whether to correct kyphotic curve

[dawndd]

First of all, let me be clear that I am not asking for medical advice. I realize that each case is different and only a trained professional can truly advise me on the specifics of my child's case. However, having said that, I remember reading some people talk about whether their doctor would correct the kyphotic curve in addition to the scoliosis. My almost 14 year old son has only kyphosis caused by a congenital fusion of 4 thoratic anterior vertebrae. No one has told me the exact degree but I believe they've said it is greater than 45 degrees. Two very good doctors have said that they recommend "only" a posterior fusion in situ to stop the progression. They do not believe the reward of correcting the exisiting curve is worth the risk. The surgery to correct the curve would be two seperate surgeries involving a cutting through the congenital fusion on the anteriour side and them refusing posteriorly. Another doctor has said he thinks it is worth the risk. Has anyone else faced this type of decision? We are concerned about the very real risk of the ocrrecting type surgery. We are also wanitng to do whatever we can to assure that he will have the least pain or problems later in life. Right now he is in not too much pain and really only on long car rides. I don't know that the major surgery would necessarily assure him a pain free future. We so much want to make the "right" decision and the stress is pretty high in our lives right now. Thanks for any input you can give.

[nikyergen]

Dawn,
You have such a tough decision to make. All I can tell you is my 16 year old daughter has Scheuermann's Kyphosis, 88 degree curve. She had posterior surgery on 3/15/05 and is doing wonderfully. Her doctor got over 50% correction. If you didn't know she had the problem, you wouldn't know it today. The upside to her surgery. She doesn't have the constant pain, which has gotten worse over the years. She vary rarely takes pain relievers anymore. I can really understand the risks you are taking in having the fused vertebrae released. I know you have already seen three doctors, sometimes you may need more opinions. You need to feel completely comfortable with your decision and if it means going to two or three more doctors, DO IT and don't feel guilty about it. Mary Lou took her daughter to five doctors before making a decision, and there is nothing wrong with that. These are our kids and we want to do what is the best for them and the least invasive as possible. We really liked the first doctor we saw and used him.

Keep us posted. I wish I had more to offer you.

'til later,
Nikki

[LindaRacine]

Hi Dawn...

Kyphosis curves under 50 degrees are not considered abnormal.

Following are links to abstracts from some kyphosis studies (newest first) that might be of interest:

http://www.ncbi.nlm.nih.gov/entrez/q...72&query_hl=11
http://www.ncbi.nlm.nih.gov/entrez/q...94&query_hl=11
http://www.ncbi.nlm.nih.gov/entrez/q...16&query_hl=11
http://www.ncbi.nlm.nih.gov/entrez/q...91&query_hl=11
http://www.ncbi.nlm.nih.gov/entrez/q...87&query_hl=11
http://www.ncbi.nlm.nih.gov/entrez/q...30&query_hl=11
http://www.ncbi.nlm.nih.gov/entrez/q...30&query_hl=11
http://www.ncbi.nlm.nih.gov/entrez/q...07&query_hl=11
http://www.ncbi.nlm.nih.gov/entrez/q...41&query_hl=11

Hope these are helpful.

Regards,
Linda

[Mary Lou]

Dawn,

Nikki is right. I took my daughter to five different doctors/three different hospitals before agreeing to surgery and choosing the doctor to do the surgery. You need to feel 100% comfortable with your doctor and your decision whether that is surgery or not. There is enough stress involved with dealing with Scoliosis and/or Kyphosis, you don't need to be second guessing your decision. I would ask a lot of questions before consenting to surgery.

If there's anything else I can help you with, let me know. We're all here for you to offer support and hopefully, helpful information.

Mary Lou

[zerodegrees]

Hope this helps

Hi Dawn,

My name is John & I am 36 yo with Scheuermann's Kyphosis. I am due to undergo surgery both Posterior/Anterior in about 4 months time (in the uk). Due to various reasons my kyphosis was left alone as a teenager and progresivley over the years the pain has become much worse and is with me most days. My curve is 80 degrees & aside from the physical discomfort the actual curve bothers me greatly from a cosmetic point of view, despite my partner & others claiming not to notice it

Anyway, I can't wait to get it all over with and my only regret is not having had it sooner. My surgeon says they can have a great outcome with surgery for kyphosis & there is also slightly less risk of spinal cord damage. If the surgery is not done aparently research suggests that later in life there is a possiblility of breathing difficulties.

I hope this gives helps you a little. My reasons for having surgery now are 50% pain 50% cosmetic. My curve hasn't progressed at all since I was a teenager. I am both daunted & excited at the prospect of having a reasonably straight spine.

Good luck with your decision & remember, if it doesn't feel right agreeing for the surgery to be done now then there's nothing wrong with having it done in years to come

Best wishes

John

[nikyergen]

John,
I am glad you mentioned the breathing problems. Crystal also has severe asthma. Since her surgery in March, her asthma has improved greatly. You said your partner and friends claim they don't notice your back. That is because they love you for who you are on the inside. A lot of Crystal's closest friends claimed the same thing. Wait until after surgery. They will see the difference and will be absolutely shocked at what they see. I am so glad that you finally have the chance to have your back corrected. You will love your "NEW BACK". That is what Crystal calls hers.

We understand that physical pain and the cosmetic pain you are going through. Crystal got to the point life just wasn't worth it any more. But, since her back surgery, life is worth living forever.

Good Luck To you.

'til later,
Nikki

[susannajon]

Hi dawndd,

Sounds like it might make sense for you to get a couple more opinions. I know for our family, we got about 5 opinions before we made our final decision on surgery. We heard the same recommendation 4 out of 5 times, and it helped us get to the point where we felt absolutely comfortable going forward with surgery.

Scoliosis/kyphosis surgery is rarely an emergency procedure, and if both you and your son can get to the point where you feel 100% confident that you're making the right choice, you will go into surgery with the best possible attitude. Take your time, get a couple more opinions, talk to us here on the forum, and only go forward when you feel at peace and entirely comfortable with your decision.

Our whole family is sending you our thoughts and prayers.