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#1018966

by CindyBrock61 on Sat Sep 19, 2009 12:13 pm

I don’t even know where to begin. My mother (who is 79 now) was diagnosed with Grave’s in the 60’s. She had the RAI treatment and has been on Synthroid for I don’t know how long. Her "bulging" eyes have never bothered her. In fact, as a nurse, she has been able to share her condition with others and offer encouragement, etc. The woman is a saint!

For the past at leasts 6 years, she’s been seeing an eye doctor who – I just discovered after reading her medical records – has NOT been helping her. He keeps saying it’s not this, it’s not that. Finally, on his last entry a month ago, he put a comment about Hyperthyroid Eye Disease. My mom also mentioned on her last visit that the doctor said something about compression. But, that’s where it stopped. This man – and I’m using that term loosely – never even referred her off to an endocrinologist during all this time. For that matter, neither did her personal doctor! ARGH! ARGH!

I’m a professional writer so research is my middle name! Thus, 3 days ago I began researching on my own. After reading all that I have, I am 100% certain my mom’s eye issues – e.g., worsening blurry vision – are because of her Grave’s and optical nerve compression. I am taking her to a new eye specialist on Monday. (Just so happens I found this eye specialst on the internet and when I called her office, her office manager is a woman I went to Jr. High and High School with! Praise the Lord!)

My mom suffered two small strokes early last week and fell and broke her hip. So, right now she’s sitting in a convelesant hospital recovering from the hip surgery having some memory "hiccups" and obsessing about her vision problem. (My Aunt, who’s a nurse, said after a stroke patients who have visual issues have a tendency to believe they are far worse than they are.)

My parents have traveled by RV my entire life (and I’m 48). In fact, up until 2 years ago, they were still actively traveling. However, with little to no vision, traveling is just not in the game plan any longer. I am torn between ANGER and DEVASTATION as what has happened to my mom. This woman had 2 children die in infancy, adopted my brother and I and (along with my dad) has given us a wonderful life. She has done nothing but help the world, putting her needs behind everyone else’s.

In my gut, I know that my mom’s eyesight can be helped with optical decompression surgery. No matter where my dad and I have to take her (even the Mayo Clinic in Minnesota), no matter how much it costs, we will do anything and everything to get her eyesight restored!!

I am so grateful to have found this web site and, after reading a large number of posts, feel more encouraged that my mom may be able to see better.

Hi Cindy,

I pulled this post out of the Graves’ Eye Disease topic so it could start a thread of its own.

There are a couple of things in your post that I can respond to. First, if your Mom had RAI at one point and has been managed on synthetic thyroid hormone since, then she hasn’t needed an endocrinologist to help with her eyes. Thyroid Eye Disease (we refer to it as TED, doctors may use that term or Graves’ Eye Disease) is a related, but separate disease that requires its own treatment by an ophthalmologist. NOT an optician, an ophthalmologist. TED is a disease that has a well-defined disease curve ~ a "hot phase" that moves into a "cold phase," then no further changes occur and surgical corrections can be considered. The hot phase can last anywhere from 1-3 years, and the cold phase can only be diagnosed in retrospect, when at least six months have passed and no further eye changes have occurred, meaning no increase or decrease in the bulging. So if she’s been seeking out treatment for six years, IF it were TED in the first place, that would strongly suggest she’s well into the cold phase and changes should not be continuing. Please understand that it really may NOT be TED, and the most important thing is to discover what really IS happening.

Optical nerve compression is EXTREMELY serious. It can lead to a complete loss of sight. I can’t say whether or not that’s what’s happening with your Mom, but I can say that an ophthalmologist is your very best resource to find out.

[npatterson]

#1068159

Cindy,

My two cents: When you call about an eye doctor, make sure that they deal with Graves’ disease. Neuro-ophthalmologists are one set of doctors that assuredly do deal with it.

Your mother sounds like a wonderful woman. Let’s hope something can be done–soon. Please keep in touch.

Take care,

[mamabear]

#1068160

I will not comment on the name that is most suited for the dr. you mention . I am no saint so I will bite my tongue.

God has obviously been watching over your mom and has sent her YOU to help her. Had you not looked at her records you never would have known. What a good choice she made when she CHOSE to have you and your brother. What a difference it meant to you to have a mother and what a difference it would make to her now that the baby she picked would fight for her mothers life with no mention of anything in return because her love was enough.

May God keep you strong so you can help her and treat her as she should be treated! Sometimes I can’t help cry…. this is one of those times.

I have nothing to add about TED but wanted to say good luck and hugs to you mom and dad!

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