Surgery in 40s vs 60s

[Irina]

I've noticed that a lot of people have their surgeries in 60s and wonder if they were offered a surgery when they were yonger, but for some reason decided to wait. If this sounds like you, can you please share why you decided to wait until later in life? Was if fear, economic reasons etc? Do you regret not having it done earlier?

I am 44 and scared of this surgery to death… I know that a lot of people will say it’s better to do it sooner than later, but still want to understand why so many decide to wait until they are in their 50s – 60s to have it done

Irina.

[Doreen1]

Hi Irina,

I, too, am 44 and just want to share that because my scoli deteriorated at such a fast clip (lost 4 inches of height last year, curves progressing 6 degrees every year) that I couldn't afford to wait. In my case, there was no need to wait for surgery.

Don't let fear paralyze you. Some things to consider are how severe are your curve(s), how aggressive are your curves and how much pain are you in?

Curious to see others respond to your questions.

Warmly,
Doreen

[Irina]

I don't know my cob angle, but my curve is huge. Last time it was measured in my teens and I was told that it won't progress, but it does. I can see my back, rib hump and an ugly hip sticking out. My ribs are sitting on my pelvis and it's very uncomfortable. I have some lower back pain, but it's tolerable and doesn't affect me much. Sometimes I wish I had more pain and it would give me a kick to do something... I worry all the time of where I would be in 10-20 years if the curve keeps progressing. I lost 3 inches since my teen years - part of it could be a normal aging, but 44 is not that old to lose 3 inches, right?

I finally scheduled an appointment with an orthopedic surgeon and plan to get several other opinions. Just scheduling these appointments is so frightening... I remember Linda saying somewhere that an average age of patients coming to UCSF is about 60 years and wonder why? Why did they wait for so long?

[JenniferG]

Hi Irina,

I was just short of 58 when I had mine. I was offered surgery at about 13 and refused it. My parents didn't object to my decision and allowed me to have my way, especially when our GP confirmed it as a fairly barbaric surgery at that time. We adopted the "wait and see" approach which, for me, meant forget I ever had Scoliosis. I had no pain until my late 40s and it started gradually, increasing through my 50s. I successfully ignored my scoliosis and never gave it a thought until then. But gradually I started to notice my deteriorating shape and the constant low back pain when standing and it was getting harder to ignore.

When first told I needed surgery within 12 months, I freaked out. I'd never had any kind of surgery before, was nervous of anything "medical" and had avoided doctors as much as possible. But I knew I needed surgery if I was to have any kind of life at all. My curve was progressing. Where would it end up? So I scheduled surgery for a date 6 weeks down the track then cancelled it. I needed more time to get my head around it. I found this forum and talking about it, reading about it, asking questions and having them answered by people who'd actually had the surgery, all helped enormously. As the question marks in my head diminished, I started to think, I can do this "thing." So I rescheduled the surgery and set about getting as fit and healthy as I could, in other words, take some control for myself, do what I could for myself, not leave it to fate entirely. As I got fitter, I got braver. By the time my surgery date arrived, I was barely even nervous. I just wanted it over and done with. I was sick of thinking about it and wanted to get on the road to recovery. That's how I thought about it, not so much the surgery, but the recovery, getting better, getting back to a normal, better life. Surgery is just one day. After that, you just work your way back to normality, only a better normality than before. Getting to that surgery date is the hard part, in my opinion.

You can do this. Necessity will tell you that. But you can make it easier on yourself if you get all your questions answered, can talk about it to those you care about, organise whatever help you need, and as each box is ticked, you will feel braver and more positive about it. If your pain allows, get as fit as you can, it was the best thing I did for myself. It helps in every way, most importantly, makes you feel positive about the surgery, as opposed to negative. If getting fit isn't possible, you can still eat healthily, and get your weight to a healthy place. It will give you a sense of control and confidence in yourself. All these things help.

And before you know it, your surgery will be over and you'll be heading towards a better life and a better future. Good luck!

[golfnut]

My story is similar to Jennifer's. I found out I had scoliosis in high school and it was monitored for several years. It was determined that it probably wouldn't get worse, so I tried to totally forget the word "scoliosis". As I reached my 50's, standing for any length of time caused me discomfort, but I could do most anything else I wanted with little or no pain. I think I started looking more "crooked" in my 50's and my rib hump became more predominant causing me to avoid tight fitting clothing and to be self conscious when walking in front of people or bending over to play golf. I was 60 when I had surgery and can't say that I'm sorry I didn't have the surgery sooner, because I was not in pain before surgery and have had a smooth recovery. Fortunately, I was able to be in good physical shape for surgery, but many on the forum have said that pain prevented them from being able to exercise. I would think that if one is in pain and has a curve that is progressing that he/she will have an easier time with recovery and get a better correction with the advantage of being younger.

[debbei]

I was scared to death as the next guy, but I pushed myself to go through with the surgery. I was 46 and I'm glad I did it. I think I had a pretty good recovery, compared to others that I've seen here on this forum. In my case, I knew that if I waited I would continue to progress and I was already 66 degrees on each curve.

[loves to skate]

I don't know my cob angle, but my curve is huge. Last time it was measured in my teens and I was told that it won't progress, but it does. I can see my back, rib hump and an ugly hip sticking out. My ribs are sitting on my pelvis and it's very uncomfortable. I have some lower back pain, but it's tolerable and doesn't affect me much. Sometimes I wish I had more pain and it would give me a kick to do something... I worry all the time of where I would be in 10-20 years if the curve keeps progressing. I lost 3 inches since my teen years - part of it could be a normal aging, but 44 is not that old to lose 3 inches, right?

