ocular torticollis

Health & Medical Eyes & Vision
1

I wanted to ask anyone if they had any experience with ocular torticollis. My son has been diagnosed with torticollis since he was 4 months old. He has been going to PT since he was 8 months ols, and also OT once a week. He is now 18 months old. He has seen a neurologist and an orthopedist. They had done x-rays and other tests, but they can not find a reason for his torticollis. It's very minor, and he can straighten his head when he chooses to, but it has caused him to become unbalanced. He seems to have very little trunk muscle, so he falls easily and has been behind developmentally ever since.

I read about another form of torticollis online caused by a damaged nerve in the eye, cauing blurred vision. I was wondering if anyone has dealt with this, and what experiences or advice could you give me with this.

2

Hi Angela,
This sounds like the perfect question for a Behavioral Optometrist.

T

3

Hi there,

While I don't have any direct experience with torticollis, I did recently see a show on TLC called Mystery Diagnosis that had a little boy with the exact same problem your little boy is having. For months, they could not find out what was causing his torticollis, and he seemed to be getting worse until they finally took him to an opthamologist who did indeed find that his head tilt was caused by a damaged nerve in his eye. Once he had surgery to correct it, his head tilt went away completely. I think a visit to an opthamologist would be a good idea, if for nothing else than to rule out a damaged nerve as the cause. Best of luck to you!

4

Hi Angela!

Have you tried getting him adjusted by a pediatric chiropractor? Torticollis usually responds really well to an adjustment or two, (pediatric adjustments are NOTHING like an adult adjustment). However, some young children will relapse each time they hit a new milestone, and then need another adjustment. Not sure why that happens, but it's easy to address. To find a pediatric chiropractor, you can go to www.icpa4kids.org~ they are an organization that trains chiropractors specifically for pregnancy and pediatric care. They also will likely have articles available regarding torticollis and pediatric chiropractic.

Hope that helps!

~Jenny

5

My oldest son, now 9, was diagnosed with torticollis when he was around 2 months old, I think. He'd had a hematoma on his neck and we think that's what caused it. We went to PT and it helped. We then moved cross country. No one told us to continue the exercises or to keep an eye on it. We thought he was fine.

Moved back cross country and noticed that his head was kind of tilting and took him to the doctor. He had more PT (if you can call it that). The PT saw himn 3 times and showed me exercies to do at home instead of going there and doing it there with someone who knows what they're doing (besides with me being in school and working, it was hard to get it done at home and him not wanting to do them.) We ended up not getting enough PT time in.

He saw a pediatric opthamologist and it wasn't his eyes.

Saw a couple of more doctors at PHX Children's Hospital. One wanted to do Botox. That kind of scared me. The insurance would cover it in such a young person.

He then saw an orthopedic surgen, Dr. Wu in Phoenix. Excellent doctor. He did end up having surgery when he was 6 to release the neck muscle. We did do more PT (we found an excellent PT in Goodyear, White Tanks Physical Therapy, Cory. They're not a pediatric PT (we did that at PHX Children's, really hard to get in that's why I found White Tanks and they're closer, even though their PT was good at PHX Children's; they're not the 3-visit one, that's yet another one) but Cory is great with kids and knows how to get them to do the exercises) but the muscle was too fibrous by then and it didn't help very much.

Dr. Wu released the neck muscle and then we followed up with PT with Cory and now his head is straight. His eyes are a little uneven and his ears too from having his headed tilted so long. The were even with the head tilted. Every once in a while I catch him tilting his head and I remind him to straightne it. Part of it is muscle memory, so he just has to practice keeping his head straight.

I'm thinking if we had known to keep an eye on it more, not think that the PT when he was a baby fixed it, and found better providers earlier that maybe the surgery could have been avoided. Who knows, but now he's fine.

His torticollis wasn't due to his eyes, but that's our experience with torticollis in a nutshell. (We went to a pediatric opthamologist on Bell Rd. around 59th Ave., I think. Not too far from Arrowhead.)

