should I or should I not do it? Questions

[cherrylips]

HELLO everyone

Should i do the surgery or should i not?? The doctor told me its my choice and im not sure whether i should do it.. My curves are T48 and L20. Im 19 years old. My back hurts everyday but its OK. I just have to lie down for an hour and it'll be alright..So i dont think im in much pain. But im always so tired and fatigue.. I also dislike my posture..So do you think i should go for it?

What are the benefits if i do it? Is the pain bearable? Im a person who cant stand pain even if its a needle. What are the symptoms after surgery..Like is it easy to go to the toilet to do business Lol..And how did you guys had problems sleeping at night? These are the few things im worried if i do it..

[titaniumed]

Welcome Cherrylips,

Tough decisions, very tough. I was afraid when I was your age years ago, and each and everyone of us is afraid. That is one thing we all have in common.

I had twin 50's when I was your age, and my curves did maintain for many years. Some curves progress and some do not. If you have scoliosis, you should monitor your curves with x-rays through the years.

I started going to a good Chiropractor for pain control when I was 28. By the time I was 48, my pain was out of control. Major pain made my decision for me. There are many alternative methods to help maintain your pain.

It is your decision. Nobody can make that decision for you. If you are going to make your decision, you should read as much as you can, and accept the fact that maybe some day you will need to have surgery. It would be a good idea to read David Wolpert's book sold here on NSF. Being informed and knowing the facts is something that is pretty important. Being informed about complications from any serious surgery is important. Knowledge is power.

Surgical advancements have improved a great deal since I was a kid. I waited for technology to advance and everything worked out pretty good. You can look at this subject quite a few ways, and one being that if you do wait, maybe need surgery 20-30 years from now, just think how far things will advance in that time.....

I would keep an eye on that 48 you have, maybe a coronal x-ray once a year, and live your life to the fullest. Request copies of your x-rays burned to disc for your records. Keep reading and posting here.

Surgery is permanent. Take you time when making your decision. This is something you don’t do to just "get it done".
Ed

[Confusedmom]

Hi there,

Everything Ed says is right. And I'll just add that the key for you is to find out whether your 48 degree curve is progressing. You need to have it xrayed every 6 months to a year until you see it move several degrees (there is a wide margin of error). If it is not progressing, you might never need surgery.

For the pain, you might see if you can get your doctor to prescribe physical therapy. It can help a lot!

Best of luck,
Evelyn

[ddb]

Hi Cherrylips - I have two girls who have scoliosis. My oldest (now 20) was first seen when she was 16. She was also given the decision you could have or not, but was told evenually she would need surgery. She was in no pain and choose to wait. She is now having surgery 11/3. Her decision to go forward was continued curve progression, started having severe muscle spasms.

My youngest was not given a that option. She was monitored for 9 months, but had a fast progressing lumbar curve, and pain. The Dr decided surgery was needed. We did wait a year for her to wrap her mind around what was going to happen and that time was well worth it. She needed to come to grips with it and when surgery was done the same levels originally planned were fused.

Both DD's went to PT prior to the surgery decision.

Some surgery's are long other short - this makes a difference in recovery and limitations. My youngest is a short fusion - she's back to normal now- in PT and building a strong core to carry her body and protect her unfused areas hopefully for life.

I agree with the others - this is your decision. Research your options, and find a surgeon that you trust. Ask lots of questions, and use them and their knowledge to help you along this path.

Best Wishes
Dee

[Pooka1]

Great, thoughtful responses on this thread.

Maybe Linda will comment but I am not so sure you will easily find a surgeon who will fuse a 48* without evidence of progression. I think they will suggest PT for the pain which has a better track record than surgery as far as I know.

I am a lay parent with the following thoughts...

Based on Hey's comments on his blog, I think he would fuse you at 48* just for pain but of course I don't know that. I'm just saying you may have to shop around if you decide you want the surgery. And I'm saying that not everyone who gets fused for pain has less pain post-op.

But I think you are right to investigate. Beyond the pain, waiting has the potential to add vertebrae on that would not have needed to be included in an earlier fusion. This is a controversial area in my opinion though I don't think it is widely viewed as such. You might want to ask how many vertebra would be fused if you do it now versus waiting until it gets to say 60*. Ask specifically if it might mean having to go further into the lumbar. You might want to figure that into your decision.