I finally scheduled an appointment with an orthopedic surgeon and plan to get several other opinions. Just scheduling these appointments is so frightening... I remember Linda saying somewhere that an average age of patients coming to UCSF is about 60 years and wonder why? Why did they wait for so long?

A lot of those 60 year olds more than likely have the denovo type scoliosis that develops from degenerative disc disease. I was never diagnosed earlier or I would certainly have had surgery at an earlier age. When you are older, it is much harder to get any correction, much less a good correction because of flexibility and bone density.
Sally

[Irina]

I am so grateful to all of you for sharing your stories. It really helps to hear words of encouragement from someone who’s done it. Thank you!

[susancook]

Irina: I am another who is "late onset degenerative scoliosis", that is, mine wasn't discovered until I was 65 [this last year!]. Scoliosis comes like ice cream in all flavors: the very young, the teenagers, those young adults and then all ages of adults to the very elderly.

My suggestion is: get lots of information and talk to others that have had the surgery. This forum is a great resource for information. I don't know where you live or where you plan to have your surgery, but have a surgeon that does a lot of adults and someone that you feel confident with. Get a couple of opinions. I would recommend one of the major centers that does spine surgeries.

Why do people have surgery? That varies with a couple of factors including age, disability, curve, and pain level. There is no "formula", each person is evaluated individually. That is why this blog sometimes gets confusing because older folks like me can have a lot of pain with a 36 degree curve and younger [like a 45 year old] adult with a 60 * curve has very little pain. Scoliosis is not an equal opportunity condition.

And, we are all afraid, but we talk about it. You are not alone!!!!!!

Good luck. Keep in touch. Susan

[Confusedmom]

Irina,

You've asked a really good question, and this is a very interesting thread.

I had surgery a few months ago at age 40 even though I was not in much pain. I had been diagnosed when I was 11, wore a brace in middle school, got good correction and never dreamed I would have surgery. I got my curve checked a couple of times, when I was 22 it was 33 degrees. When I was 30 it was 55 degrees. That was the first time someone proposed surgery for me. I wanted to have my kids first and wait until they were old enough to have the surgery. So by this spring my curve was 85 degrees and I was looking pretty deformed. I had a big rib hump on the right and perpetual muffin top on that side. This forum and my local surgeon led me to a doctor I trusted. I still was unconvinced because of all the risks. However, I found out I have osteopenia, so I didn't think I should wait too long. Plus, my curve was increasing rapidly, so Dr. Lenke advised against waiting. So far I am generally pleased with the surgery, though I am still recovering. I definitely look a lot better. My biggest question at this point regarding having surgery at age 40 is -- how will my back hold up over time? Will I need additional surgeries? And will the fusion put undue stress on my hips, neck and knees as I age? In the end I had to make the leap of faith that my overall health would be better with the fusion than without it. Good luck with your decision! You are thinking things through well.

Best,
Evelyn

[Irina]

One more question. When you talked with doctors, did they tell you ‘yes, you need a surgery’ or at least gave a clear indication that a surgery is advisable? Or would they just lay down all the facts and leave the decision completely up to you? It would be easier for me to hear the doctor say ‘yes, you need it' or 'no, you don’t need it’ instead of being lost somewhere in the woods.

Back in 2010 I had X-rays taken, but then chickened out and didn’t go to any surgeon. Now these x-rays would come handy because they can measure the progression over two years.

[JenniferG]

My surgeon told me my scoliosis would never kill me. (That startled me because I had never thought of it as something that might.) He then gave me all the facts. I asked his opinion, should I have the surgery? He said if I was his wife, he'd say yes. I asked how soon. He said preferably within 12 months. I had the surgery 9 months later, having cancelled an earlier date.

[Confusedmom]

Six surgeons told me I should "consider" surgery or that the "recommended" surgery in the next couple of years. One told me to wait a few years until my curve got in the 70s. I signed up when it hit the 80s.

[LindaRacine]

Hi...

Every surgeon has their own philosophy. If you went to 5 surgeons, I suspect you'd get 5 different opinions ranging from "you're not ready for surgery" to "you should have surgery now". They're all just opinions, and none of them can tell you what your outcome will be. My advice is to choose surgery when you know that the risk/reward ratio is right. 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. I don't know about everyone else, but I really knew that it was time for me to have surgery. I had leg pain that had escalated to a point where it severely impacted my function. Everything had to be planned so that I never had to be upright for more than 4-5 minutes at a time.

Regards,
Linda

[susancook]

Hi...

Every surgeon has their own philosophy. If you went to 5 surgeons, I suspect you'd get 5 different opinions ranging from "you're not ready for surgery" to "you should have surgery now". They're all just opinions, and none of them can tell you what your outcome will be. My advice is to choose surgery when you know that the risk/reward ratio is right. 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. I don't know about everyone else, but I really knew that it was time for me to have surgery. I had leg pain that had escalated to a point where it severely impacted my function. Everything had to be planned so that I never had to be upright for more than 4-5 minutes at a time.

Regards,
Linda

Linda: What if you're in just moderate pain but the surgeon says that your curve is progressing and he is concerned and recommends surgery. That seems to me to be problematic and I worry if I get into that zone of having to make a decision. I agree that the decision for me would be apparent if my quality of life was compromised and I had to limit my activities because of pain. So, you go to another surgeon and that one says, "you don't need surgery now, you can wait". Do you pick the one that you like best? Go to another surgeon? Susan