I think that you should consider surgery". I do not consider my level of pain to be too limiting. It slows me up, and I cannot stand too long to cook dinner but I am otherwise fairly active. I see Dr. Hart again next Jan 2013 for another set of xrays and a consult, and by then who knows how I will feel? Dr Hart just sent me a chapter written by Dr. Hu on Adult Scoliosis Surgery to read. Thanks again for your information and support. Susan

[Irina]

I am a bit confused with Linda’s statement: “Patients who do not have a lot of pain or disability often have long recoveries and poor outcomes because their motivation is different than someone who has severe pain and loss of function.”

May be they are not happy because their expectations are unrealistic? Why would outcome of the surgery and recovery time be dependent on pre-surgical pain level? If I get well informed about recovery process, risks involved and set reasonable expectations, why would my outcome be less favorable than someone who is in severe pain?

[LindaRacine]

I am a bit confused with Linda’s statement: “Patients who do not have a lot of pain or disability often have long recoveries and poor outcomes because their motivation is different than someone who has severe pain and loss of function.”

May be they are not happy because their expectations are unrealistic? Why would outcome of the surgery and recovery time be dependent on pre-surgical pain level? If I get well informed about recovery process, risks involved and set reasonable expectations, why would my outcome be less favorable than someone who is in severe pain?

Hi Irina...

I think most of it is expectations. It's one thing to hear a surgeon say that you might be worse after surgery, and quite another to think it will happen to you. People who go into surgery with a lot of pain are usually happy after surgery, when their pain level is lessened. People who go into surgery with relatively little pain may find themselves very unhappy when they realize they have long-term pain. These surgeries are not benign. Even if you don't have back or leg pain after surgery, you might have one of many potential "incidental" issues like minor nerve damage, trochanteric bursitis, lymphedema, a slight lean forward, or to one side, degeneration above or below the fusion, the loss of flexibility, etc. We all think those are a small price to pay, but it can be a different story to actually live with them every day. I am not trying to scare anyone away from their decision to have surgery, but I think talking about these things helps to manage expectations.

Regards,
Linda

[jrnyc]

to me, it seems pretty clear that if someone is not in pain before surgery,
pain after surgery can be expected to be hard to accept and tolerate...especially if the
pain is ongoing after reasonable post surgery healing...
it can lead to regret over having had the surgery...as Linda said, people in severe pain before
surgery may be more accepting of pain after healing if/when tht pain is still less than the pain
they had before...
of course...for some of us...we are reducing functioning, and reducing, and reducing...until
there is a great deal of limitation on what we can do....literally....
when that point comes....surgery can become a daily consideration....and even then, a tough
decision, depending partly on one's age...at least, that is how i see it....

jess

[Irina]

Ok, then why do some people go ahead with a surgery mainly because of progression? If one is not in a lot of pain, but the curve keeps progressing, what's the future holds? Should you wait until the curve reaches 125 degress or more? Btw, what is the max degree possible and how does it feel to have something like that? Would it hurt a lot, put you in a wheel chair?

[LindaRacine]

I've seen patients with curves up to about 150-160, and have seen photos of much worse. Actually, I once saw a man whose neck was so curved that his head was upside down, sitting on his shoulder. I'm guessing that his curve must have been well over 200 degrees. I have no idea if surgery was even an option for him. Hard to know what it feels like, but I've definitely seen a few patients with 150 degree curves that are not painful. I think those are exceptions for the most part however. Irina... there are no rules for when adults should have surgery, so don't try to make your decision based on other people. We're all different, and no one else can really tell what another person's motivations might be.

--Linda

[titaniumed]

Irina

I was a candidate in 1975 and waited 34 years. I’m a skier....

If I could roll back the hands of time and do it over again, I would have my surgery at age 40. The pain I suffered through from age 41 through 49 was not worth it. When you cannot sit down due to major sciatica, and have to buy an RV for transport, that’s a signal. My pain was out of control at the end.

It is scary....as most things in life are when you don’t know what to expect. If you have never been under, or a first timer for surgery it can be very freaky. After my scoli surgeries, I walked in to my shoulder re-build and cholecystectomy without any fear at all. My laser lithotripsy scared me the most. Plumbing......its tricky stuff for us guys.

Like Linda has mentioned, there are people with some incredibly huge curves out there. They do have the ability to repair 180 degree paperclips. Amazing stuff......I saw this kid on the research channel with one and after they fixed him, he commented, “I’m in heaven”. That’s all he could say.

Be sure to let us know what your Cobb’s are when you find out.
Ed

[Pooka1]

Irina... there are no rules for when adults should have surgery

Yes that that makes it very different from kids. For my first kid, I was told she needed surgery and that surgeon was handing her off to another surgeon to do it. Period. Boom. Second kid, same... you need surgery and we need to schedule it. Period. Boom. Maybe the legality of the parent/guardian relationship kicks in and the surgeon becomes a player making the bar is set very high for following best medical advice.

In contrast, many if not most adults seem to always be in a grey area. Seems so frustrating. I guess if you get to be an adult, your curve didn't kill you yet so there is usually some room. My kids would not have gotten that far.

[Irina]

My kids would not have gotten that far.

Oh, I wish I had this option as a kid. I am originally from Ukraine and scoliosis surgery was not an option there and has never been offered.

[Pooka1]

Oh, I wish I had this option as a kid. I am originally from Ukraine and scoliosis surgery was not an option there and has never been offered.

Yes but you are still alive. I am not sure my kids would be if they weren't fused.

[jrnyc]

i am trying to imagine a 150 degree curve that doesn't hurt....
i cannot wrap my head around it...
IF it were upper, it sounds like it would interfere with heart and lung function...
IF it were lower, it sounds like it would prevent walking and hurt like hell
my 70 degree lumbar curve hurts worse the bigger it gets, and it sends the pain
elsewhere in lower body the bigger it gets...compared to that, my upper 42 degree curve
is almost nothing....just causes muscle spasms....

double 70.....wow!!!! i am not able to imagine it...
maybe it is that i don't want to...

jess

[Karen Ocker]

Some thoughts

I did not have very much pain requiring more than Aleve however I would wake up at night with a throbbing lumbar pain requiring a little pillow under one buttock. That would give relief. My back got tired /achy after being on my feet all day. I did all I could to stay fit.

Several things worried me based on my medical background:
My heart was rotated from the scoliosis. Whenever I had an EKG-because the technicians placed the EKG leads in the "normal" places- my EKG readings were alarming. For example "evidence of infarction" or "conduction defects". Once I suggested the technicians pay close attention to where my heart really was my readings were normal.

My stomach lay on its side (from the thoracic curve) allowing acid and bile to scar my lower esphagus - this caused a stricture requiring dilitation.

I was getting more and more easily winded- I lost 30% lung capacity (never smoked). That was the scariest.

A couple of co-workers(physicians) mentioned my worsened appearance-which of course meant progression.

So if pain were the only criteria to go by I could have lasted a little longer. Wished I had the surgery done even sooner.

Reasonable speaking, there is no way large curves, anywhere in the spine, do not impact internal organs in some way. Even making a diagnosis by abdominal ultrasound, in my case, was difficult. The radiologist could not visualize my pancreas well because it was hiding behind a deformed rib- same problem with my spleen and gallbladder.

It is magical thinking to believe a progressing curve will stop or stabilize on its own and that the resulting pain will somehow get better. Life is too short to suffer for no reason if the risk/benefit is favorable for surgery.
I still have no pain 10 years after revision. I go to the gym and do resistance training as well as aerobic exercise. I just turned 70.