Medical Advisory Board (part 2)-for parents and other health care professionals
As described in the previous post, I have been invited to participate in the Easter Seals Medical Advisory Panel about torticollis. My goal will be to not only inform other professionals about the eyes' impact on torticollis, but also to give advice on treatment options. I've had a lot of parents who’ve been put in tough positions regarding treatment and my best advice to them is to really understand the available options.
For those of you that don't know what torticollis is, again, think head tilt. It is defined as a condition in which the head becomes persistently turned to one side, often associated with painful muscle spasms. Treatment varies on whether an individual has acquired vs. congenital torticollis. Meaning the head tilt is due to something or they just got it idopathically. Idiopathic is just a fancy way of saying I don't know why they got it.
If an individual has congenital superior oblique palsy (an eye muscle problem) they develop acquired torticollis. One eye is higher than the other with this condition and the child will often see double. The easiest way to correct this double vision is for the child to tilt their head. This can lead to developmental problems if not addressed early. Other reasons an individual may develop a head tilt is because of a visual problem called nystagmus or due to possible spatial maladaptation’s. The more difficult discussion in these cases is not identification, but treatment. I would guarantee if a parent sees a surgeon regarding the head tilt, the surgeon will want to do surgery. If a patient sees a therapist, the therapist will want to do therapy. This often leads parents in the middle facing the two recommendations.
My discussion will highlight pros and cons of both surgery and therapy. Although I do have a "dog in the fight" since I do therapy; this was well understood when they asked me to be a part of the program. I think in some cases surgery is a must, however, it may lead to either a worsening of the tilt, a lack of stereopsis (depth perception), or a secondary strabismus (development of an eye turn inward or outward ). Postoperative data suggests if patients have eye surgery there is a 68% "success" rate. These numbers are often masked and as of yet there are no double blind studies regarding the true effectiveness of surgery in these cases. I often ask other professionals and parents to really analyze the data before any decision or recommendation is given.
For example in Residual Torticollis in Patients After Strabismus surgery for Congenital Superior Oblique Palsy (Lau et al, Br J Ophthalmol 2009;93:1616-1619 ) the success rate is defined as 68.8%. If one however reviews the data, only 34% have absolutely no head tilt after the surgery. 31% had a significant head tilt after surgery. The remaining group had a "mild" head tilt. One can play with statistics any which way and say the degree of head tilt is less by this number or that. The reality is that only 1/3 of the patients were "fixed." I use quotations because there is no mention at all of depth perception or binocularity.
Would you have your child's eye cut, muscles cut and eyes altered if you knew only about 1/3 of the patients got better? My intention is by no means to report that an entire profession has it wrong. I just often ask parents to ask themselves about agenda. A surgeon has an agenda. To a surgeon, even if it doesn't work, why not try surgery. If a child has a small head tilt that is getting better with occupational and physical therapy, why not let it continue to get better? Most of the patients I have with a congenital superior oblique palsy develop depth perception. If the head tilt is small and there is a chance of depth perception development, aren't we better off just letting the eyes be? The new rule in strabismus surgery is NOW. Urgency is placed on the situation which is often frightening to parents. What I have told many patients is that there is no such thing as a binocular emergency. If a patient has trauma, an infection or sudden onset blindness those are indeed emergent. Strabismus is not. A head tilt is not.
I hope my presentation and the proceeding discussions will at lease provoke thought. Informed consent is very important. I will often reiterate to parents get the facts, know the facts and then make a truly informed consent. Surgeries go bad and therapy doesn't always work. I've had head tilts get better with lenses, prism and therapy. I've had head tilts not change at all. The only "right" decision parents can make is the decision that they can live with.
