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dfinner
06-07-2005, 07:38 PM
My 17 yrs, 10 mos daughter is scheduled to have surgery in a week. She has a thoracic 50% curve which has stayed stable for about a year now. She is focused and ready to have the surgery, but I am so doubtful that it is the right thing. We have tried bracing, exercise, chiropractic, but nothing stopped the progression until she had finally come to the end of her growth spurt. But it's stable now and chance are it won't progress much further.

I am doing my best to be positive around her -- supportive, encouraging. But every time I think about the surgery I cry and am confused about how to know what is the best decision. I have 100% confidence in our surgeon - we are blessed to live in a community with an excellent academic teaching hospital. I am just having a really hard time trusting that surgical intervention -- when it is only recommended, but not necessary -- is the right way to go.

I would welcome hearing from anyone who struggled and/or is struggling with the decision to have surgery. Thanks. Diane

LindaRacine
06-07-2005, 07:53 PM
Hi Diane...

I can only imagine what it's like for you.

Most curves of 50 degrees will progress at 1 to 2 degrees per year. However, since some won't, your daughter might live her entire life without ever needing additional treatment.

Is she concerned about the cosmetic aspect of scoliosis? If that's the reason she's pushing to have surgery now, that's something to consider. It's not a valid reason on its own, but teamed with the fact that her curve is already substantial, I think I would support her decision to go ahead with the surgery.

I hope everything works out for you and your daughter.

Regards,
Linda

dfinner
06-07-2005, 09:42 PM
Thanks for your reply and kind words, Linda. Yes, she is somewhat concerned about cosmetics, but mostly she is going on what the surgeon said might happen as she ages and she doesn't want to be a "hunched over old lady." I am also concerned that there will be long-term consequences of DOING the surgery....

Barring health considerations - I wonder if recommendations for scoliosis surgery have something to do with U.S. culture's unhealthy emphasis on physical appearance/perfection. I understand that IS a consideration for her (and only she can make the decision about how she wants to live). I just want to make sure that, with all things, the choice for surgery is balanced with scientific evidence and commitment to conservative approaches to health.

df

susannajon
06-08-2005, 12:12 AM
Hi df,

We struggled with this question quite a bit as well. What convinced us to go ahead with surgery was talking to lots of doctors, as well as lots of adults who had had surgery, or who had chosen to delay or not have surgery. We looked at the emerging technology, and the likelihood that something other than spinal fusion might become available in the near future.

The general consensus we heard was that if you're going to have fusion, you have the best chance of good correction if you are young and your spine is still somewhat flexible. As you age and the spine ages, the curve can get progressively stiffer. Also, there is a chance that the continued curve might cause permanent nerve damage, or the vertebrae might sustain damage from the long term pressure of the curve.

Also, as far as emerging technology, there aren't any new techniques that will be widely available any time soon. Fusion is expected to be the preferred technique for at least the next 5-10 years.

Based on all of this, we elected to go ahead with surgery. Our daughter was able to get a really good correction, fusing just a few vertebrae. She's only 3 months post-op, but as of now, we have no regrets. I do worry about the long term, but for now we're happy.

LindaRacine
06-08-2005, 01:17 AM
Hi Diane...

While it seems most surgeons consider the cosmetic aspect, I've found very few who will recommend surgery for curves under 45-50 degrees. That's because the odds are that those curves won't increase.

I think there's very little difference between having surgery at 16 and having it at 25. If it were my kid, I think I'd try to convince her to wait a few years, but would ultimately let her make the decision (based on the facts you've supplied). You can tell her that it's unlikely she'd be "hunched over old lady." And that she can always decide to have the surgery, but once she has it, there's no going back.

Regards,
Linda

ProudParents
06-08-2005, 01:47 AM
Tough call! Turning 15 next month, our daughter is near the end of her growth with a 50 degree thoracic curve. We havenít decided what to do yet but we have time to decide. Here are just a few thoughts that we have grappled with:

If we ever think that surgery would be in our daughter's future, there is a huge advantage of getting it done before adulthood.

Surgery would be a disaster if it were to be unsuccessful. There is always that chance, but finding the right surgeon can drastically reduce those risks.

If surgery is performed, there is certainly a good chance that unforeseen associated problems could arise twenty years down the road, but no one is certain with the new surgical techniques and instrumentation being used today.

What if the curve never progresses, future problems are rare, and she lives happily ever after with just a slight deformity?

Is it too much to expect that the surgery would go great, recovery would be complete, the rib hump would be gone, and no serious complications would ever arise?

What if we donít opt for surgery and the curve progresses at only one degree per year, the curve would reach 70 degrees at the age of mid-thirties. At that point, surgery would be more difficult with a better chance of having complications not to mention having a family and job to contend with. Will the medical availability and insurance be there in the future.

