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lrmb
09-28-2004, 10:41 PM
Hi everyone,

So, after a long, long wait for a second opinion, which I was sure would advise the surgery, Dr number 2 told me in no uncertain terms that he would not recommend it. !! I was completely in shock.

My curves are 46/30 (remembering the margin for error), from 40/30 ten years ago. (I thought surgery would surely be recommended because of that progression.) The second opinion doctor told me that until the curve got to 50 degrees progression was not a certainty. The other doctor I had seen had told me that anything over 40 would get worse, especially with a history of progression.

What numbers have you guys heard with regard to progression? Now I am just confused. My second opinion was the best doctor recommended by an MD I really trust. I am going to get a third opinion next week in a different city... but now I kind of feel like I'm just collecting opinions...

It would be really helpful to know what other people have heard about "cut off lines" for surgery in cases where progression, not pain, would be the reason.

Thanks in advance. I don't know what I'd do without this forum! ~Laura

LindaRacine
09-29-2004, 11:01 AM
Hi Laura....

In recent years, I've heard the 50 degree figure far more than 40 degrees. Even if your curves are likely to progress, it's unlikely that they'll progress rapidly once you've reached skeletal maturity. So, if your pain isn't significant, I don't see any harm in waiting 5 more years to see if progression will continue.

Regards,
Linda

spincon58
09-29-2004, 12:39 PM
Hi,

Your scoli curve progression rate should also corespond with your increase pain rate....If together they are getting worse, than surgery can be an option for you..My spine curved from 40 to 45 to 53 in 5 years, my pain was bad, unable toi sleep or stand for 15 minutes at a time...so I was positive I was only going to get worse...so I had surgery this passed June....Don't rush into anything, it's a very serious surgery .

LindaRacine
09-29-2004, 12:56 PM
Hi Connie...

Just to be clear, many people whose curves increase, don't have increased pain. Also, many people have increased pain without having a corresponding increase in curve size. It's my understanding that significant pain AND/OR significant increase in Cobb angle are both acceptable reasons to consider surgery.

Regards,
Linda

spincon58
09-29-2004, 03:49 PM
Linda,

So if someones curve is under 40 but has extreme pain..R they a canidate for surgery.....or if someone has 75 degree and no pain....should they have surgery??? I do believe what U say, but a sugeon will not operate unless it's the last resort....but on the other hand it's the persons choice in the end

LindaRacine
09-29-2004, 03:57 PM
Hi Connie...

No, most surgeons won't operate on curves < 40 degrees. But, a 46 degree curve on someone with a lot of pain is usually considered operable, even if no progression has been shown. And, there are plenty of people with huge curves who haven't had surgery because they don't have pain.

My point was that while pain and progression are the two big reasons for adults to consider surgery, they don't always go hand in hand. :-)

Regards,
Linda

lrmb
09-30-2004, 05:47 PM
Hi there,

Thanks so much, Connie and Linda, for the replies. They really gave me confidence in thinking about my options at this point. I saw my third opinion today, and he concurred with the second opinion that I should wait a few years to monitor further progression before undertaking surgery. While there is still some thinking to be done--in so far as both doctors think I will eventually need the surgery, and that their time scale puts surgery right in the middle of my most likely child-bearing years--I was glad to hear two separate opinions in agreement.

On the subject of child-bearing, does anybody have strong opinions on the question of whether to have the surgery before or after child-bearing? I know this is a difficult question, but it would be helpful to hear any views on this, from people who have had children after surgery, or from those who had children then went through surgery.

Thanks, as usual, for any info or insights. ~Laura

LindaRacine
09-30-2004, 05:56 PM
Hi Laura...

There's no perfect time to have kids. If you have surgery before you have the kids, you may find it difficult to carry the kids as they get heavier, and especially to get them into car seats. If you have kids, then surgery, you'll almost certainly be limited to lifting the kids.

Based on the people I know who have been through surgery, I'd recommend waiting to have surgery until your kids are at an age where you don't have to lift or carry them any more.

Whatever you decide, I'd encourage you to get x-rays before and after pregnancy to see if your curve is increasing.

Regards,
Linda

nora
10-09-2004, 09:04 PM
Hi Laura,
Ironically, the year I was planning to start preparing for the surgery decision, I got pregnant with my first child. In retrospect, I'm sure it was a subconscious intentional act on my part. I mean, by 32 I certainly knew how to avoid pregnancy! Once I began motherhood, I decided to wait altogether. Now I'm 40 and have 2 beautiful boys and I have no regrets about waiting. Pregnancy was not too difficult on my back. Carrying babies caused a lot of pain and I'm sure the arthritis in my lower spine is worse as a result of that. But I am fine and do everything I need and want to do.

I don't have anything definitive to tell you but I thought it may be helpful to get a perspectve of someone who waited. I wasn't ready to make that decision 8 years ago and its a good thing I didn't wait to start a family because I'm still not ready! I don't know your age but I guess I'd keep in mind that our timeframe for bearing children is shorter than our timeframe for having surgery.

