I have battled with Graves Disease for the past 2...
I have battled with Graves Disease for the past 2 years. It has completely destroyed my self confidence. I would not wish this disease on my worse enemy. I've noticed over the last 2 years that there really isn't a lot of testimony or bloggers on the internet detailing their experience with Graves. So I've decided to use this forum to due just that. To make a very long story short, my eyes have bulged out of my head which has caused me to experience extreme dry eye, corneal damage, and vision changes.
I am scheduled for Orbital Decompression Surgery with Dr. Robert Kersten at UCSF Medical Center. He will be creating more space for my eyes by decompressing the lateral wall and floor of my orbital socket. Additionally, he plans to perform fat removal.
I'm not sure if it was a good or bad decision to have both eyes operated on separately, but the right eye surgery is September 13th and the left will be October 2nd. I plan to update this site with pictures of my progress. I have posted pictures of my eyes prior to Graves and currently. Please share your experiences and ask me as many questions as your heart desires.
Last but certainly not least, please keep me in your prayers as I move forward with my procedure.
Day 1 Post Right Eye OD Surgery
Thank you all for your kind words of encouragement. I was a nervous wreck yesterday to say the least. Today I probably look opposite of what I feel...Great!! I'm in minimal pain and only taking Tylenol. My right eye is very swollen and stitched closed. I don't have the numbness that a lot of bloggers have complained of. I'm glad I didn't wake up feeling hit by a bus. This picture is a hot mess so hold your cookies :-)
Post op Day 11
I can see!!! Thank goodness there is no double vision (just my usual ghosting). Thank goodness I have had NO complications. All of my fears regarding this surgery have been put to rest. Now I'm dealing with being patient and letting the healing process occur :-p 11 day post op and I have minimal swelling and the bruising is getting better each day. I've finished my course of antibiotics and prednisone and require no pain meds. I do have a little soreness and numbness in the front right quarter on my head, but I guess thats normal when you just had part of your skull/orbit removed :-) No numbness anyplace else. Thank God!!!
I feel comfortable going into my next surgery for my left eye. I'm very anxious to not look like a gOoglly eyed emoticon anymore!!
Still seeing improvements. Slowly but surely seeing glimpses of my old self :-) Round 2 tomorrow. Keep me in your prayers.
5 days Post Op 2nd Surgery
I am five days postop my second surgery and I must say the healing process has been much quicker. I think it's looking pretty good. Right now I just have a little bit of soreness when I look to the left and also a little double vision. I think my left eye looks a bit crossed which is causing the double vision but I still have a lot of swelling so it's probably too early to tell.
10 days post op left OD
So I think I'm healing pretty well. The scar is still a little pink and I have dark circles around my eyes but a WHAT A DIFFERENCE!! The only thing I'm dealing with is double vision and a little soreness. I'm hoping the double vision will improve. If not, I could be looking at a 3rd surgery. I have zero regrets :-)
My time off is over
So I've been on leave for both procedures. Total time off has been about 38 days. I finally go back on Monday. There are things about my vision that still are not 100% (ie double vision and a little asymmetry. My Dr and I will be re-addressing those issues in 2 weeks. I am so so happy with the outcome though. I have 2 more weeks before I can hit the gym again. I have been dying to get a run in!
Things that I learned:
1. Be patient and let the healing process take place. Doing too much too fast only extends rehabilitation time.
2. I had 2.5 weeks off after each procedure. 2 weeks would've been sufficient, 1 week would've been pushing it.
3. You absolutely need help after the procedure for atleast 3 days. My husband took great care of me and made sure to keep me on schedule with my drugs.
4. The surgery was not painful for me. The worse pain I experienced was maybe a 4/10 right after the procedure. I took OTC Tylenol most days. I took Oxycodone for the first week just at night.
5. Sleeping with my head elevated helped tons with the swelling. I iced every 30 minutes for the first 4 days then switched to heat as needed. I used frozen peas in sandwich bags for ice. I rotated about 4 bags.
