Thyroid Eye Disease - What to Expect

How does the disease progress?

There are two phases. The active phase, marked by inflammation, usually lasts from six months to two years. The focus during this stage is on medical treatment to relieve the eye symptoms. During the second phase, or the stable phase, inflammation and other symptoms have subsided. The patient may need surgery to correct the more visible effects of the disease.

Treatment during phase one, the active inflammatory phase

How can I relieve the burning in my eyes?

It is important to restore lubrication during the active phase. The surface of the eye dries out because the eyelids are tight and do not blink properly. Inflammation may cause the tear glands to produce fewer tears. Many patients say they feel as if a forest fire has raced through their eyes. Liquid teardrops (or artificial tears) offer significant relief. 

Tips on using liquid teardrops:

  • Most patients need to use them regularly—at least four times per day and as often as every hour or two in severe disease.
  • We recommend non-preserved tears. The preservatives used in some brands can lead to allergies or irritation with long-term use.
  • Thicker preparations are available for those who need additional lubrication.
    • Brands include Celluvisc, gel preparations such as Moisture Eyes gel, or lubricating ointments such as Refresh P.M. or Lacri-Lube.
    • Thicker lubricants can blur vision. Consider using them at bedtime and then use your other teardrops first thing in the morning (to wash out the ointment) and throughout the day.

Other tips:

  • Wear wrap-around sunglasses if your eyes are sensitive to light, wind, or other irritants.
  • Try to avoid direct heat or air conditioning, especially while driving.
  • Use additional artificial tears during activities that cause the eye to blink less and become dry, such as computer use, driving, or reading for extended periods.

What treatments are available for advanced cases of Graves’ eye disease?

  • Anti-inflammatory medications—chiefly steroids such as prednisone. To avoid side effects associated with long-term use, steroids are given at higher doses for a month or so and then tapered off.
  • With careful monitoring, a second course of prednisone can be prescribed for prolonged periods of inflammation.
  • Steroids can be injected into the orbit during an office visit. These injections minimize side effects and cause minimal discomfort.

Why are my eyes “dry” when they produce a constant flow of tears?

When your eyes dry out, a reflex occurs, producing massive amounts of tears that flood the eye’s drainage system. The same reflex is observed when you begin to cry after smelling an onion. Unfortunately, your tears provide only short-term relief. As a rule of thumb: if your eyes produce excessive tears, they are probably dry. In dry eye, the outer covering of the eye is sometimes damaged and may be covered with small blisters. Treatments include:

  • Medication to provide moisture, allowing the blisters to heal.
  • A procedure to block the tear drainage system, allowing your own tears to coat the eye instead of draining away. This office procedure is very simple, painless, safe and reversible.

What measures should I take when I can’t close my eyes?

If your eyes remain open during sleep, you may experience severe drying that can damage the cornea. In some cases, the cornea may become ulcerated, resulting in loss of vision. One of the best ways to protect your eyes during the night is to make a saran wrap dressing that serves as a moisture chamber. During your visit, we can show you how to make this dressing.

How can I reduce the appearance of swelling?

Unfortunately, a great deal of swelling accompanies Graves’ eye disease. You may notice bags under the eyes, increased bulging of the eyes, and swelling of the tissue coating the eyes. Anything that increases the fluid in the body can add to the swelling. Some solutions:

  • Reduce salt in your diet to decrease fluid retention.
  • Sleep with your head raised, allowing fluid to settle out of your face. You can prop up your bed by placing bricks under the head of the bed frame.

Will I need surgery?

If needed, surgery is generally performed later during the second phase, after the inflammation has subsided. Surgery during the active phase may be needed in severe cases, for example, when pressure on the optic nerve does not respond to medical treatment, severe bulging threatens the health of the eye surface, or symptoms cannot be controlled with medication.

Does nutrition have an effect on Graves’ eye disease?

Your body is trying to heal itself from a disease that affects many tissues, and we believe that good nutrition, regular exercise, and plenty of rest can help you recover. Also, in several recent studies cigarette smoking has been shown to worsen the disease. If you are a smoker, one of the most important steps you can take is to stop smoking. You should also try to avoid secondhand smoke.

