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View Full Version : Surgery or No Surgery?... & therein lies the problem



VincySweety
01-16-2007, 10:26 AM
Hey everyone,

Well as you all know, I've seen a specialist about my scoliosis before, and was told that I have severe scoliosis and will need surgery. I had an MRI done and tentatively booked June 18, 2007 as the date for surgery.

In November I got a second opinion. This doctor gave me a completely different story... he said that my curves are in the gray area, because above 50 degrees will get worse and need surgery, and below 30 should stay the same. My curves are 48T & 40L according to my last x-ray done in June 2006. But he suggested that I do nothing for now and come back to see him in a year. Well when he said that I was a little confused, so I told him that I had seen another doctor before him and I told him what she said. It turns out that he knows her, and he said that it's not the first time another doctor has had a different opinion from him, but some surgeons are more aggressive than others, and he's not a very aggresssive surgeon, because the curve has to prove to him that it needs surgery. Also he said that the first doctor I saw sees alot of younger patients (which is true) and that she may be using the criteria for me that she uses to decide if younger patients need surgery.

So needless to say, I am now completely and utterly confused smiles-square.gif ... because by the time he wants me to come to see him again, I would've already gotten surgery from the other doctor if I decide to go through with it. Arg... now I dunno wat to do... I just want to do what's best... I dunno if it would be better in the long run for me to have surgery when I'm younger... but then again I dunno if I'll need surgery or not in the long run... or if my scoliosis will end up causing other problems for me... if only I had a crystal ball. This surgery is no small deal either... it's a HUGE deal... oh boy... I really dunno what to do... what do you guys think? I can definitely use the advice.

I have an appointment to see my original specialist in February... so I'm keeping that appointment and telling her what this doctor says... see what she thinks... I dunno if that'll help though... might just make me even more confused.

Please help. Any thoughts would be greatly appreciated.

gayle
01-16-2007, 01:17 PM
well is it possible to see a third dr to see if he says one or the other?

final_spinal
01-16-2007, 08:33 PM
I agree with Gayle, get a third opinion, a fourth opinion, do research until you can't see straight. You will know what the best thing is to do when it feels right and you have no more questioning. I was twelve when I had a Harrington-Luque procedure from T-5 to L-4 and my mom was at the medical library every night and calling doctors around the country until she felt right about what to do about my curve.

Don't stop asking questions until you feel right about it. This is permanent. Good luck!

gayle
01-17-2007, 08:55 AM
when you have 2 or more spine specialists telling you yes your curve is bad you need surgery then you will know basically that is something to strongly consider .i went to 2 orthopedic surgeons and a couple of other drs and they all had the same response about how bad my curves were.after i heard all of those answers being consistent,knowing my curves being high,i knew that surgery was the only option.but make sure you feel right about it,if you dont think a certain dr doesnt seem he is telling you everything or isnt specific why you should have surgery ,just go to someone else.

joeb-z
01-17-2007, 10:44 AM
You need to know the rate of progression in your curves. Also not all xrays are equal or accurate for comparision. This puts the situation in the realm of science rather than opinion. Older people with curves can sometimes have relatively rapid increases in curvature that dictates surgery below 50 degrees. My wife was close to 3 degrees per year and that is not a good trend, even at 46 degrees.

Suzy
01-17-2007, 11:22 AM
I agree with joeb-z. My curve was at 49* when I had surgery last Feb at age 43. I was progressing almost 4* per year! What I think your Dr. said about curves under 30* not progressing vs curves over 50* progressing doesn't mean you will stop getting worse if you are in those numbered areas. From what I understand some curves are progressive and others are not. Plus, I remember my Dr. telling me something about once you get over a 50* curve gravity can be a factor in progression. Some have very rapid curve progression and others creep along very slowly, if at all. The progression rate of your curve plus how much pain you are in are in are good factors to help you make the right decision when surgery would be best. Find a Dr. who makes you feel they are the right one for you. You don't have to stop at two opinions.

sparks42
01-17-2007, 05:50 PM
I think......

if you're scoliosis is staying the same and not getting worse....leave it be.

BUT

if it is progressing AT ALL you should have the operation.

Me for example....
my curve was 18 degrees....they said let's watch it
then it was 26 degrees.....they said let's watch it
then it was 38 degrees.....they said let's watch it
then it was 42 degrees....they said it's in the grey area....let's watch it
then it was 53 degress....they said hey! that's bad...you're having sugery

So I'm like....okay....and we were waiting for.....what?????

So if it's getting worse.....at all....as long as you're done growing (they doctors can tell if you're done or not) get the surgery.

VincySweety
01-21-2007, 07:10 AM
Thanks for all your words of advice! :) I have an appoinment with my surgeon in Febrary, so I'll let you all know how it goes and what my decision is!