Good Luck, Nora

lrmb
10-10-2004, 07:02 PM
Thanks so much Nora for your words about your own situation. It's good to hear something positive from somebody who waited. I appreciate the insights, especially about the pain level while you were carrying the children. I am expecting this myself when the time comes, but it's great to hear your positiveness and that you're glad you were cautious. Thanks again. I appreciate it! Laura

letty
10-12-2004, 11:45 AM
Had scoliosis since 12. Had normal pregnancies at 24, 25 and 26 years of age. Now at 57, still thinking whether to have the surgery or wait some more. Except for the big hump, I only have minimal discomfort and I am very active (walking, full time job and grandkids). The only thing that the doctor is concerned is that the 67 degrees curve would go up to 100. What if I am 70 years old by then and not a good candidate for surgery anymore. I am praying for a wise decision. In the meantime, life is good and I am enjoying every minute of it. Take care.

Letty

LindaRacine
10-12-2004, 11:57 AM
Hi Letty...

I think you have a difficult decision. What sort of progression has been documented in the last 10-20 years? MOST large curves progress 1 to 2 degrees a year. If that holds true in your case, you'd have an 80-93 degree curve by the age of 70. At 93 degrees, you may start getting into difficulty in terms of pulmonary function. But, if you're progressing at about 1 degree a year, you have a good chance of leading a fairly normal life.

I can tell you that the "older" people I know who have relatively little pain are the ones who seem to be the most unhappy about their outcomes.

Regards,
Linda

letty
10-13-2004, 11:27 AM
Linda,

I think the progression is more like 2 degrees/year. The reason I am having second thoughts is that right now, I am enjoying life to the fullest with very minimal discomfort. When I think about the limitations that might happen or the pain that might increase, I chicken out big time. Pray for me.

Letty

Jenny Spencer
11-09-2004, 05:29 PM
Letty,

I can totally understand your dilemma.

I am 52 and finding it hard to make a decision re surgery. I have a thoracic lumbar curve of 70 degrees and know that this will degenerate 1/2 degrees a year.But I'm scared to replace a set of problems I can cope with,with the unknown.

Best wishes,

Jenny

HGD24
11-11-2004, 11:57 AM
I have to say that as time gets closer to my scheduled surgery date in January, I'm a bit more worried about my decision to undergo surgery right now and am considering putting it off and getting some more opinions from other doctors.

I'm 29, very active with very little, if any pain. My curves are both at 75 degrees (top and bottom of spine) and I am shrinking already, which shows that my scoliosis is progressing. I have a very short torso, so there isn't much room for more shrinking! My doctor also believes from my stretch x-rays that my top curve is beginning to naturally fuse itself. I already have asthma and will most likely suffer more pulmonary and cardio issues as I get older...but again, am not really suffering yet.

I've yet to have children and my thought is that it's best to have this surgery while I'm young and can recover more quickly and don't have kids running around the house. But then I worry that I may end up with mobility restrictions as a result of the surgery....and will regret having the surgery at such a young age with so much ahead of me. I guess I'm second guessing my decision to have surgery now.

What do you all think???? I need to hear from people who've gone through this and know what it's like....I know no one, except for those on this board, who has elected to undergo such a major surgery.....

Danite
11-11-2004, 12:29 PM
Hi everyone,

I have at least three curves that since surgery in 54 have progressively became worse, just recently after fifty years of reasonably pain free life. I have had numerous problems, including breathing and increased pain, but presently no surgery is being scheduled for this guy. Again it is a serious problem and is personal for that person, if they want or need surgery, I too have heard that surgery is usually only considered and should be by the individual with scoliosis if it reaches that 50 percent mark.
Two of my curves are beyound the 60 mark and one is at 30, I have no metal parts of anykind or rods so I do expect that this will continue (progressive) and the degenerative desease of my spine. But I'm happy with my life and the accomplishments that I have made, so right now no surgery because it would take more than one and there is no guarantee.

suejeryl
11-11-2004, 02:48 PM
i think connie has a good point about using your own idea about the future to help make the surgery decision. i refused to let anyone talk to me about surgery for years. despite daily, debilitating pain. i have a friend whose mother is in her 70's and who arranges her whole day around her back pain and i thought that's me and i'm only 49; i guess it isn't going to be easier when i'm older! so i decided to have surgery; it was an easy decision given my daily pain level and that thought of the future. i'm 8 weeks post-op and i feel well most days; my back pain has been relieved (really!); and i'll be through this soon. as for having babies, well, my back hurt so badly while i was expecting my son that we decided to adopt our daughter. my kids are 9 and 7 now; they've been good assistant nurses!

Karen Ocker
11-12-2004, 05:39 PM
No one can talk you into surgery.

I personally was so grateful at the age of 60 (2 years ago) that I could be helped (curves 30-80-40) with breathing problems that I counted the days. I was ready.

I was on another forum for revision surgeries. One person shared with me that by the time she made up her mind to do something her lungs were too far gone to undergo anesthesia. She now need oxygen 24/7. She is in her 50s.
In 1995 my major(fused) curve measured 64-7 years later I was 80.

I am now back at work, pain free and last spring I hiked in the Alps at 6,000 feet.

The recovery was long and actually seemed endless because of my age. It took almost 2 years for my lungs to recover because one loses some lung function from the surgery itself.

