I have battled with Graves Disease for the past 2...
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
Post op Day 11
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!!
Post op day 10 photo
5 days Post Op 2nd Surgery
10 days post op left OD
My time off is over
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
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 :-)
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...
Post-Surgery Progress Shots
Dr. Kersten has the credentials that any patient would be happy to see from their surgeon; but it is a pain in the rear to see him for appointments. Be prepared to wait a minimum of 2 hours once you arrive for your appointment. Since he is ALWAYS behind schedule he is not as attentive, explanatory/detailed, or warm and fuzzy as one might want from a doctor. As rushed as he may seem during the appointments, I find that he gave me just enough to make me fully confident that he will take care of me while under the knife. If you are searching for an Occuloplastic Surgeon to answer your million questions and with exemplary bed side manner, he is not the one. If you value the comfort of years of experience/knowledge, I would try him out.