Orbital Decompression Surgery - San Francisco, CA

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!!

Post op day 10 photo

Day 10

Day 19

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 cookma0@msn.com. I've attached my latest progression shot.

7 months post OD

Hello everyone,
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.
Dr. Robert Kersten

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.

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I had orbital decompression (2009) due to Graves as well, was wondering if anyone out there cannot wear eye makeup now. I cannot, my eyes water so bad it looks like I'm crying, so I have stopped all eye makeup. Anyone else have this problem and if so any recommendations?
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I am currently dealing with the same problem and it feels so good to know other people know how i feel about my eyes! I really want to get OD surgery but im scared. And some people have said their eyes go back to normal after a few years but im not sure if i can handle the appearance of my eyes anymore im so self conscious about them and also like how you felt, have no self esteem. Are your eyes not popping out of you head anymore after the surgery is all i wanna know, like from a side view they dont pop out? I just want normal eyes again and im in highschool so its hard to deal with my problem being the only one in the whole school like this. Im a pretty girl but i know this eye thing is making me less pretty than i can be, being normal. You're story helped me understand more thank you, please get back to me if you can!!(:
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You look beaitiful and glad u are on the mend , there is nothing worse than having no confidence and it majes it worse when the problem cant ne hidden i hate social situations for the fear of people staring at my baggy eyelids x
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Thank you for sharing your story. I too was diagnosed with the same condition with ophthalmopathy. After 7 years of my levels finally stabilizing out for a year, I underwent Orbital Decompression with an Endoscopic Approach in March 2013 in both eyes at the same time. Similar procedure, but in addition to the Oculoplastic surgeon working on the decompression, I also had an Otolarynologist who went through my nose and removed the middle nasal concha to create room. After 2weeks of recovery, I had to wear prism in one side because I had strabismus, crossed eyed. I am not sure if this is because of the Endoscopic Approach. 6months afterwards, I had strabismus surgery, which corrected my sight, but it still looks off sometimes. And then in February 2014, I had a third surgery to pull back my lacrimal gland and re-create my eyelids. I am now contemplating my 4th surgery because my lower lids are slightly going inwards brushing some of my lash against my eye. It's been a costly and long recovery, and despite the outcome, I am glad I had the surgery. It could have been worst.
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Im so happy for you I dont knw what its like to be in your shoes however i knw what it is like to feel so bad about appearance. You are beautiful and wish you well. I am in hopes for eye lid tightening im so tired of people asking me am I tired.
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Thank you so much for posting this. It has been very helpful and you certainly look gorgeous now.
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Thank you so much!
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Reading your story has given me hope in my own journey with Graves Disease. I was diagnosed in May 2012 and its been a roller coaster every since. I am now looking into getting my left eye decompressed hopefully very soon. I have an appointment to see my Occuloplastic Surgeon in February; I am looking forward to getting some relief from the issues my eye has caused me. I hope that you're doing well since your last procedure.
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I'm sorry to hear you are experiencing the side effects of GED. If your eyes are as problematic as mine were, please don't hesitate for a second to move forward with the surgery. I know it's a scary decision because it's a major surgery but my quality of life has improved tremendously. I pray the same good outcome for you. Please let me know if you have any questions about the procedure.
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You look beautiful! Wonderful results. Very happy for you!!
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Thank you!
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Hello Cali_Mar congratulations, you look amazing, I read your story and I am so happy for this success, I being dealing with thyroid eye decease since I was 20 years old, so young, I am 38 now, and back than Doctors used to say that there were so many risk with surgery and I had to live with it and is so sad to live with your eyes looking like these , but now I have decided to look for a great doctor that can help me with these problem, but is so hard to find one, I live in southern california, is there any advices you can give me about your doctor I will appreciated, and once again you look great.
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Hi pinky75, I'm so sorry you've been suffering with the side effects of Graves for so long. The surgery is definitely worth it! Dr. Kersten of UCSF was phenomenal! I would highly recommend him. But, if you don't want to travel all the way to the Bay Area to see him, my advice would be to look for an Occuloplastic Surgeon in an university setting. This was recommended to me and I thought that was great advice.
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Cali_Mar, May I ask why it was recommended that you look for an Oculoplasty Surgeon in a university setting, as oppose to someone in private practice, if a reason was given? You look Great! I am so happy for you. Thanks for sharing. BLESSINGS!
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Hello Cali! I want to tell you that you look great and the surgery was a success!I want to ask you to help me as I make my surgery just like you, and I know you understand me best as you went through this! I want to telling me how much it cost operation and other details!You are my last hope, and thank you!MY MAIL ADRESS IS ***@YAHOO.COM

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Hi Ghita, According to the insurance bill, both surgeries cost around $32k each...so if you need both eyes fixed as I did expect the cost to be in the neighborhood of $64k. Please email me at cookma0@msn.com with any questions you have about the procedure. I'd be glad to share my experience with you.
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Hai Cali! ur outcome it's wonderful thank god n Dr Kersten u look very beautiful again!
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Thanks so much Mely!! That really means a lot.
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Oh my GOD! You look so beautiful!! It brought tears to my eyes to ready your last update and see your beautiful smiling face! I could not be MORE happy for you. Thank you so very much for sharing your story because so many people will benefit from it just knowing that there is HOPE for them! You look absolutely amazing!!
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Thank you for supporting me along the way :-)
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You look wonderful! Congratulations!
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Thank you!!
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