Treatment during phase two, the stable phase, after inflammation has subsided

What are my surgical options?

A series of surgeries can correct the bulging appearance of your eyes, minimize double vision, bring the eyelids into the correct position, and address the sometimes jarring physical changes that come with the disease.

These surgeries are “staged” or performed in a specific order. While some patients may achieve desired results with the first surgery, more than one stage of surgery is usually necessary to achieve optimal rehabilitation.

We recommend allowing two to four months between surgeries. Patients can normally work and return to activities one to two weeks after each surgery.

First stage: minimally invasive orbital decompression surgery

Orbital decompression surgery is designed to remove bone and/or fat from behind the eye, allowing the eye to move back into its socket. The surgery makes more room behind the eye for the enlarged muscles that have developed with the disease. 
Kellogg surgeons are among the leaders in adopting minimally invasive techniques. For less severe cases, your surgeon may use a technique that removes soft tissue or fibroblast-fat. For moderate to severe disease, patients may need bony decompression, which involves sculpting areas of bone that form the walls and floor of the eye’s orbit. 

Surgery can help achieve these benefits:

  • Reduce exposure of the surface of the eye
  • Improve the eyelid’s ability to close over the eye
  • Improve the bulging appearance
  • Relieve pressure-pain
  • Release pressure on the optic nerve, restoring its function and improving vision
Does orbital decompression surgery correct double vision?

For some patients, double vision may improve after orbital decompression. More often, double vision persists after surgery. Many patients go on to have eye muscle surgery, usually two to four months after decompression surgery. In the interim, patching one eye or placing a prism in the eyeglasses will minimize the problem, allowing patients to drive and continue other daily activities.

Second stage: eye muscle surgery

In Graves’ eye disease, scarring can cause permanent damage to the eye muscles. Scar tissue, which forms around muscle fibers, becomes stiff and neither contracts nor relaxes as easily as the muscle it replaces. The eyes may then become misaligned, causing double vision.

Eye muscle surgery can minimize double vision, but may not completely eliminate it. The goal of this surgery is to create a tunnel of single vision, allowing patients to achieve good straight-ahead vision needed for driving and reading. The patient is able to resume many activities, but still may experience double vision when looking far to the right or left.

The surgery is performed on an outpatient basis with local anesthesia. In eye muscle surgery, the surgeon repositions the muscles, bringing the eyes into alignment. The incisions are hidden. In approximately 5 to 10 percent of cases, more than one surgery is needed to achieve satisfactory alignment of the eyes.

Third stage: eyelid repositioning surgery

Often in Graves' eye disease, the eyelids open too widely. This accounts for the staring appearance associated with the disease, and it causes the eyes to become dry. The opened eyelids give an unnatural appearance to the eye; and because the disease often affects each eye a little differently, the eyelids can become asymmetrical. Occasionally the opposite problem occurs and the eyelids droop.

Eyelid repositioning surgery is carried out under local anesthesia on an outpatient basis. The surgeon releases eyelid muscles or tendons that have become tight, allowing the eyelid to return to a more natural position. Sometimes, particularly in the lower eyelid, tissue is added to reinforce the newly relaxed tissues.

Fourth stage: surgery and sculpting to correct the effects of Graves’ eye disease

After these corrective surgeries have been completed, our patients often discover that Graves’ eye disease has left its mark. Loss of elasticity and puffiness are now permanent features, and the tissues around the eye appear to have aged dramatically.

Once the inflammation has resolved we can address some of these changes with surgery aimed at aesthetic reconstruction, especially in the soft tissue around the eye. Swollen and puffy tissue can be treated with sculpting surgery such as blepharoplasty (eye lift) or facelift surgery. The loss of the skin’s elasticity can be treated with laser resurfacing and injections such as fat or Restylane.

The course of Graves’ eye disease is challenging, and it is not unusual for patients to feel discouraged and emotionally drained by the physical changes that accompany the disease. We find that patients who decide to pursue this fourth stage—aesthetic rehabilitation—are some of our most grateful patients.

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