Torticollis

[lunacat001]

I am writing this to help other parents out there searching for a positive outcome! I was in this position when I was first told my daughter had Torticollis.
There isn't much online, trust me I have searched for it!
My daughter was diagnosed at 6 weeks old. She also had slight plagiocephaly. Flat head to left side.
When she was born we didn't really notice that she only turned 1 way in our case to the left. Luckily our Cranial osteopath noticed a lump in her neck, we were immediately panicked.
Our GP arranged a ultrasound scan at our hospital and it was confirmed as a scm tumor of infancy. An horrendous name to be honest.
Basically the muscle in her neck was either damaged in my traumatic labour or she was squashed in my women during pregnancy. I'm quite small and she was quite big when she was born so both scenarios are likely, no medical professional has been able to tell me for sure
This made her unable to look right and her to have a head tilt. Where the right ear would be lower nearly touching the shoulder.

After this we had to wait a while for physio, our GP surgery was useless. So we initially paid for private physio. But to be honest the stretches are online, so we probably didn't need to but we were just so worried.

The exercises/stretches were difficult, she hated them, and cried and struggled. Was very difficult. But we kept being told the most cases resolve with stretches.
We saw a physio once a month or so for about 4 months. With not much improvement.
Then we were referred to a paediatric surgeon. He said to continue the exercises but with a view to operate.
About 4 months later my little girl is now 1 years old. No improvement really. We really don't know what to do. So on her 1st birthday we had another appointment with the consultant (of all the days to have an appointment!) He gave us the news he would operate. We were both happy and extremely nervous about her having an operation. But it was the only way to correct the tilt and the rotation. It was booked for 6 weeks later.

So now she was 13.5 months old and we went to have the operation. The consultant removed part of the tight muscle. It didn't take long, not nice for me as I had to watch her fall asleep with the anaesthetic.
She recovered really well, hardly any pain.
The stretches became much much easier! As there was nothing blocking her neck. We did the exercises religiously for 3 months.
The difference is amazing!
The tilt is hardly there and she can turn to the right now. The consultant said it will continue to get better naturally as she moves around.

She also did have a slight difference in the size of her eyes and facial asymmetry. This should improve in a few years. But I have already noticed a difference.

So we are now discharged no more appointments, no more exercises.
I can quite believe it's over!

The tilt may come back during illness but will go back to normal after.

We didn't go down the helmet therapy route, but I know some people do.

I really hope this helps someone.

Oh great glad that’s sorted for you!My DS had torticollis following forceps but luckily cranial osteopath sorted it for him.

My DD has just turned 1 and spent lots of her first year in a hip harness for hip dysplasia.

They all have their niggles as newborns but sounds like you’ve had a rough year! Onwards and upwards now!

Hi, my daughter had this, same thing we didn't notice she only turned one way until she was around 6 weeks. She wouldn't feed on the left breast and I just put it down to preference and as she was gaining so well on the right I let the left dry up!
She's recovered ok with physio and has a mild plagiocephaly. She's been discharged from NHS physio now (5 months). We have however noticed that her left eye is noticeably smaller than her right eye. ( Head was tilted and rotated to the left). Did they say that just improves with time. It's always watery and up until v recently quite gunky which I know is common in babies when newborn but this seemed to go on.
She was quite bad but she improved by about 80% after the first physio session and we barely notice it now. Like you said we've been told it can worsen again if she's I'll or tired.
My husband was so stressed about it I'm glad I didn't see your post about surgery before 😃
Glad your baby is better now and thanks for sharing.

I'm glad you got the surgery - it is important that a persistently tight SCM is released before the age of 2, because the consequences of not doing so are facial scoliosis and atlanto-occiptal subluxation. So you definitely made the right decision there. It is rare that torticollis does not resolve with Physiotherapy but when it doesn't, transection of the muscle is the only way forward.
His facial asymmetry will resolve with time and growth. You will have to be patient, because the face and cranial base grow very slowly, but that growth continues throughout puberty and into early adulthood, so there is a lot of time. There is no evidence that helmets speed up this process, and logic tells us a helmet would have no effect anyway since it has no purchase on the cranial base.

@BTVWX If your baby does not yet roll back to belly, you could look into the Perfect Noggin. If you have a Facebook account, ask to join the Noggin Doctor's Plagiocephaly and Torticollis Discussion Board. There is a wealth of information there, from the craniofacial paediatric plastic surgeon who runs it.

Yes my DD too also had this. 10 years later and all she has is a small scar and one slightly smaller eye. Only I notice it because I’m looking for it.

my other two DC had this also but started physiotherapy from birth and avoided any need for surgery. It has been hypothesised by the physio and consultant that my uterus has an odd shape.