Let me know if you have any questions or need phone numbers for doctors or PT or anything else. Good luck.

6

Have you considered tonal chiropractic? It gets to the neurological basis for treating conditions. Definitely something worth researching. Torticollis can have an underlying neurological cause.

7

Hi There,

My nephew has Torticollis and the best place for help is an osteopath. They work with the subtle nerves and muscles and can realign the wee ones body. It doesn't hurt in fact it's quite relaxing. If you are in Tucson go see. Dr. Theresa Cisler, She is wonderful ALSO please tell her I referred you, Sharon Silver from ProActive Parenting.

If you are in Phoenix, email me and I will share the name of someone up there. My email is
sharon@proactiveparenting dot net.

8

Hi ANgela, yes I have heard of this. I am a Physical Therapist and a patient of mine had a similar problem. You can test this by placing a patch over either eye (at seperate times) to see if this improves his torticolis. I am sure your nuerologist has tested this as well. But it is something I have seen in the past that mimicks torticolis and imbalance. Good luck.

9

This may not address your original question, but if he is getting developmentally behind, depending on his amount of delay, you may want to check out AzEIP to see if that would be helpful. Your pediatrician should be able to give you guidance on that.
AzEIP is Arizona's Early Intervention Program. It is designed to meet the needs of kids who are developmentally delayed. The criteria is very "narrow" (restrictive to qualify for) and your child needs to be about 50% delayed in one or a combination to two life areas.

10

Hi Angela, my husband and I own an optometry practice in Gilbert..Carlsson Family Eye Center and I asked him your question...this was his response. hope it helps..

It could be due to a nerve palsy controlling eye movements in one eye.Usually an inferior oblique or a superior oblique palsy is the cause ofocular torticollis since the patient tends to tilt their head to one side torelieve the diplopia they're experiencing as a result of this eye musclepalsy. I can't say for sure this is the reason for the torticollis, but itis something I would definitely look into for a diagnosis. Prism in glassesalong with vision therapy could be used to help relieve the condition ifindeed the eye muscle palsy is the cause of the torticollis. Hope thathelps, Dr. Carlsson

11

Hi. I have ocular torticollis related to eye muscle palsy and can share my experience.

It is unfortunately fairly often that this problem gets misdiagnosed and doctors think there is something wrong with the neck spending money on physiotherapy that only addresses the symptoms not the cause.

Quite often the problem are the eye muscles - actually one partucular muscle. As Anne says it is most often the superior oblique muscle palsy. In this case your son might have a squint of a particular type, "vertical" as opposed to horisontal, which is not as easily detectable and is hidden by the tilting of the head whenever a person cannot align their eyes and starts seeing double.

Vision therapy for this condition might help, but mainly since this particular muscle is difficult to trin, most often surgery is your best bet. I would advise you see a pediatric ophthalmologist to get a proper diagnosis. They should do something called a Bielschowsky head tilt test to affirm a diagnosis of an superior oblique palsy.

All the best,
Kes

12

I just came across your post and it is from 2009, so you may have found answers by now. I too have been dealing with torticollis with my son since he very small. We first noticed with his head tilt but he has always had a lazy eye. We saw a Chiropractor often, which helped, kind of. Most eye Dr.'s said he would outgrow the lazy eye and his vision was just fine. He is now in first grade and was struggling with reading, covering one eye when he read and hating reading. We finally saw the right eye Dr. that found out he doesn't see well out of his left eye. He tilts his head to compensate to try to see. So his torticollis was never in his neck, it has always been a vision thing. He has Occular Torticollis and was a little far sighted. He got glasses to help see close up and we are seeing a specialist to see what they can do to straighten out his left eye. Maybe eye surgery on his ocular muscle. your situation sounds like a vision thing.....make sure you see someone that specializes in ocular torticollis....but I would per sue his vision. Good luck.