# back from the neuro opthamologist



## Prairie Rose (Nov 17, 2011)

Not good news.

My case looks pretty bad. I am to wean off the prednisone and let the disease 'run it's course'.

Go back to the city in 6 months for more measurements.

They really don't know squat about Graves Eye Disease, do they?

It will get worse and I am supposed to let it, then they will re-evaluate and consider surgery. Oh, and I am to call if my vision worsens. Really......


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## Octavia (Aug 1, 2011)

Well, that's not good at all. When you say your case looks pretty bad, what do you mean? And what exactly will happen when the disease "runs its course"? (Whatever it is, I'm surprised that's the protocol...)


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## Prairie Rose (Nov 17, 2011)

Hi Octavia,

Gosh, I am so.....well, upset, surprised, angry, etc.
So not my nature....I am an upbeat, cheeful person.

This Graves stuff (actual diagnosis just over 2 weeks ago for thryoid and eyes), is a tough road.

My eyes have been horrible since spring. I've run to medical and eye doctors. First med was at a walk-in clinic on my lunch break. Allergies, he said, and gave me eye drops. Next I went to my regular eye doctor twice. Allergies, she said. More drops.
I finally got in to my regular MD *he is sooo busy*. He knew immediately my thyroid was goofy. Did an ultrasound, sent me to an endocrinoligist, and endo di a RAI uptake test, then put me on methamizole and propranolol and sent me to a local opthamologist.

The local opthamologiest put me on prednisone and sent me to a neuro opthamologiest in another state....that's where I came home from today.

The docs today told me that there is nothing they can do but get me off the prednisone and let the disease do it's thing. Then they can try to fix me. 
I can't buy that. (though I am sure I was charged dearly for the diagnosis). I am a busy working mom with a full life that keeps me running from the moment my feet hit the floor in the morning.
I have to see.

These docs told me my eyes are pretty bad and will get worse, the retraction is terrible, the bulging and displacement of my eyes is bad, etc.

They want me off that prednisone very soon, and that is what has restored my vision. I had double vision so bad and my eyes streamed all day.

Gah.

I see my local optho on Wednesday and am not stopping any meds til I get more info. I just can't. I have to see.


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## webster2 (May 19, 2011)

Oh, darn....I was hoping you would receive much better news than you did. Are you near a teaching hospital? Could you get a second opinion? It seems such a shame to let your eyes "run the course" and then fix them. Let alone send you back to double vision. I am really sorry to hear this....(())


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## Andros (Aug 26, 2009)

Prairie Rose said:


> Not good news.
> 
> My case looks pretty bad. I am to wean off the prednisone and let the disease 'run it's course'.
> 
> ...


I personally don't think that is a wise thing to do. What is your status w/ the thyroid? If you still have it, you need to have it out and then go back on Pred concurrent w/radiation to the orbits. I had 2000 RADS 3 times a week for 6 weeks.

That stopped it dead. As long as you still have your thyroid, it won't work.

I did have to have orbital decompressions and other surgeries. My case was extreme. Globes were almost completely out of the orbits.


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## I DClaire (Jul 31, 2011)

When I was stricken with Posterior Vitreous Detachment I assumed I'd had a detached retina so I raced off to a popular ophthalmologist ASAP. This doctor told me I had a "stretched retina".

I lived with the understanding I had a stretched retina for probably 6-8 months before something else drove me to see a retina specialist who right off the bat told me there was no such thing as a "stretched retina".

Good luck! Knowing how tired and frustrated I get with my own health concerns with no one to take care of every day except my mother and husband, I'm sure dealing with all this and trying to manage the needs of little children is exhausting in and of itself.


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## Prairie Rose (Nov 17, 2011)

Yes, it is a teaching hospital--the University of Minnesota. 
I see my local optho tomorrow....he simply has got to get me to someone that can help.



webster2 said:


> Oh, darn....I was hoping you would receive much better news than you did. Are you near a teaching hospital? Could you get a second opinion? It seems such a shame to let your eyes "run the course" and then fix them. Let alone send you back to double vision. I am really sorry to hear this....(())


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## Prairie Rose (Nov 17, 2011)

I do still have my thyroid.
I need to do some reading and discussion with my local docs on this...
thank you so much for sharing.



Andros said:


> I personally don't think that is a wise thing to do. What is your status w/ the thyroid? If you still have it, you need to have it out and then go back on Pred concurrent w/radiation to the orbits. I had 2000 RADS 3 times a week for 6 weeks.
> 
> That stopped it dead. As long as you still have your thyroid, it won't work.
> 
> I did have to have orbital decompressions and other surgeries. My case was extreme. Globes were almost completely out of the orbits.


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## Prairie Rose (Nov 17, 2011)

On my gosh....I'm so glad you got in to see a retina specialist!

My kids aren't little (they are teens), but still, they need mom on top of the game! My job is very intensive and I have to be 100 percent. Need that paycheck.



I DClaire said:


> When I was stricken with Posterior Vitreous Detachment I assumed I'd had a detached retina so I raced off to a popular ophthalmologist ASAP. This doctor told me I had a "stretched retina".
> 
> I lived with the understanding I had a stretched retina for probably 6-8 months before something else drove me to see a retina specialist who right off the bat told me there was no such thing as a "stretched retina".
> 
> Good luck! Knowing how tired and frustrated I get with my own health concerns with no one to take care of every day except my mother and husband, I'm sure dealing with all this and trying to manage the needs of little children is exhausting in and of itself.


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## Andros (Aug 26, 2009)

Prairie Rose said:


> I do still have my thyroid.
> I need to do some reading and discussion with my local docs on this...
> thank you so much for sharing.