Our bottom line conclusion: Scoliosis is not a good thing to have. With surgery, you will probably have some type of problem crop up sometime in the future. Without surgery, you will live with a deformity and probably have some type of problem arise in the future.

We wish you the best and hope that your daughter has a great surgical outcome. At 50 degrees, most data would predict that your daughters curve would increase causing problems later, so if you are confident in the doctor, you have probably made a logical decision to proceed with the surgery.

momofthree
06-08-2005, 06:52 AM
We were in your exact position. Our daughter is 16, at diagnosis, her curve measured 42 deg; stayed that way for one year even though thru xrays it was evident that her growth had stopped. We were going every 6 months for xrays and 6 months later it had jumped to 52 deg. At that time it was recommended that she have a fusion. (this was Oct. 2004) We were told that once a curve reaches 50 deg there is a 90% chance that it will progress into adulthood; as the doc. stated " In 20 years, at 36 yrs old, your daughter very well could have a 75-80 deg curve and it could start affecting her organs" at that point, we agreed that surgery was necessary. Surgery as a teen vs. adult is pretty significanty easier.

On May 24 she was fused from T3-L1-I struggled with the decision, as you are now-she was not in pain, she was not too crooked (or so I thought) I looked at the surgery as a "cosmetic procedure" more than anything and I am so not into the "cosmetic thing" especially after hearing the recovery, risks ect....

End result--I am glad she did it, she is glad she did it. At 2 weeks post op she is doing awesome-yes it was tough, there are some bad days, but when I look at her now and see how straight she is, her torso is not twisted, her ribs are back in place, I did not realize how crooked she really was. I do believe that it was going to progress- Kids rebound faster than adults-spines are easier to manipulate when they are young and active. It helped that my daughter is in good athletic shape-she is down to 2-3 pain pills a day, moving around great and waiting for the ok from the doc to get out and about.

Good luck with your decision. Believe me, I know exactly how you are feeling right now.

Kim

KRIS ATKINSON
06-08-2005, 07:02 AM
Dianne, I assume you already know about Shriners Hospital for Children. They do the surgery for free for children, as long as the child is admitted or applies or whatever, by the time they are 18. Then I think you have until 21 to complete any surgeries. We were scheduled to have surgery June 15, with the very good surgeon in Charlotte, until we went to Shriners in SC. Our daughter was thrilled with the hospital and the surgeon, and we parents loved the price, so we cancelled the other surgery and are now schedule for July 18 at Shriners. We were shocked to realize the surgery costs from $100,000 to $300,000, with surgeons other than Shriners. Shriners is free and our insurance would have left us with $7,000 to pay with the other surgeon. Since the surgery is free now with Shriners and the free option is not available for adults, that may be something you want to consider. My daughter's curve is now about 70 degrees and she is having back pain when she does not wear her brace, so we are thankful surgery is finally drawing neat. If her curve increases to 70 degrees, I agree that having surgery as a teenager is much better than waiting until it is harder for the surgeon to make the changes and harder on the "adult" patient to recover, as well as expensive as an adult. Good luck and I'll pray for your decisions! Kris

nikyergen
06-08-2005, 11:19 AM
Diane,
Surgery is pretty scarey for your child when you are the parent. Staying positive and not showing fear is the hardest step you will take. Be reassured that we have/or will feel this way when our children have surgery. Our daughter is 12 weeks post op today. We are getting ready to load 10 of her show sheep in the trailer shortly, this morning, and head off to a huge livestock show. I was terrified of surgery, but today as I contemplate the past 16 weeks, I am so glad she had surgery and everything went perfect. As far as I am concerned, better than perfect. She has recovered wonderfully. It is the biggest thrill to see my daughter so excited to go to this show and see people that she only sees once a year, because of the location of the show, and show them her NEW BACK.

Try to get some rest and take care of yourself during this next week. You are going to need all your strength for the following weeks of surgery. I know sleeping is hard to do when you are worried. I only slept 2-4 hours a night for the four weeks prior to surgery. I just couldn't sleep.

You take care and I am praying for your rest and peace.

'til later,
Nikki

Pips
06-09-2005, 11:09 AM
Hi
I come at this from a different angle as I am now 42 years old! I had a 45 degree lumbar curve by age 12 that didn't get any worse until I was nearly 30. I had no surgical correction when younger as they thought once I stopped growing that would be it. It's now 60 degrees and rising! In the last 10 years I have had to give up work and live with quite debilitaing pain on a daily basis. I am now waiting for surgery to deal with it but I know recovery will be much harder for me and correction will not be as good as if I were younger. The decision to go ahead with surgery has been a hard one to make but I simply want to face a future where I know my worst possible outcome is that from now on I won't get any worse.

