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Boston Children's Hospital's ophthalmologic professionals have many years of expertise treating Duane syndrome and related conditions. We use minimally invasive techniques—surgical procedures that involve small incisions and miniaturized hooks—whenever possible.
The exact course of treatment will be determined by:
Is treatment for Duane syndrome always necessary?
No, not always.Many people with Duane syndrome don't have any symptoms that interfere with their day-to-day lives. There is no obvious misalignment of the eyes, and patients may be able to compensate for their lost or reduced eye movement with just a slight head turn. These people may need nothing more than long-term monitoring by their eye doctor.
When might more involved treatment be required for Duane syndrome?
Patients whose symptoms are more severe—for example, people with a serious degree of eye misalignment, or those who can't see normally without turning their heads to the side—may need eye muscle surgery. Though no surgery can fix the improperly developed cranial nerve that is causing the limited motion in the eye muscle, doctors can use surgery to reposition the other eye muscles—allowing them to work better and keep the eyes in better alignment.
Your treating clinician will work with you to determine the best next steps for her particular circumstances.
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Eye muscle surgery can be a very helpful treatment option for people whose daily lives are significantly disrupted by Duane syndrome. Though surgery cannot cure Duane syndrome itself, since it can't repair or replace the cranial nerve that causes the limited eye movement, it can:
Will anesthesia be required for eye muscle surgery? What are the potential risks of going under anesthesia?
Most likely, yes; strabismus surgery usually is performed under general anesthesia. Patients and parents sometimes worry about complications from anesthesia. However, it's important to know that anesthesiology techniques have advanced a lot over the last 10 to 15 years, and Children's is home to world-renowned anesthesia experts. It is extremely rare for a patient to have any complications related to anesthesia.
What happens during eye muscle surgery?
Once the patient is asleep:
(Don't worry – despite what you may have been told, there is no need to remove the entire eye to perform this surgery!)
You can watch Children's doctors performing eye muscle surgery for Duane syndrome in a special webcast.
What are adjustable sutures, and how are they used during eye muscle surgery?
When a patient is asleep during surgery, an ophthalmologist can't always tell that the eye has responded to the repositioning of the muscle in the precise way expected. Once the patient is fully awake, the doctor may discover that the eye muscle needs to be repositioned.
Here at Children's, we address this problem by using adjustable sutures. An adjustable suture is a kind of “slipknot” that holds the muscle in place. Adjustable sutures allow our ophthalmologists to readjust the position of the eye in the recovery room after surgery—avoiding the need to schedule additional surgery. While many (though not all) centers offer adjustable sutures to adults, only a very few centers, including Children's, have worked out the procedures for using adjustable sutures in children. Watch the adjustable suture technique in action at Children's.
What about transposition surgery? I've read that the “vertical rectus transposition” is the best surgery for Duane syndrome.
Our doctors at Children's are well familiar with the potential benefits of transposition surgery for some patients with Duane syndrome. At many centers, this involves moving both the upper (superior rectus) and lower (inferior rectus) muscles over to the side of the weak muscle. In some patients this can improve the movement of the eye more effectively than surgery on only the horizontal muscles. We have recently published a technique in which only one muscle, the superior rectus muscle, needs to be moved in order to gain the benefit of the transposition. This procedure can be combined with an adjustable suture to fine tune the alignment after the patient recovers from anesthesia.
Will more than one eye muscle surgery be needed?
Adjustable sutures allow us to send most patients home with their eye alignment where we want it to be. However, it's not always perfect. As the eye heals, the muscle may not reattach with the normal strength or location, allowing the eye to drift one way or another.
About 10 to 20 percent of patients will need more surgery within three to six months of the first procedure, depending on how the eye heals. When surgery isn't completely effective the first time, we wait a few months, reassess the alignment and then go back and try again. It is very rare that we can't correct the eye misalignment in a subsequent operation.
Is eye muscle surgery to treat Duane syndrome considered a “cosmetic procedure”?
Parents, other family members and friends should understand that Duane syndrome is a medical disorder—often involving serious double vision and a painful, cramped neck posture—that can and should be treated. Treatment is not a matter of vanity, but rather, a reconstructive medical intervention.
Will insurance companies cover surgery for Duane syndrome?
Most insurance companies do cover eye muscle surgery, because Duane syndrome is a medical condition that causes functional disability. Some programs require pre-authorization, and some programs may initially decline if they are not educated about the reasons for surgery. In these cases, Children's will contact the insurance company directly. Nowadays, it is very rare that an insurance company won't pay for this surgery.
What are the risks associated with eye muscle surgery?
The risk of the eye being damaged during surgery is extremely low. Occasionally, scarring of the white part of the eye (resulting from surgery) creates a lingering problem—however, this is also rare. The main risk is that the procedure may be ineffective, or overly effective (causing the eye to go in the opposite direction.)
Overall, eye muscle surgery is safe and usually very effective. We always encourage our patients' family members to discuss possible risks associated with surgery directly with their treating doctors.
What should we expect after eye muscle surgery?
Following surgery, there will be some discomfort and blurred vision for at least a few days. The sutures, until they dissolve, might also create some irritation.
Generally, our ophthalmologists ask patients to avoid immersing the eyes in water and to use some eye drops for a week following surgery. Some patients are back to school and normal activities a few days following surgery; others may need a week, or a little longer, if they have any lingering double vision or unusual discomfort.
Redness in the eyes can take months to completely resolve, yet usually gets a little better every day.
Read and download the Children's Department of Ophthalmology guide to eye surgery (.pdf file).
Where can I learn more about Duane syndrome?
Children's doctors have written a chapter full of technical detail about Duane syndrome and related disorders, with regularly updated information about genetic testing as well. This material is available for no charge at GeneReviews.
You can also see a panel discussion and presentation of a Children's patient with Duane syndrome who was treated with adjustable suture surgery and a superior rectus transposition.
Get to know some of the patients our Department of Ophthalmology has helped over the years.
When a child has a complex health condition, the family is faced with many concerns and questions. Not only must the family focus on meeting all of the child's medical needs; there is also a significant emotional and psychological challenge that can affect every member of the family.
In addition to the clinical information offered on these pages, Children's has several other resources designed to give families comfort, support and guidance:
View a general guide for Children's patients and their families.
Please note that neither Boston Children's Hospital nor the Department of Ophthalmology at Children's unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.
Helpful links for parents and families
Helpful links for teens
Helpful links for younger children
Read and download the Children's Department of Ophthalmology guide to eye surgery (.pdf file).
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