Re: TED -- It seems Orbital Radiation is next:-(

[Guest guest]

Hello Terri,I have been following this thread about your eye problems and

noticed your in the Missouri area.Ive been through allot of the same problems

with severe TEDs,tried the steroids no help,ended up I had Orbital decompression

done in both eyes.2 years ago Drs never felt I was a good candidate for

radiotherapy.Oh well anyway I know your not looking at this surgery as an

option,but I thought you might be interested in the Dr I went to.He was awesome!

he was far more knowledgeable in the thyroid related problems then any Endo I

have gone to to date.This Dr truly helped me.He is in Kansas City at St ph

Health car.Dr White I know hes a ways from Springfield but

in hindsight I would of went to another state if thats what it took to get the

results I got!I wish you all the luck Cheryl --- Original Message -----

From: TrayExo@...

To: graves_support

Sent: Tuesday, June 10, 2003 1:07 AM

Subject: TED -- It seems Orbital Radiation is next:-(

In a message dated 6/9/2003 12:17:50 PM Central Daylight Time,

daisyelaine@... writes:

> If youd doctor is opposed to radiotherapy, other immunosuppressants can

> also

> be used. Colcichine is currently being studied, and pentoxyfylline has been

> shown to reduce soft-tissue inflammation, but not proptosis or

> ophthalmoplegia>>

Well, I saw the eye doc today. Inflammation and swelling are significantly

worse than a month ago, but I could have told him that since I couldn't drive

myself there safely. Overall vision has also worsened. I couldn't read

nearly

the lines I read just a month ago. They didn't even bother with some of the

tests because my eyes were jumping every which way since I came off the

prednisone.

He is proposing Orbital radiation. He said he could send me to Saint Louis,

MO (a five-six hour trip) for a second opinion, but that the specialist there

who deals in orbital decompression surgery would most likely propose radiation

first.

He said there are risks, including damage to the optic nerve and some

permanent double vision, but that the risks were small and the success rate

high. I

go back next week for a consult with the eye doc who actually does the

treatment.

I must say it is very, very scary. I've tried looking up sites with more

information on the exact procedure itself and what I can expect but haven't

found

any yet.

Any input would be much appreciated.

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treated TED with

prednisone.

It worked while on prednisone, but TED came back worse after. Now considering

other options.

[Guest guest]

My ophthalmologist has recommended orbital radiation. He has scheduled me for a

consultation with a doctor who performs this procedure on Monday, June 16th. I

have been reading that the procedure only last 6 months. Does anyone know that

to be a fact. I want to ask the doctor intelligent questions. Anyone out there

willing to offer some questions I should ask? Thanks - Maggie

TED -- It seems Orbital Radiation is next:-(

In a message dated 6/9/2003 12:17:50 PM Central Daylight Time,

daisyelaine@... writes:

> If youd doctor is opposed to radiotherapy, other immunosuppressants can

> also

> be used. Colcichine is currently being studied, and pentoxyfylline has

been

> shown to reduce soft-tissue inflammation, but not proptosis or

> ophthalmoplegia>>

Well, I saw the eye doc today. Inflammation and swelling are significantly

worse than a month ago, but I could have told him that since I couldn't

drive

myself there safely. Overall vision has also worsened. I couldn't read

nearly

the lines I read just a month ago. They didn't even bother with some of the

tests because my eyes were jumping every which way since I came off the

prednisone.

He is proposing Orbital radiation. He said he could send me to Saint Louis,

MO (a five-six hour trip) for a second opinion, but that the specialist

there

who deals in orbital decompression surgery would most likely propose

radiation

first.

He said there are risks, including damage to the optic nerve and some

permanent double vision, but that the risks were small and the success rate

high. I

go back next week for a consult with the eye doc who actually does the

treatment.

I must say it is very, very scary. I've tried looking up sites with more

information on the exact procedure itself and what I can expect but haven't

found

any yet.

Any input would be much appreciated.

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New

flare up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treated TED with

prednisone.

It worked while on prednisone, but TED came back worse after. Now

considering

other options.

[Guest guest]

Hi,

did you look on the eye section in thyroid manager

www.thyroidmanager.org/Chapter12/Ch-12-2.htm

And have you checked Pub Med, http://www4.ncbi.nlm.nih.gov/PubMed/

If you do a search there you'll run across quite a few abstracts, some with

links to the article.

There's also an article on medscape, www.medscape.com

on Graves' Opthalmopathy and/or Thyrotoxicosis from the 12th international

thyroid congress. the 2nd page of the report is about orbital riradiation

Best to you, Elaine

[Guest guest]

In a message dated 6/10/2003 10:44:03 AM Central Daylight Time,

cfriedley@... writes:

> I had Orbital decompression done in both eyes.2 years ago Drs never felt I

> was a good candidate for radiotherapy.Oh well anyway I know your not looking

> at this surgery as an option,but I thought you might be interested in the Dr

> I went to.He was awesome! he was far more knowledgeable in the thyroid

> related problems then any Endo I have gone to to date.This Dr truly helped

me.He is

> in Kansas City at St ph Health car.Dr White I

I've heard of him before. I live in Joplin. Springfield is the closest endo

and the eye doc is also in Springfield. The dr. who does the orbital

radiation is in Springfield. If that doesn't work for me, they said the surgery

would be the next option. So I'll keep Dr. White in mind.

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treated TED with

prednisone.

It worked while on prednisone, but TED came back worse after. Now considering

other options.