Our family learned yesterday that the painful scoliosis bracing, isolation, and lack of sleep that my 14-year-old son has gone through for the last three years of his life was not enough to stop the progression. Now we are looking at a very difficult surgery, five days in the hospital, and months of recovery. My son does not want to go through the surgery. We both have white coat syndrome and our blood pressure goes up when we see or think about seeing a doctor. He has to go through additional testing to see if his hypotonia is caused by something that might cause complications. This adds to the stress.

Although we homeschool, anxiety about medical issues makes it difficult to learn.

Back surgeries are pretty unpleasant, that's for sure.

{{hugs}} Lori.

Sorry to hear that the trial with the brace didn't work, but maybe the surgery will give some lasting relief and better prospects for the future. We have a friend who tried all other options before surgery, and it was a real success for her. She is now a mother of two and can do just about everything she wants. I'm hoping for the same result for you all! Keep us posted.

Aww, I'm so sorry to hear that the brace didn't produce the desired outcome and that you have all this uncertainty to deal with now. I've seen lots of posts from you over the last year or so that I've been reading that document just how much of a strain that brace has been to him and how resolute he's had to be -- it must be so difficult as a parent to see him not benefit for having gone through all of that.

When they ask about pain level don't forget about C, the chronicity constant. It's a little known constant, the sum of how long it's been going on + number of past failed treatments + number of stupid comments recently made by well meaning people (such as myself). You take the physical discomfort level at that moment, and multiply it by C for the actual discomfort level.

All attempts at humor aside: I feel like I've gotten to know you and your son just a bit reading all your posts, please take my heartfelt wishes for his surgery to come up very soon and then be over with and for it to do what it's intended to do.

Polly

I'm sorry, Lori. My boss' son just had surgery for scoliosis, and my understanding is that he is doing much better now. I hope that your son will have a similarly good outcome.

sorry it didn't work out . There isn't much we can say to help you and him right now. Wishing you and your son a lot of luck and strength!

Oh Lori, I'm so sorry that you and your son are going through this difficult time, I am sending positive thoughts and prayers for strength your way. I totally identify with the white coat syndrome, I am not a stranger to passing out in medical/dental situations(!).

Just a thought, have you ruled out chiropractic treatment as an alternative option? That worked very well for my brother but he was younger, I think 11 years old when he and my mom chose a course of chiropractic treatment over the brace, and I don't know how severe his case was compared to your sons case. It took a couple years of regular chiropractor adjustments, special exercises and nutritional supplements but my brother came through it just fine.

wishing you both the best of luck for a speedy and safe solution,
Nik

So Sorry to hear this. Maybe you can think of it as, the surgery will soon be over and you will soon be on the other side looking back at this with such relief that it is over. sending positive good wishes.

I hope he's brave. He's already been brave to use the brace like he's supposed, maybe the surgery will be over sooner. hugs 'n' good wishes.

I'm so sorry you're going through this!

A friend of mine had back surgery for scoliosis after years of wearing the braces -- I think that was sixth grade for her, and she spent the summer in a body cast, but it really helped and she was happy with the results despite the summer of discomfort. I hope you get what you're going for!

Lori,

I am also one who has followed your posts for several years. I'm very sorry to hear that your son's scoliosis has worsened. I don't know much about the surgery to correct it, but words like full body cast sound terrifying.

I quickly googled "surgery for scoliosis for teenagers" and found lots of support groups. Maybe if your son meets other teens online that are facing surgery or those who have already had it, then he won't imagine the worse case scenario and perhaps see some positive cases.

As all of us have found here, sometimes you just need to talk to someone who is going through the same experience.

Let us know how his is doing. We will keep him in our thoughts.

Hmmmm.... Guess I haven't logged in for a while. Time to update the ages on the kids.

Maybe he has already explored these support groups, but here is one link that I found for Teenages with Scoliosis.
Just for Teens: Adolescent Scoliosis Society of North America

I think this sounds tentatively like good news: no more time wasted, and what must be a good chance of a treatment that works. From your posts I've read over the last couple of years, your son sounds like a capable person who's coped with his scoliosis and hypotonia well, and continues to have a thirst and strong ability to learn despite them. I'm hoping that the surgery is not counterindicated, and goes very smoothly.

So sorry the treatment hasn't worked...how heartbreaking. I hope that the surgery may give your ds some relief. My brother had surgery for scoliosis in 1982 and had a rod placed against his spine. His scoliosis was starting to effect his breathing. At most major children's hospitals, there is a "child life" department with specialists who can help minimize the anxiety of hospital stays and difficult procedures. Maybe they can offer some support.