Many of you recently read about Our Torticollis Journey during T’s first year. But, in the past two months, a lot has happened, and I wanted to share how our journey has continued. Because as I mentioned before, I have had such a hard time finding others who share our story, and especially the path we recently chose. And that path is surgery to release her SCM muscle.
To pick up where we left off in the first part of the journey, Miss T was going to have an appointment at 1 year with our craniofacial and plastic surgery specialist to make a final decision on whether or not they suggested surgery to release her sternocleidomastoid muscle. And as a quick recap, we had spent the past 12 months doing physical therapy, taking her to the chiropractor, using kinesio tape and a tot collar, and ruling out eye and bone problems. In other words, we felt like we had done everything we could.
Despite our efforts, she was in the 5% of kids who still had a persistent 5-10 degree tilt. No, it wouldn’t ruin her life if we left it, but yes, she would probably live a life with some chronic pain, frequent TMJ, potential vision problems, and more. So, when we took her to her appointment, and our doctors recommended we move forward with the surgery, we agreed. We wanted to make sure we did everything possible to give our daughter the most successful and carefree future possible. We wanted to have no regrets.
So, we scheduled the surgery.
She had the procedure done a little over a week ago, and the truth is, I think it was way harder on my husband and I than it was on her. We had such a hard time knowing that we would have no control over what happened to her in that surgery room, and handing our little girl over to the doctors.
Luckily, T seemed much less concerned than we were. She didn’t really like all the weird machines and unfamiliar people when we got to the hospital, but otherwise, she was blissfully unaware. They gave her a cute little robe and had lots of toys for
daddy her to play with while everyone got ready. Luckily my husband was even able to stay with her when they went to put her under, so she was never left alone with people she didn’t know until she was fast asleep.
From there, the surgery only took about 25 minutes total. When she was finished and woke up (which they later told us was basically immediately – no surprise with our high energy little whipper snapper), we were able to go and be with her right away. The incision was about an inch long and just above her collarbone at the base of her neck. It was closed with dissolvable stitches and covered in bandage glue that dissolves with the stitches, so we wouldn’t even have to come back or do anything to dress it ourselves.
When we first saw T, she was a little disoriented, groggy, and crabby. But after the nurse took out her IV and we got a little apple juice in her, we were actually able to just pack up and go home. There was no long hospital stay, no waiting, and no uncomfortable bandages or neck brace – just a relieved and grateful mommy and daddy!
On our way home, and out of nowhere, huge snowflakes started to fall. We found ourselves suddenly driving home through a blizzard in early April. We were pleasantly surprised to see that T was no longer crabby and seemed to be completely back to her old self, singing in her carseat, and chomping away on her bunny crackers. And as we drove home through the snow on an almost empty highway in the early morning hours, we were overwhelmed by relief. We were so glad that the surgery was over, that our baby was okay, and that we would never have to question if there was more that we could have done for her.
And thanks to all of you who sent your thoughts and prayers our way, it went more smoothly than we ever could have imagined. Your prayers made all the difference. Because, even though it was scary, we know that God was watching over her that morning, guiding the surgeon’s hands, protecting our little girl even when we couldn’t, and providing peace and assurance for my husband and I.
Today, about a week and a half after surgery, I can tell you that there was no miraculous sudden fix. The tilt didn’t just disappear, and the doctors had warned us of that. Because after a year with tort, a lot of what remains is habit, regardless of surgery. So now, we will continue to take her to PT to try and re-train her behaviors knowing that the muscle restraint and tightness that used to hold her back is gone!
Overall, I am extremely glad that we did the surgery. We never have to question whether we could have done more for our sweet baby. And if I had the choice to do it all over again, I would.
And to any parents out there considering surgery for your little one, please do not hesitate to reach out. I would be glad to answer any questions that you might have!
**UPDATE** It has been over a year since T’s surgery. She is now 2 and 1/2 and you know what? You would NEVER know she had tort. Her tilt is completely gone, and my husband and I often forget she ever had it (which we thought would NEVER happen). You can’t even see her scar at all, and the flat spot on her head is long gone. I think it’s safe to say all of our efforts paid off, and we wouldn’t change a thing. We are so thankful for our happy, healthy, and perfect little girl!
**UPDATE #2: T is now FIVE years old. Again, you would never know she had tort. I am so glad we did surgery, but to all those considering it, this is what I would say to you: Be wary of the surgeon you choose. It’s alarming to me how many parts of the country and world STILL don’t know much about torticollis. I hear people saying the surgeon they met with says their little one will need a neck brace for weeks after surgery. That is a big RED FLAG to me. Our surgeon made it very clear that there should be NO neck brace. My daughetr literally walked out of her surgery day of and was able to move her neck without a brace and without pain. The whole point of the surgery is to stretch/loosen the neck muscle, and in order to do that, you need to MOVE it. Holding it in one place post-surgery with a brace will make it stiffen right back up and cause a loss of range of motion. So, if your surgeon is advising this, they are either 1. doing a much more invasive surgery than what my daughter had or 2. they son’t understand the SCM muscle well (which I hope is NOT the case for you). I won’t get into it any more here, as each child’s case is different… but all this to say: Parents, PLEASE, be sure you are doing surgery with someone who has LOTS of experience with torticollis and a FULL understanding of what exactly the surgery should be accomplishing!