@Fucket Actually, the smaller eye is the normal one. The one that looks larger is the one which is 'altered' - the side of the face on the same side as the flattening gets pushed forwards, including the lateral canthus, meaning this eye appears more open. This too will correct with growth.

Thank you both. That's really interesting about the bigger eye being the 'wrong' one.
I'll look at joining that group now.
How long would you continue with physiotherapy for? We've been discharged. From NHS physio, they did very little but this is possibly b cause the private physio had already treated her.
I wonder if there's a genetic element with this as I have quite a marked facial asymmetry, particularly when I smile, and my mother reports that I would only feed from the right breast unless she held me underarm on the left so I was still facing the same way. As I would have been put on my stomach to sleep (old!) Then I perhaps wouldn't have developed the plagiocephaly that seemed to exacerbate the problem?
One of the things that concerns me is that I have lots of problems with the muscle balance in my eyes and intermittent, intractable double vision which the orthoptists have not been able to do anything for. When I noticed how much my daughter would use her eyes rather than turn her head to see things on her bad side it made me wonder if it would increase the risk of her developing similar problems. Lots of wondering!

You need to continue with Physiotherapy until your baby has full range of motion. Usually, this is combined with removal of the side preference. If you ask in the Facebook group, you'll get links with details, but essentially you need to stabilise her torso and then get her to look each way - the head rotation both ways should be equal.
You do not have to stay in Physiotherapy until her head tilt has gone if she has one, because even once the torticollis is resolved, a tilt can remain; this is caused by weakness in the opposite muscle. But you do need to make sure that the tight muscle is fully stretched out.

It is possible that what you describe is ocular torticollis, but that would be out of my range of expertise, so i do not know. You could definitely ask Dr Gary Rogers this though.

I know this is an old post but did you notice if your daughter struggled with rolling etc with the torticollis?

My lo is 4.5 months now and I noticed he only turned to one side when he was about 4-5 weeks old. Mentioned it at his 6 weeks check with both GP and health visitor and they both said he would grow out of it.

His movements are a lot better than they were but he has got quite a flat spot on one side of his head and when he's doing tummy time he always has his head slightly tilted to one side. I wondered if this could be a reason why he isn't rolling yet. I had forceps when he was born so I know it probably is torticollis but we have only just been referred to a paediatric doctor at the hospital. I just hope it's not too late to do anything about it and he doesn't need a helmet.

It's nice to read your daughter's success story, makes me feel slightly hopeful for my little boy.

Hl@NatiBarden97 I don't think she struggled with rolling but all babies are affected differently that have torticollis. Good you have been referred to a paediatric doctor, it's definitely not to late, we didn't start exercise properly till about 4 months or so. We didn't use a helmet, she is nearly 3 now has a slight flat head but you wouldn't notice it. I'm not sure how much they help, but we didn't use one so couldn't give you any information about them.
Unfortunately Gp's and Health visitors don't know much about it so I hear a lot of people that have been fobbed off.
You can answer PM me if you want any more information. Hope it all goes ok.

@lunacat001 thank you for your post, I’ve been doing 6 months of physio for my LO and although it’s better than it was, there is still a huge tilt and I believe he will need surgery. However, the professionals I’ve come across (private and NHS) dont seem to know about surgery for Torticollis. In fact, the NHS tried to discharge us because there is no current ‘developmental delay’ so basically wait until baby is in crisis rather than preventative work. You said you were referred to a paediatric surgeon, who referred you? Should I push this on NHS? Or did you have to go private? And if so could you share details? Thank you!

My DD's sternocleidomastoid tumour and associated torticollis took a full year of physio to resolve. I'd only spotted the lump at 4 weeks and like another poster here mentioned, she was rubbish at feeding on one side which could have been a tell tale sign earlier.

She was 12 weeks by the time the NHS arranged physio and that only happened because I went to PALs at the hospital where she'd seen the paediatrician and said I wasn't leaving until I had an appointment.

Before that though, at 7 weeks, I paid to see a physio privately who gave very good advice about exercises and massaging the lump to loosen it. We did this pretty much every day. I also took on board the advice of sitting on the 'wrong' side of DD to encourage her to look in the difficult direction.

I had no idea until I read this thread that the tumour might have required surgery.

DD is 7 now and apart from having one lazy eye she is symmetrical as far as I can tell!

@GoneIsAnotherSummersDay wow sounds very similar to my daughter. Glad your daughters resolved without surgery.