[saltzman18]

#1169714

I had the four decompression’s due to the optic nerve being compressed and just not enough room in the eye sockets. Two on each eye and probably one more in a month or so to give room to do the muscle surgery for my double vision.

[hope1]

#1169715

You have been through alot. I had my decompressions done at Michigan. The eye that was the worse, is still uncomfortable. I have a feeling of pressure on the side of the nose. I am only 27 days out from the first procedure so I had hoped this might resolve. It has become a little better over time.

I asked you so many questions, because I am scheduled to go back to the Kellogg Eye Center in March for the eye muscle surgery. At this point, I don’t know if I need another decompression-I would proceed with it if necessary. I don’t however, want to get out of order with the surgeries and have to redo procedures. I am up to five surgeries with still more to go- want to be careful.

The doc who did my decompressions is out of town when I have the eye muscle surgery so no chance for a consult. Based on your experience, I might ask to see another doc there for an evaluation. I have a tendency to always want to move forward- perhaps too quickly- and am pretty eager for resolution of the double vision.

[hope1]

#1169716

Checking back in after a long time away. Four years with Graves and it does get much better-just not perfect.

I chose the user name “hope” when I first started posting several years ago. I want to impart the message of hope to each of you as you shared with me. I have had nine surgeries at this point. My eyes were affected by the disease to the extent my left eye “fell out”-spontaneous globe prolapse. There is another medical term for the condition as well. I remember that moment and the others-I was cleansing my face when the eye “popped” out. I laughed for a half hour (and it does hurt). I thought “what else?-bring it on”. Calmly pushed the eye back in . I can handle this. Humor carried me more than once. My work at a non for profit also helped move me toward recovery. Tackling this disease requires finding those tools, relationships, to help you move forward. Different for different people.

I was stared at, remarks were made, people turned their glance away from me and could not make eye contact. I work in an political environment-contact with legislators, large health care systems etc. I had to “reach deep” and I stumbled more than once. I worked with patches on the eyes for months. Worked longer hours to read than I should have as I could not see worth a darn. Fatigue was rough. Husband loved me but the compliments re my appearance came to a halt. I was no joy to live with.

Some of the nine surgeries (for me) were simple like removal of the thyroid. The facial reconstruction and eye surgeries (some) were tougher. One of my surgeries was about 7 hours with a fair amount of pain.

I owe a debt of gratitude to the entire team at Kellogg Eye Center in Ann Arbor. They gave me my life back and my vision. Dr. Douglas, Dr. Archer, and all the staff on the team at Kellogg are the best of the best. My confidence in this team is unquivocal. By the time I got to Ann Arbor-much of the damage was done. I feel I have the best possible outcomes-and then some-that could have been achieved. I count them as my friends.

One eye still does not close completely and my thyroids levels like to move around. My primary care doc feels another autoimmune disease is beginning to present-I don’t know about this. I do know more now to make the right medical decisions for my future and have a great medical team. (This took a heartbreakingly long time to find.) The information many of you have provided was great help.

There is not an “end” in sight. Rather-I chunk it out and take it one issue at a time. My quality of life is all the sweeter for the adversity. I wish all of you a safe journey as you tackle this disease. Bless and Hope (the name of my Golden Retriever who hopes for a Milk Bone each day but has a bit of a weight issue).

[Kimberly]

#1169717

Thanks so much for the update, hope1 – wishing you all the best on your journey as well!

[Gabe]

#1169718

Thank you…my gosh you’ve been thru a lot….can’t imagine having your eyeball fall out of your head. I gasped when I read that. I’m new to this so updates from veterans such as yourself are very powerful. Thanks for sharing and I wish you the best!

Karen

[PattiMeg]

#1169719

Dear Hope,
What a story. Reading it brought tears to my eyes (or should I say more tears since thanks to TED my eyes tear constantly). I really loved your comment about adversity and how it sweetens your life. This TED stuff is absolutely awful – physically, emotionally, professionally and socially. It sounds like you have embraced life and decided to take it one chunk at a time. This is the point I am at in my own life with this disease. I am a hospice nurse, and so I have seen how bad it can really get. When my friends tell me that they are praying that my TED will go away, I ask them to pray for acceptance instead. My life has been wonderful and I believe it will continue to be so. I have a new normal now and it is OK. The truth is we are not these physical bodies, these swollen and teary eyes. We are much more then that and these are the eyes through which we get to see this beautiful world. All the more reason to take good care of them.
Hope! what a beautiful name. Today I really needed to hear what you had to say. Thank you.
Patti

[Raspberry]

#1169720

Hope1, your incredible bravery is really inspiring. Sometimes I get scared at what I’m dealing with and then I read stories like yours and feel inspired to find my courage and face all this with more resolve. I wish you ever increasing healing!

I looked back in the history of your story a little bit and was wondering what ever happened with your thyroid? Did they miss part of it in the original surgery and that’s why you remained hyperthyroid? Did you have to get a TT done again?

[Ann1960graves]

#1169721

Wow the stories. I’m so sorry. GD is very misunderstood by the public. I never knew about the disease until I got it. My husband is a physician and even he is in the learning curve with me.

Did you go a long time before being DX with GD?

When being DX with GD should we automatically make an appt with an OD? I’m worried. My eyes hurt behind the eye socket.

Good luck.

[Kimberly]

#1169722

@Ann1960Graves – The good news is that the vast majority of Graves’ patients will NOT have the worst of the eye complications. However, since you have some milder symptoms, it certainly wouldn’t hurt to get in to see an experienced ophthalmologist just to get some baseline tests done. Take care!

[Author]

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