Karen

Jenny Spencer
11-13-2004, 01:15 PM
Linda,

I was wondering if you could explain further what you meant whhen you sald recently that "older" peolple whom you know who have relatively little pain are the ones who seem to be the most unhappy about their outcomes.

Thanks,

Jenny Spencer

Danite
11-14-2004, 10:44 AM
Hi Jenny,

Please note that I'm not in favor of surgery unless it is totally necessary, almost life or death type situation. So my personal opinions will almost always recommend second opinions and other options instead of surgery. As for the pain, ask your specialists, most will agree that the older an individual is, the more challenging the recovery is pertaining to pain and physical activities. This is not uncommon. Do your own thing Jenny, and listen to yourself. I do not believe my pain would change for the better or otherwise be decreased by further surgery. So therefore I would not gain anything by having it, it is a trade off. In fact I personally believe that the chances for increase pain and further surgery after this one is highly likely if I decided on such. So unless I will benefit from it in some way or form, I prefer not to go thru it again. But this is my opinion, not always right, not always wrong.

LindaRacine
11-14-2004, 01:13 PM
Hi Jenny...

I'm not sure I can explain it any other way, but I'll try. I'm talking about people who are in their 40's and up, who have little or no pain. Surgery will almost certainly cause those patients significant pain, at least in the short term. In the long term, some patients have pain caused by the surgery. While that long-term pain is usually not enough to cause a loss of function, I think it sometimes feels to people in that situation, that they're worse off than before surgery (despite the fact that they are no longer at significant risk of progression).

For those in pain, there is a multitude of studies showing that they are better off after surgery.

Hope that explains it. I'm not trying to dissuade you from undergoing surgery. I'm just trying to be sure you have as much information as possible to help you make an informed decision. I think that if you go into surgery knowing that you're at high risk of short term pain, and at some amount of additional risk for long-term pain, you're more likely to have a good outcome.

Good luck with your decision.

Regards,
Linda

lrmb
11-14-2004, 10:47 PM
Hi HGD24...

Feel free to email me if you'd like to "talk" about this. To recap, I'm 29, with curves at about 48 and 30; doctors are pretty sure they will progress and my latest two opinions said they would consider surgery around 55-60 degrees. The "having kids thing" is a big deal. But it sounds like with curves of your size it would usually be recommended to have the surgery - I'm not sure if at that point it is truly "elective" any more...?

My email is lrmb24@hotmail.com if you want to get in touch.
All the very best. ~Laura

momoflacrosse
11-14-2004, 11:55 PM
Hi:

I would guess that I reached skeletal maturity in my teens and my curves stayed pretty stable until my 30's at around 30/20 but since 1995 at 42 my curve went from 37/25 to being 58/40 in 2003 so it would seem that skeletal maturity doesn't necessarily mean that your curves won't get worse. I just had another xray taken last week but until I see the surgeon today I won't know the Cobb measurement. I am not sure what to expect from this appointment -whether he will opt for surgery or not but I do have the name of a 2nd surgeon in Toronto that I will probably see for another opinion. I know that this is a huge operation but I am at the point where this pain and lack of function is affecting my life so much that I am ready to do it if it will give me some of my life back again. At 51 I am still quite young enough to hopefully recover well and I have lots of living left to do. I am not sure how old you are but as you can see your curves can defnitely get worse as you age.

Nancy

Danite
11-15-2004, 12:01 PM
SURGERY IS ALWAY, ALWAYS AN ELECTIVE.

Jenny Spencer
11-15-2004, 01:11 PM
Danite,

Many thanks for your advice about listening to myself.I've not done that recently!-Just been so overwhelmed by other people's views and advice.

Best wishes,

Jenny

Jenny Spencer
11-15-2004, 01:15 PM
Hi Linda,

Thank you very much for your excellent explanation.It has given me an important perspective on this very difficult dilemma.

Best wishes,

Jenny

Kimber
11-15-2004, 03:15 PM
Linda, You mentioned future pain as a probablilty after adults undergo scoliosis surgery. Do you believe this is the same level of probability for people who have surgery in their teens?
Kim

LindaRacine
11-15-2004, 04:51 PM
Kim...

No. Most teens have only short-term post-op pain. I'm not sure why.

Regards,
Linda

cowprintrabbit
11-16-2004, 06:35 PM
Linda, I find very few stats in my age range (27 next month). Would I react more like an adult or a teen painwise? Am I still young enough to have an advantage healing and infectionwise because of my age?

Thanks, Christine

LindaRacine
11-16-2004, 10:49 PM
Hi Christine...

Most of the people I know who are under 40 have had relatively easy recoveries and excellent long-term results. If you know you're going to have to have surgery eventually, I would definitely recommend that you get it over with while you're still young.

Regards,
Linda

HGD24
11-17-2004, 11:49 AM
Linda,
Your post is very encouraging and along the lines of what my doctors and a few nurses who are in my family have been telling me as well.

Christine,
I just turned 30 two weeks ago and like you, found very little regarding people our age. I am scheduled for surgery in January and have found the people on this site to be amazing resources!