Dee, it is interesting what you wrote about needing time for surgery to kick in. With my first daughter, from diagnosis to coming off post-op restrictions was 14 months. Given that her surgeon continually insists this will be her only surgery for scoliosis in her life, her "contact time" with scoliosis is only 14 months. A whirlwind yes but the ability to deal with it and then put it in a bag after that time made me think she got the better deal than her sister whose curve moved slower, who wore a brace for a year, etc. etc. She has been off restrictions for a while but I am not so sure she is done with scoliosis given her small L curve remaining. The surgeon thinks so and insists it is stable so what do I know?

Good luck on your decisions.

[peachrush7]

As someone who had curves similar to yours (mid 40's T & L) at your age, I would just say this:

1. There is no way to know for sure whether your curves will get worse or stay the same. Mine were fine for a long time, and are just now progressing to the point where they are affecting my every day life. I always had some discomfort, and dealt with it by staying active and doing exercises regularly.

2. Try to imagine what you'll be doing in 10-20 years. Will you want to stop any of it to have a major surgery? You may never need it, and you may need it sooner than later. I just wish when my drs. told me back when I was 18 that they really had no idea whether I'd get worse or not! They were confidant that mine wouldn't get worse, and here I am now at 52 degrees both T and L. I am now not sure whether to have children, because of my curves. It's tough!

Read a lot and get several opinions! This forum is a great place to hang out and get an idea from people who waited till their 50's to have the surgery, and those who had it a lot younger.

Good luck!

[jrnyc]

i am always surprised when P.T. works for folks with scoli...none works for my pain...the therapists themselves kinda told me that...they just offered me warm wet towels...which were lovely...but dont know that they were worth the price of a PT appointment!
i am happy for them if the sessions help anyone....

jess

[Singer]

If it were me, I would wait to see if your curves progress over the next few years. If they stabilize, you may never need surgery.

Personally, I'm glad I waited til I was older because I was mature enough to handle it and I had the support of my husband. Also, the pain and progression had gotten to the point where my choice became more clear. I still agonized over the decision, but deep down I knew the surgery was necessary to halt the progression.

That being said, this is a huge surgery and there are no guarantees that you won't be trading one set of problems for another. Since you're so young and your pain is not debilitating, you might want to wait and see.

[Pooka1]

If I were you I would ask specifically about how often T curves morph into double majors. It just seems like the folks who waited longer tend to need longer fusions.

If you can get away with a fusion that ends at L1 or L2 now, and if a surgeon tells you there is a reasonable chance it would have to end lower into the lumbar if you wait and the curves progress, that is a reason to fuse now. The paradigm as I understand it is fusions that end above L2 (inclusive) are not expected to develop adjacent level disease at the distal end and most will not add on.*

Only a surgeon can advise you on this. I would get several opinions.

*The recent SRS meeting in Japan had a presentation on how certain Lenke type T curves tend to add on even if you follow the recommended methods for determining lowest instrumented vertebrae.

[Confusedmom]

I am now not sure whether to have children, because of my curves. It's tough!

Peachrush,

I was 55* before I had my first child and have increased to 68* in the almost 8 years since. I would absolutely have my children over again in an instant!! I do think pregnancy increased the curves, but they probably would have increased anyway. I have also had doctors tell me it is easier to handle infants and young children before your back is fused. (Not that it's impossible afterwards, just maybe somewhat more awkward with getting them in and out of crib, carseat, etc.) Anyway, I know you didn't ask for advice, but I hate to see anyone postpone having children because of scoliosis. Good luck with your decision.

Evelyn

[Debra JGL]

Cherrylips,
Of course you're in the gray area of surgery being recommeded generally. It's very hard considering such a big, life changing procedure. Progression would seem to be the key indicator for you. Hopefully you're seeing a doctor and tracking your progression. Have your curves progressed much over the past few years? Were you braced when you were younger, and the curves continued to progress anyway? Also, it's a good idea to find out what your surgical options are at this point in your life. This surgery is a big, complicated procedure with definate risks - but being young has its advantages (flexibility, general health, spine health) that could mean lower risks and shorter fusion and perhaps less invasive. Of course there are many advantages to waiting too. My doc. said my recovery at age 45 would be easier today than 30 years ago when I was 15 (when it was considered) due to all the surgical and technological advances. There are pros and cons to every decision so the more you find out the better you can feel about your decisions. Good luck with everything and take care.
Debra