You are welcome. You cannot control the infiltration to the orbits unless you remove the source of the problem which is the thyroid. That is step one. The eyes then must be treated independently however for once it starts, serious medical intervention is needed.

I am here for you and will help anyway I can. I was through the gamut w/the eyes.


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## Prairie Rose (Nov 17, 2011)

Hugs.

This gamut thing sucks, doesn't it. 

Gah, I so have to hold on to my sense of humor. I have to. 
I'm a tough cowgirl, after all, and cowgirls don't cry. (much). I sure did last night though. The last 3 hours of of drive home I absolutely couldn't stop the tears. I got mad at hubby and BOOM. That is SO not like me. Of course, I found that crying really messed my eyes up.

I can definitely tell I will have to grab hold and be ultra-proactive on this gamut. I am not going to settle for more vision loss if it is avoidable.

Another thing...this being the one that ranks far more in my heart and soul.....my youngest son has a 'condition' that is untreatable. He is very small for his age, always has been. Ran him to doctors from birth on, always told nothing was wrong. 
5 years ago we got to the Shriner's. There is a lot wrong. He has a very rare bone condition. His body doesn't produce enough collagen for his growth. There is nothing they can do synthetically. He will be 16 in January and his hips are deteriorated to those of old person. He faces a double hip replacement after he matures. Always will be very small. Cannot do contact sports, which he lives for. They are also watching an area of bone in his upper back. 
I take him out to the cities to the Shriners in 2 weeks for our annual appointment.

I aim to stay on these steroids til after that, at least. I have to see. I have to function.

Sorry for dumping all of that on you....and thanks again.


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## Andros (Aug 26, 2009)

Prairie Rose said:


> Hi Octavia,
> 
> Gosh, I am so.....well, upset, surprised, angry, etc.
> So not my nature....I am an upbeat, cheeful person.
> ...


For one thing; you never quit pred cold turkey. You need to wean off if you have to do it.

You can also get Kenalog injections but truly, the protocul I outlined is the best way to go.

Also, never ever use OTC eye drop with antihistamine. They make your eyes 10 times worse. I had a wonderful surgeon and he told me this. Use Refresh or similar lubricating drops by day and Lacrilube ointment by night.

Ice down when you can. Be sure to put a soft clean towel over your eyes and then the ice pack. Make sure it covers the entire periorbital area. Raise the head of your bed a few inches so that your head is elevated a bit for less periorbital edema.

You cannot let it run it's course for the optic nerve is being stretched and soon it will be stretched beyond capacity. Not to mention this whole affair is painful and cosmetically injurious to the psyche.

http://webeye.ophth.uiowa.edu/eyeforum/cases/case19.htm


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## Andros (Aug 26, 2009)

Prairie Rose said:


> Hugs.
> 
> This gamut thing sucks, doesn't it.
> 
> ...


Oh, Honey Bunny! You are not dumping. I do not perceive it that way at all nor do others here on this board.

No one could know better than I do about GED. My globes were touching the lens of my glasses and corneas bulged. From the side, the globes looked like teats. I lost vision in the left eye off and on. Thank God it has been restored although much damage was done that can never be fixed.

This is because I was fluffed off and told I was getting old (40??) and what did I expect to happen? Huh? What did you say?

I "am" here for you and so is everyone else on this board although "thankfully" not many have had GED. That is the good news and I hope they never do.

Another thing, you will never go into remission. Temporary, maybe. But for the rest of your life which is my interpretation of "permanent"; I don't think so. It ain't gonna' happen.

Get that thyroid surgically removed. No RAI; it has a tendency to make the eyes worse. And plus, this way the pathologist will check the gland for cancer also.

Many hugs to a real cowgirl who only cries a little bit!










And God bless your son. I know he is a very special young man!


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## Octavia (Aug 1, 2011)

Does your son have OI? I used to work at a Shriners Hospital that dealt with orthopedics...saw several kids with OI.

For what it's worth, I agree with the others here who have suggested not to "settle" for what this opthalmologist has told you.


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## Prairie Rose (Nov 17, 2011)

Andros...all of you....you have no idea how much strenght you are loaning me by sharing your stories and advice.

What am amazing, wonderful group of people.

The caring...I can feel it. Thank you, so very, very much.

I am the one that does the caring....always the strong one, so it is really difficult for me to realize it's my turn to step back. That may well a struggle...

Octavia, Drew's diagnosis isn't a solid term to go by.....
the closest they can name it is --it is 'similar' to SED. Spondilo Epipheseal. We see the Shriners and they also sent us to the genetic testing hopsital. The tests were inconclusive. They think it was a 'spontaneous' mutation occuring in the womb. The genetic testing was not conclusive, either. So, the 'similar to the nature of SED, of a form' is what they are going by.

I have to say, the Shriners in St. Paul are AMAZING. Absolutely amazing. 
Drew's reqest to the doctor when we first met him 5 years ago was, 'can you please make me taller, like my friends?'. The doctor had tears in his eyes when he told Drew he can fix his hips, he can do a lot to help him, but the one thing he can't do is make him taller. He speaks to my son on an even level. He is honest. He is caring.


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## Prairie Rose (Nov 17, 2011)

Oh, and I am so not going to settle with what the neuro opthos are telling me. Nope.


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## Andros (Aug 26, 2009)

Prairie Rose said:


> Oh, and I am so not going to settle with what the neuro opthos are telling me. Nope.


Good; I am relieved to hear this! Glad you feel the caring and love! Mission accomplished. LOL!!

You can tell I am proud of our board and our posters! And if not for Nasdaqphil, the owner and administrator, we could not be here at all. Giving Thanksgiving Thanks for that!


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