BrianB
01-22-2007, 07:10 PM
I am pretty much like you. I have a 50 degree and a 43 degree curve. I saw one doctor who said to have surgery. I pretty much was convinced I would need it, but then I saw another doctor who didn't think I should have it. His thoughts were that it was in the gray area and that, comparing them to my x-rays from 10 years ago, he was not able to unquestionably prove that my curves had actually progressed. I don't know how old you are, but I'm 31 (in 2 days, anyway) and I work out a lot to stay in good shape. My doctor said that, as long as I stay in good shape, that I would not have any longer a recovery at 40 than now. Where recovery starts to change is around 50 years old. So you really need to look at progression, not just the measurement of the curves. As my doctor said, this is MAJOR surgery. You need to be certain that the risks of surgery outweigh the risks of waiting a few years. In my case, there is more risk with surgery than waiting 5-10 years. If it continues to get worse, then at least I'll know and be more confident with my decision. Hope this helps!

Kari
01-22-2007, 09:04 PM
Well, I am one of those patients that was in the watch and wait zone for 30 years. This fall I discovered that my curve had progressed to 57 degrees. It has been changing about 1 degree a year.

For the last 2.5 months I have been searching for a surgeon. I have read several books and interviewed 6+surgeons. All have different opinions! I was also told that I could continue to watch and wait for another 6-12 months.

Best advise take your time, read as much as you can, and find a surgeon you can trust.

Kari

age 39
57 thorasic
surgery planned spring 2007

JamieAnn
01-29-2007, 01:25 PM
Brian,

I'm confused what you mean by they couldn't prove the curve got worse? What was the degree 10 years ago?

Just curious!

Jamie

VincySweety
01-29-2007, 05:22 PM
The second surgeon could not measure my second set of x-rays because they were on a CD that did not have the software for him to measure it himself, and I guess he wanted to see for himself rather than just read the x-ray report.

I don't have x-rays from 10 years ago. I only found out that I had scoliosis when I was 16 and I got the x-rays in the caribbean where I used to live, and they could not measure the degrees of my curves there. The only time I got a proper measurment was when I was 17 and had moved to Canada. The curves they are comparing are one set from when I was 17 and the other I had done when I was 18. I'm now 19 and my last x-rays were taken about 8 months ago and I haven't taken any more yet.

I suppose I could try to get a hold of the first set of x-rays that I had taken in the caribbean and get them measured. It may be difficult to get them though, and my appointment with the surgeon who offered surgery is on February 15th, so I'm not sure if I'll have enough time to do that.

BrianB
01-29-2007, 08:42 PM
Hi Jamie,

It has to do with potential error in measurement. Both doctors have told me (and most here agree) that there is a certain margin of error when it comes to measuring curves. I think up to about 3 degrees. I think that, when measuring my curves from 10 years ago (which they said the top was around 43) to now (which is close to 50), when you take into account margin of error, it could be as little as 1 degree of change. To them, the X-Rays looked almost identical and they did not see any visible signs of major change. So they thought it best to watch it for a while until it can be proven that they really are progressing and require surgery. Does that make sense?

My back has been bothering me a bit more lately, but I can't tell if it's mental or if it's really the curves...

JamieAnn
01-29-2007, 08:46 PM
Brian,

Yes that makes sense. I have a 13 degree change in 9 years, so I was thinking maybe my case would be similar. We will see - I have a follow-up appointment on Thursday.

I have the same pain issue - I can't tell if it's because I'm mentally VERY aware of my curves now or legitimate pain.

:rolleyes:

BrianB
01-29-2007, 10:44 PM
Hi Jaime,

Good luck with your follow up on Thursday. Hope it goes well. Seems like we're fairly similar in our cases. Feel free to PM me if you ever have any other questions- and would love to hear how Thurs. goes for you!

Lesly
01-30-2007, 10:37 AM
I think it is a very hard decision to make when a doctor says that you are in the "gray area." My decision to have surgery was solely based on the fact that I was in pain. Every day of my life. And it was starting to prevent me from doing things that I wanted to do.
I had a thoracic curve only, lumbar was pretty much straight. When I was 13, my curve was 12 degrees. Then, during college, I think it was somewhere in the 20's. Last January, it was 37 and this past September it was 45 degrees. I know that what Brian said about error in measuring the curve, but if there was any chance of my curve progressing 8 degrees in 8 months, I wasn't going to let it get any worse!!
Bottom line, is that usually when a curve is in the 40's they don't push surgery. My surgeon (Dr. Boachie) told me flat out that if I didn't do anything now, it would get significantly worse. I couldn't think of having children and then doing this, so I went ahead and did it. Wow...to think it was 4 weeks ago tomorrow is crazy!
I am very glad that I made the decision, because the past few years, going back and forth, and the anticipation of surgery and recovery, for me was far worse than the surgery itself and what I am going through now. I would, without a doubt, do it all over again if I had to.
I know that the day is coming that I'll be fully recovered and I won't live with pain anymore, and that is the best thought in the world!
You really have to make your decision based on how you feel, and your quality of life. You can't always listen only to the doctors, because I was told when I was a teenager that my curve wouldn't get worse. And obviously that was not true!
Best of luck with your decision....and keep us posted!
Lesly