[PSylo]

in reply to: Methimazole trigger Graves eye? #1183393

Hello,
I haven’t been on this site for awhile. I am a 55 yr female with TED. I’ve spent the last 2 years learning as much as I could to minimize my risks with TED. Long story short……
I was told for many months that I just had allergies, until my eyes were so painful, bulging, dry, eyelid retraction, double vision and not to mention down right scary looking. The whole ordeal really tested my ability to cope with the cards that I had been dealt. But… the good news is after finding a wonderful ocular plastic surgeon/ophthalmologist (who does specialize in Graves Opthalm) at Wills eye hospital, my spiraling life seem to have some ray of hope. I had been to Dr’s at Johns Hopkins and Wills Eye in Philadelphia and finally found the Dr. who helped me with my TED. I was told by many Dr. that I had to just let the TED run it’s course. I could not accept that answer. My Dr and I were very proactive to minimize the outcomes of this disease. I did radiation treatments and injections, in order to, again, minimize the effects. Once able, we did surgery to reconstruct the eyelids. I was one of the lucky ones, and I did not need decompression surgery.

I did not know that I had Graves until I had the eye issues – I to take methimazole, after being diagnosed with TED (actually stopped for awhile due to remission). Please now that I am only giving you my story and what I did.

Graves eye is ‘simply another disease. Another place to gather research is the Kellogg Eye Center with Michigan University – Dr. Raymond Douglas

Educate yourself and be proactive. Good Luck

Pam

[PSylo]

in reply to: Anyone with TED 12-18months and considering or has had OD surgery? #1177226

I am just going to throw in my 2 cents on steroid therapy. My Dr. has been treating me with steroid injections into my muscles around my eyes. It has been extremely helpful. It has releived the pain, reduced the swelling significantly and releived some pressure. However, this is just a fix until the disease is inactive. It does though minimize the potential damage until your disease is inactive. Hence, I am going to try the low dose radiology therapy for ten days, with the hopes of going into Phase 2.

Thank you all for your feedback. I will keep youposted on my progress.

Thanks
Pam

[PSylo]

in reply to: Anyone with TED 12-18months and considering or has had OD surgery? #1177214

Hello,
Thanks for sharing your stories! I am at the beginning of the long journey. I am lucky enough to be with Dr. Mary Stefanyszyn at Wills Eye Hospital in philadelphia. My question to both of you…. The doctor has suggested the Radiology therapy to “put me in stage 2” quicker and minimize the damage. I am currently at 23/24 and was diagnosed last August. Did either one of you have the radiology therapy? What are your thoughts? I am currently on my second steiod injectoin into the muscles, which has really helped with the swelling and discomfort of my eyes. The steroids have also assisted, at the original visit I was at 24/25.

Thanks so much…
Pam

[PSylo]

in reply to: UPPER EYELID SURGERY TODAY #1174198

Robboford,
I am still trying to understand the TED. My graves disease started with issues with my eyes. My endo and opthamolgist, both say that they have seen worse and that we will have to wait and see.
Everyone seems so vague and that there really is not anything we can do.
I was just placed on meds for hyperthyroid (Sept 7th)
Any words of advise or enlightenment? Is there a possibility that my eyes will go back to normal…????

Pam

[PSylo]

in reply to: RAI or Surgery? #1173004

Could you explain further , what you mean by eye concerns. Did you have the eye issues prior to the surgery?

I currently have the eye issues and am trying to understand and learn as much as I can.

Thanks so much
Pam

[PSylo]

in reply to: UPPER EYELID SURGERY TODAY #1174188

Shirley,
I hope the procedure was a success and that you are recovering! I will be looking forward to hearing good news from you soon!
Pam

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