[Anonymous August 14, 1997 at 7:05 am Post count: 93172]

#1054207

How would a person go about finding a local ophthalmologist who
actually knows what GD is and how to examine and treat for eye
complications (in other words, has experience and expertise with
those conditions)?

From my reading, I get the distinct impression that it is not a good
idea to go to just any ophthalmologist. It seems to me that even
people who don’t have obvious symptoms of eye problems should have
their eyes checked out by ultrasound to make sure they don’t have it
if RAI might be in the future due to the possible need for a course
of steroids to avoid RAI worsening eye problems.

The only place I’ve read about so far that seems to have expertise
with Graves’ ophthalmopathy is Mayo. I could see someone flying
there for surgery, but it seems a bit far to go just to be examined
unless one happens to live in that area (unless, of course, Mayo is
the only place that can be trusted to have the correct expertise, but
that seems difficult to believe in a country as vast as the U.S.).

Any help would be appreciated.

[Anonymous August 14, 1997 at 8:40 am Post count: 93172]

#1158138

Given that Graves is a rare disease, and the eye disease even rarer still, finding “local” ophthamologists who have had any extensive experience with it is not likely unless you live in a major metropolitan location, or near a university with a medical school/teaching hospital. In smaller communities, I’m sure a good ophthamologist will know what it is, but most likely will not have a lot of experience treating it. This does not mean that we shouldn’t go to such a doctor — just that we have to be realistic in our expectations about their experience with the disease. A caring, local ophtho would have access to research articles, and could supplement his knowledge by consulting with someone else, somewhere else, if need be.

Treating it: Most of them don’t anyway, unless it gets very bad, especially if it is threatening the optic nerve. This is, in large part, because the treatments known are what I call “draconian”. Large, long-term doses of steroids, multiple,low-dose radiation treatments, surgery — they all have such potential negative side effects, and such limits to what they will predictably accomplish, that unless the eye disease problems are worse than the treatments, most of the doctors I’ve heard of, or talked to, don’t like to start them. At this point in time the doctors do not have any sure-fire way to predict how much impairment will occur before it happens. Having “some” eye symptoms does not necessarily mean the full-gamut of problems will develop. So the “wait and see” attitude seems to prevail. I was referred to an ophtho specialist recently (by my ophtho), and there was no suggestion at this point of even further diagnostic tests (like ultrasound), much less treatment (to which he is adamantly opposed at this time.) All he did was have my eyes follow his pen, as he looked at the degree of muscle impairment. When I asked about early intervention, he responded with the list of negative side effects and said that in his judgment nothing done now would be of much use. It’s frustrating. So, I wait three months, and see him again. I guess what I’m trying to say is that even though I live near a major and well-respected eye clinic, and have access to the specialist, the specialist isn’t doing anything more than my personal ophtho at this point.

Bobbi– Bobbi1436@AOL.com

[Anonymous August 14, 1997 at 9:01 am Post count: 93172]

#1158139

All he did was
have my eyes follow his pen, as he looked at the degree of muscle impairment. When I asked
about early intervention, he responded with the list of negative side effects and said that in his
judgment nothing done now would be of much use. It’s frustrating. So, I wait three months, and
see him again. I guess what I’m trying to say is that even though I live near a major and
well-respected eye clinic, and have access to the specialist, the specialist isn’t doing anything
more than my personal ophtho at this point.

I quoted the above sentences from someone else’s post.

Yes, I’m sorry to say that, so far, what I’ve read about the treatment
of Graves’ ophthalmopathy gives me the impression that it’s a pretty
lame field because the medical community has copped out.

However, since this person is experienced with Graves’ ophthalmopathy,
at least you have reason to believe that perhaps he knows what he is
talking about.

Thanks, Bobbi and Denise, for your information. I would like as much
input as possible on this question. I don’t know; maybe for some people
it is necessary to fly to Mayo. Seems to me that one’s eyesight is
precious enough to go out of one’s way if that is the only way to be
sure that potential or existing problems are being followed correctly,
whether most of the medical commmunity is willing to go out of their
way to treat and research treatments for Graves’ ophthalmopathy or
not.

[Anonymous August 14, 1997 at 11:11 am Post count: 93172]

#1158140

I live in Calif. and my HMO is Kaiser… the Ophtho’s at Kaiser seem to know what they are doing. But, they seem to only have one expert on graves’eye disease
if it had not been for my optho I might not even know I have graves’. My optho is not a specialist but, he does consult with a specialist. What area do you live in? Do you have an HMO?

[Anonymous August 14, 1997 at 9:44 pm Post count: 93172]

#1158141

It’s not easy finding the right Optho. The first one I went to was a Corneal expert at the wonderful Wills Eye Hosp. in Phila. PA. Turns out I don’t want a corneal expert. I want an Orbital expert.The other expert is from the old “wait and see” school of treatment. Let’s see how bad it gets and then we’ll do something. There is a fabulous Optho and Surgeon at Wills eye who is really up on Graves disease. She is getting quite a reputation on the internet.Any one needing a referral in their area can call her 800 number. E-mail me if you are interested. She is one of the few who realized that radiation to the eyes early on will stop the progression of double vision and help the bulging and puffiness. Hey Shannon, good luck with the move. Take care……gwen

[Anonymous August 15, 1997 at 11:57 am Post count: 93172]

#1158142

Send an e-mail to Dr. Nancy Patterson or to myself. We have some doctors who
will refer folks to doctors in their area that are tops in their field.
Sometimes it takes some travel. I go 200 miles to see my eye doctor but he is
the best in the country (according to the whos who of eye doctors in America)
and we can send you in the right direction. The best question to ask your
eye doctor is how many Graves patients do they see. Some see 20 tp 40 a year
while other see 20 tp 40 a week. The second would be my choice.

Jake

[Anonymous August 16, 1997 at 12:14 am Post count: 93172]

#1158143

dear Gwen
i would appreciate the doctor’s 800 number to find a local grave’s ophthalmopathy experts.
i had radiation tx in one eye. now the second eye is beginning to puff
up. my present ophthalmologist said there was nothing more he could do for
me but hold my hand. not good enough. thank you. nat

[Anonymous August 19, 1997 at 11:33 pm Post count: 93172]

#1158144

Hi there
Would love to have the 800 number. Thanking U in advance.
-Brooke-

[Anonymous August 21, 1997 at 12:06 am Post count: 93172]

#1158145

Try calling 1-800-THYROID. This is the number for the Thyroid Society.
They maintain a list of thyroidologists and ophthalmologists who are
experienced with Graves’ ophthalmopathy. Call during CST business
hours.

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