Join Now
myjeannie 
11:34pm, September 3, 2009
Yesterday, I just had my one month follow up appointment with my ophthalmologist. I am extremely excited to report that I have had in my doc's words "a fantastic reaction" to RT. My eyes are improving daily. I started noticing improvment in my double vision during my treatments. After the treatments were over, for the next 2 weeks my eyes actually got worse, not much, but worse. I was told this would happen but let me tell you it was pretty scary. I thought, oh know, this is not working, I was getting pretty depressed. My current symptoms got worse and I also got really red, runny, burning eyes. The tearing in my eyes would not stop. But over a few days it started getting better and just began to get better and better. It's now been a month and I can't even try to articulate how I'm feeling. I am ecstatic!! I do not need my prisms for anything!! My double vision has 90% improved. I drive, I watch t.v., I can have a conversation with someone without standing arms length away from them! The ocular motility impairment was so bad that my eyes were cross-eyed and now they are going back to their original position. This is the number one thing that has improved. The puffy eye lids are slowly going down but they are still quite puffy. I have water retention under my eyes which is due to being hypo now. I'm still trying to find my optimum synthroid dose. Another thing that is happening and totally unexpected is the pressure I had in my whole head is going away. I was suffering from severe head, ear and eye pressure, and that is improving as well. No pressure at all anymore in and behind my eyes. I just noticed this morning when I got up and looked in the mirror that my eyes are looking clearer. I just can't believe this! My eyes have been such a nuisance to me for such a long time. I had trouble with them way before graves hit and RAI just kicked started them into bloody high gear. The last time I had clear white eyes, I was probably a little girl. WOW! I am so happy, I am getting choked up. My ophth is so happy for me too. He has been there steadfast with me from the beginning. It is so important to stay on top of this darned TED while in the active phase so you can be helped. It was 9 months from onset when I began RT treatment. I have to see my ophth in 6 weeks and he said that if something goes bad and my eyes go bad the next move would be to put me on a heavy immunosuppressant that they give cancer patients, but he is very hopeful because of the drastic improvement so far. He said that most people with this kind of progress usually keep getting better and better. I will continue to update on my progress. I am going for a drive right now...without my prisms, yeah!!
jeannie :)
Comments
Jeannie: So glad to hear you are doing well! I have changed what I am doing. I was scheduled to have eyelid surgery July 28th with the doctors I had at the KU med center. I tried to talk about OD and they kept steering me away from it. In the meantime I spoke with a doctor at the Shiley eye center in San Diego CA. He disagreed with the surgery order they chose and gave me the name of a ocular surgeon that he knew here to get a second opinion. To make a long story short I no longer have the doctors at Ku med center and this doctor I saw yesterday is doing my OD surgery on August 7th. I am so scared, but know this is what I need to have done...and we'll talk muscle ( if needed)and eyelid surgery later (also, if needed). He said that 5% of patients develop double vision after OD. He can be corrected but I sure hope I escape the 5%. That is the part that scares me about the surgery. But in order to feel better and hopefully go back to looking more like I did before this dreadful disease I am having it done. Please refresh my memory...did you develop the double vision after RAI? Your entry was enlightening, there is a light at the end of the tunnel! I am so happy for you! Kathy (Krygh)
krygh
Thanks Kathy for your support. I'm happy to hear you are seeking out all options and doing lots of research and getting second opinions. Yeah, I can understand how OD would be scary for you but through my research, after OD, if you develop double-vision you can have strabimus surgery. I spoke to a lady that had strabimus surgery done with great results. It was day surgery by her ophthalmologist and she was back to work in two weeks without any problems. Her eyes looked great. I never would have known she had that surgery if she didn't tell me. In answer to your question, for me, RAI was the worst thing I've ever done. The sudden drop into hypo without meds for 2 months kick started TED into high gear. I always had itchy, watery eyes but it wasn't until after RAI that I developed all the nightmare symptoms of TED. Double-Vision caused by the ocular motility impairment, that was pretty severe. If something wasn't done soon it would of progressed for up to another 12 months possibly, then I don't even want to imagine what kind of hell that would of been. This darned eye disease sucks! Again, I am happy to hear about your surgery coming up. Please keep me updated on how your doing and good luck!
myjeannie