Thyroid eye disease (TED) and Graves disease. Part 14. I'm hoping to get approved for Tepezza
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- เผยแพร่เมื่อ 18 ต.ค. 2024
- I was looking at my last youtube video as I was getting this one ready. It seems obvious that my right eye is still getting much worse. In this current video that I'm uploading, I say that the right eye has stayed stable for the last couple of months, but that's not the case. It has clearly degraded in the last month. Anyway.....My appeal for Tepezza is at the insurance company now and we'll see what they say. I really need the Tepezza.
Good to see you Rick. I too have double vision from a crooked eye. I had Severe TED and massive swelling and inflammation. I did 12 weeks of IV Steroid Infusions of Prednisolone. It got rid of all of three swelling but I still have the crooked eye. I go on Thursday to a Pediatric Strabismus Surgeon for a consult. Will keep you in my prayers!
I believe that surgery is in my future. Good luck with that Karla Q. I’ll be praying for you too.
Karla would love to hear how the strabismus surgery goes. I am on the exact same path as you but I am probably 9 months behind you. I will definitely need that surgery.
rick thanks so much for being so open and honest. I developed graves disease in may 2023 and in November 2023 started having double visions. it got worse, so much the prism for glass lens no longer help. I was off the chart. only my right eye is effected and I cannot look up as well. yours looks a lot worse, sorry. I started the steroid treatment and today completed by 8 of 12 weekly treatments. I can tell a slight improvement, I can tilt my head back to balance the double vision. the tilt is less than what I was doing before treatment. a nurse told me that I would not see improvements for atleast 5 weeks. after my 11 visit I will see my double vision eye specials and also my orbital eye specialist. after that I will give you some feed back. will be praying for you. mike johnson Aledo, tex
The "old steroid treatment " (infusions not tablets) helped me enormously. What are they waiting for? Do it! Also Rick have you looked into the Thyroid Eye Disease institutes they have attached to US hospitals and universities there? I think UCLA San Diego has one. You are in an excellent country as far as the best treatment available for this, including surgery. Let me know if you want me to send you the links for the institutes. They are multidisciplinary teams of specialists all specialising in TED. They could really get that eye very close to normal once you finish the active phase.
Hi Rick. Your eyes look exactly like mine do, even in the exact same direction. If you were to get an MRI or CT scan you’d very likely find that your inferior and medial rectus eye muscles are effected (swollen) by the antibody attacks. In my case, Tepezza was not effective at reducing that swelling, nor was the steroid treatment prior to going on Tepezza, and it’s suggested by my very knowledgeable Dr. who specializes in TED that it’s because the muscle scarring is already too “deep”. I’m scheduled for strabismus surgery in July and I’ll be sure to let you know how that goes. Stay tough. I’ve dealt with your level of double vision for just over a year now and I know exactly how challenging it is.
I suspect you are right. That’s why I’m assuming I’ll need surgery at some point. Good luck with your surgery. I hope it goes well for you.