My right eye was more of a complicated case so the healing was longer. But using this schedule, most of the swelling was down after 1 week in my left eye.
Well those are all the tips I can think of right now. If I remember anything else I'll update the blog. Thanks for all of your kind words and encouragement. You have no idea how much that means to me. I feel like I can go out of the house and have people stare at me wondering why my eyes are the way they are....were :-) It is a big adjustment when you're accustomed to looking one way and then everything changes. I just Thank God there is a procedure that can reverse most of the damage.
If I can be of help to anyone suffering from Graves please email me at email@example.com. I've attached my latest progression shot.
7 months post OD
24 Apr 2014
7 months post
It's been a minute since I've given an update on my progress. Last post I shared that there could be a chance for a second surgery to address mild double vision and maybe even a third for some asymmetry. Well Dr Kersten suggested we wait about 6 months to see how things have healed and revisit at that point. 7 months out and my vision is about 90%. I was told that I now have astigmatism so a visit to an optometrist could be worth my while. I only have double visit when looking to my far left and there is only mild asymmetry of my eyes. Overall none of my complaints are serious enough to warrant anymore surgeries!!! I'm so happy with my outcome! There are some things I will probably have to deal with forever due to thyroid eye disease. When I think of how annoying some of those things are, I have to stop and remember the condition I came from to put things back into perspective. A little light sensitivity and mild swelling in the mornings are nothing compared to what I endured before surgery.
I posted my 7 month progress shot. I have received many emails requesting information about the procedure and my journey. The primary question I get is about cost and insurance coverage. My procedure was covered 100% by the US Air Force (I'm active duty). According to the statements I did receive after the procedure, the approximate total cost for both eyes when getting them done separately @ UCSF was $75-80k. I'm sure that cost could decrease if both eyes are done at the same time.
Please continue to email and share your journey. It's always comforting to know you're not experiencing this along. Graves with moderate to severe thyroid eye disease isn't a condition that a lot of people can relate to. I'm always here to support.
1 year Post-op....okay, maybe I'm a little late :-)
I am so happy to see so many people relate to my little blog! I'm sorry I've been horrible with checking the website and responding to comments. However, I've received several emails from Grave Disease sufferers regarding my experience and recovery. Keep em coming people!! Please email me at firstname.lastname@example.org. I love the fact that my story can help someone else get through Graves.
Now for the update! 1 year later I am wearing glasses for the first time!! My vision was 20/18 pre-Graves. I don't know if it's age or the surgery that declined my vision, but since Graves is the enemy the disease get the blame... HA! I found myself a few cute frames and kept it moving.
The mornings are tough for me. I get a lot of tearing, some double vision, and dryness (hince the tearing). I also experience lid swelling from time to time but I notice if I get an appropriate amount of rest the swelling is greatly improved. I still have a problem with light sensitivity. It improved greatly after the surgery but it never fully went away as I hoped.
My lids sit fairly evenly. I notice uneveness that no one else would ever notice if I did not point out. My doctor told me to get over it because it wasn't significant enough to fix :-P
My lids have not retracted behind my eye once since my surgery!! HALLELUJAH!!! That was the scariest part of Graves for me. Every time it would happen I would damage my cornea in some way from the feeling that my eye was falling out of the socket. I am still very nervous anytime anyone touches anywhere near my lids. Hopefully the anxiety associated with that will go away.
I found myself doing the angry Graves frown a lot. To help retrain/relax my muscles between my brows I started getting botox. It has really helped!! I don't look angry all the time.
That's pretty much it! Again, please email me with questions. In the spirit of my OD anniversary I've attached before and after photos. I'm so blessed and I just want to spread love :-)
How can I forget...
I can't do an anniversary update without a silly picture of my in my new glasses...duck face and all!!
Post-Surgery Progress Shots
I originally posted progress shots after my surgery to this blog. When I could finally see clearly again I noticed how graphic they were so I took them down. I've gotten several request about progress shots in my email so I will repost a couple photos. Each collage is over a two week recovery period. I received surgery on my right eye and two weeks later the left. The left healed much faster than the right.