If it was me in her shoes, I would aim to get through school and college and then plan to get it sorted whilst still young. At least if you get it done you know that she can get no worse in the future - if you don't then her future will always be a bit of a gamble.

Hope the 'older' viewpoint is a help.
Pips

Jill K's Mom
06-09-2005, 08:52 PM
The best words in our lives now are post-op. Much better than pre-op. I totally trusted our surgeon. It is not cosmetic. Scoliosis can compromise your organs, when the spine torques, the ribs plus the irregular alignment can eventually put your organs in danger if the curve is so great. Although cosmetic benefits exist, I still think of my daughter's surgery as a life-saving surgery to protect her life, her heart and lungs and her longevity. She is better than ever. Best wishes for your daughter and your family. It was a life changing event and it went extremely well. God speed.

dfinner
06-11-2005, 09:09 AM
I so appreciated reading all of your kind and varied responses. It helps just to know that others both struggled with the decision AND post-op feel positive that they'd made the right one. I also really appreciate hearing from adults who are currently struggling with scoliosis and/or have the procedure later in life. My greatest wish is that I could see my daughter's future with and without the surgical correction. Hearing from folks along the lifespan is so helpful.

Unless I receive some type of divine vision not to (!), it looks like we will be moving forward with the surgery on Tuesday. We've been in limbo with the decision for about a year now, so in many ways it will feel good to be done with the waiting and worrying, and on to the recuperation. This weekend we are off to a waterpark so that she can have at least a piece of summertime before pre-op stuff on Monday.

It really is comforting to know there is this e-community out there. I wish you all well in your stage of healing and life.

Diane

Kat
06-11-2005, 10:51 AM
Diane,
I had the surgery twelve years ago! I had a 60 degree curve in my upper curve and 35 in my lower. Although at the time I did not want the surgery my parents told me it was the best thing. Scoliosis can cause other medical problems later.Now days the surgery is a little better, but it does take time to heal. I think having it while you are young is the best route to go. I had my surgery at Vanderbilt Childrens Hospital. Although for about a year I couldnt do much activity. I ran track in high school and showed horses. I even rode on the Equestrain team at the University of Tennessee for 4 years. Although they only corrected my curve to 40 degrees it will not curve anymore so I will not have the complications I could have possibly had. People can not tell I have scoliosis at all unless I show them my scar. My cousin also had this surgery recently at age 15 and with her she desnt hardly have a scar. I am here to say I dont know if surgery is the answer in your case, every case is different, but I glad I personally had it. Your daughter might not appreciate it now but will be gald later on in life. A spinal fusion isnt a fun operation in the short term but it beats the other consequences in the long run. And when she is my age she will hardley know she had the surgery and will be able to lead a normal, active life! ( At least in my case this is true)

brittany
06-12-2005, 08:11 PM
Diane,
Hello...I am a 16 yr. old girl who has had 2 spinal surgeries. My latest surgery was almost a year ago. I read your post and my mom was the same way you are!!! From my point of view, I am so glad that i went ahead and had the surgery! I was in so much pain before the surgeries that I cant tell you how bad the pain got and fustrated I became. I was very emotional before the surgery and I didnt know what to think about going through all of that, but i must say that it was well worth it. I had a 79 degree curve on the bottom and a 68 degree curve on top. I was in the hospital for 8 days on my first surgery and on my second surgery i was there for 4 days. My first surgery, the doctors went through my side to get to my back. On the second surgery, the went through the back. Even though they were difficult, I know that your daughter will get through it. I never thought that a wimpy person like me could go through something like that, but i did and i dont regret one thing about it. There are moments that are better than others, but in the end it will work out for the better. I promise. If you ever have any time before she goes into surgery, fell free to email me at gajrteen@aol.com ..ill be happy to answer any questions that you or she may have.
<3brittany

carolnj
06-15-2005, 10:58 PM
Diane, hi. I am right with you and I feel your pain and anxiety. My 16 year old son is scheduled for anterior surgery on June 22. Everytime I think about it, I get physically sick. I am strong in front of him, but inside, I am a mess. I know in my head it needs to be done; we took him to a couple of specialists for second opinions and I am confident with the surgeon we chose, and yet....I want to cancel and run for the hills, not that it would solve anything and we would still be looking at surgery in the future.

I guess I'm just posting to show you support and let you know you are not alone - we know it has to be done and yet we wish with all our hearts it didn't and that we could just close our eyes to it. But, we can't. Who said parenting was easy, huh? This has to be the toughest decision we have had to make with our son, but the discs under his primary curve are already shifting due to the pressure from his spine not being properly aligned and its either now or later and later brings its own complications.

Hang in there, be strong and please post afterwards and share your successful post-op news. Hugs to you, Carol