I just returned from my appointment with the oculofacial surgeon who is going to perform my orbital decompression. This was only my second appointment with him, but he had a chance to review my MRI (from this July and last July), lab work, visual field test results (every other month since last July), and other measurements. He is confident that I have been in the cold/inactive phase since October, and wants to move forward with OD. At first, he told me a fat decompression would provide the best results with the least chance of double vision as compared to a bony decompression. Then, he reviewed my photos from my pre-Graves era and decided I would need a much more extensive surgery (bony OD) to look like my old self. I was prepared for this. I always had deep-set, small, squinty eyes and that's why when some people see me now who didn't know me before TED, say I look fine or that I have pretty, big eyes. Finally, the surgeon validated how drastically TED has changed me and my appearance.

He will perform a bony decompression along with an ENT surgeon who will enter through my nose to remove the medial wall and part of the orbital floor. The oculofacial surgeon will still need to make incisions on the outside of both eyes to remove the lateral wall, but he said the incisions would fade into wrinkles. Well, I'm only 27 and look 17 so I don't have wrinkles but he assured me he would do his best to create the minimal scarring. Has anyone else had two surgeons - an oculofacial/ophthalmic and an ENT - perform their OD?

He also assured me there would be no residents on my case. I gave permission for my surgery to be filmed, viewed, etc., but he does not allow residents in on surgeries of this nature (nor does the ENT) especially considering my age and circumstances.

He told me the chances are about 50/50 that I will need strabismus surgery even though I currently have no double vision. I will definitely need lid retraction, so we are looking at a minimum of six months to a year of surgeries, but I'm ready and almost excited. Due to the extreme acne and weight gain I experienced on prednisone for TED, he will only give me steroids during the surgery, but not after. He said it is an absolute must during surgery. I had so many questions I forgot to ask why, but that's only a few hours of steroids versus several weeks or months.

I should know tomorrow exactly when the surgery is - it'll be a Tuesday after Aug. 20 due to scheduling both surgeons and my cousin's wedding on Aug. 18. I will need an appointment with the ENT and with my primary doc beforehand. I'm currently living with my dad to help him out and it actually works out great that he'll be able to help me out during this long recovery. My boss and co-workers still don't even know I have Graves or TED, but I plan to sit them down once I have a confirmed surgery date. Thank goodness for two weeks' vacation time and a really cool boss, and I work for a Catholic school, so I get the week before Christmas and New Year's off which would be good for the second surgery, whether that's strabismus or eyelid retraction. I have read varying stories of OD, and since I'm having both eyes done at the same time, I know it'll be difficult but I hope to return at least half-days or working from home by Day 15.

gatorgirly - Thanks for the update…that's good news that you are in the “cold” phase now and ready to move on!

I'm not familiar with the steroid issue, but perhaps one of our other members can chime in on that.

Wishing you all the best!

Kimberly

Hi gatorgirly! Aren't you in Boston now? Maybe you should change your name to lobstergirly! (:

I had an ENT do the medial side of my OD, the same thing that has been proposed to you. Seemed to make sense to me. Especially because that is the way the oculofacial surgeon did OD's in his practice. It was a nuisance ‘cause the ENT lived relatively far away from where I am in Seattle. But that’s a small thing. I had the OD for optic neuropathy, and I was in the active stage at that point. It did save my vision. I had no double vision as a result of the surgery, but I had terrible double vision before the surgery. I had it in three fields, and it was terrible. I had none of the listed complications after my OD. But afterwards, I was not able to close my upper eyelid. Still can't.

I think I wrote a lot about my OD experience, so you should be able to find it in the search box. I pretty much told every detail. In summary, the two main things I suggest are:
-elevate the head of your bed as much as you can. I found that it worked best if I put blankets, multiple pillows, UNDER the mattress, all the way across the bed.
-Use cool ice packs almost all the time for the first 3 days for sure. I did have help, someone maintaining the packs and bringing them to me.

In terms of pain, I had very little pain. But I attribute that to the two listed suggestions above. I went for a walk in the neighborhood the 2nd day, and tried to sit upright in a chair, cause I got tired of the bed.

I just saw a surgeon last week, he suggested that I have a 2nd OD on the prior eye, and one on the right eye. I am not sure about this, cause I have had my strabismus surgery quite a while ago, so might risk having double vision. Counting both eyes, and including upper and lower eyelid surgery, I hve had nine procedures since the beginning of TED.
Shirley

Hi. I just had a 3 wall decompression in my right eye 11 days ago. One suggestion is make SURE you stay away from anyone with a cold for a week before the surgery and for weeks after the surgery. Drs won't do the surgery if you have a cold (an infection). Afterwards since you can't blow your nose you'll want to stay away from public interaction so that you're not putting yourself in the situation of dealing with congestion while healing.

Todd

Hi. I just had a 3 wall decompression in my right eye 11 days ago. One suggestion is make SURE you stay away from anyone with a cold for a week before the surgery and for weeks after the surgery. Drs won't do the surgery if you have a cold (an infection). Afterwards since you can't blow your nose you'll want to stay away from public interaction so that you're not putting yourself in the situation of dealing with congestion while healing.

Todd

Shirley - I am actually 90 minutes from Boston, in the little nipple of Massachusetts on the CT border. So luckily there is a great surgeon here, otherwise I would have to drive to Boston for this. I went to UF, so I'll always be a Gator What kinds of ice packs do you recommend? I am pretty loyal to the 88 cent bags of frozen peas but I want to make sure whatever I use won't make the pain worse or press too much on my eyes. The head of my bed is already raised, and I need to buy some jersey knit sheets so that when I raise it a little more, I don't slide down my bed (I already do sometimes!).

Todd - I like your idea. I have always had a weak immune system, so I am kind of a jerk when it comes to people around me who are sick and refuse to stay home, so this will not be a problem. I might even steal some masks at my next appointment and wear those whenever I'm out in public before the surgery, and maybe even after. I'm really stressed about not being able to blow my nose because I normally do that about 15 times a day and can't take my Claritin the day of surgery. How are you feeling now that's it's been almost two weeks? Are you back at work? Back to normal activities? How's the bruising and swelling?

I still don't have an official date (should today or tomorrow), but my boss told us she needs our time off requests for now until the start of the academic year (I work for a college), so I had to break the news to her and my two officemates. I was worried they would freak out, but they actually said, “Graves?! That's what our previous director had. He had the eye problems, too!” So they totally get it, and we spent the next hour discussing thyroids and eyes and the surgery. What's strange is that I work in PR/marketing. He was the marketing director. The PR director at my last job has Graves and TED. We all enter this profession knowing it's high stress and not something you can shut off at 5 p.m., but I find it curious that I know three people, including myself, in this profession with Graves, something my first endocrinologist has always attributed to the extreme stress in my first job out of grad school.

They want to know what accommodations they can make for me to make life easier from now until I am recovered from surgery. I told them I already work in the dark and wear sunglasses all the the time outside (now they know why) but that the nurse at my surgeon's office said computer work might be difficult during weeks 2-4, and nearly impossible if I get double vision. Does anyone know if there are special computer screens that can help, or software problems that help ease eye strain? I think my best bet will be to take one full week off, then plan to play it by ear from then on, probably working from home or even coming in to the office a few hours a day as long as someone drives me. Again, that's a bridge I don't want to cross until I must.

@gatorgirly - So glad to hear that your co-workers were receptive. *Very* odd about all those people in your profession, all diagnosed with Graves'!

I'm not familiar with any specific software that might be of assistance in looking at a screen, although if you do a lot of typing, you might look in those voice recognition software systems, which could potentially help minimize your computer time.

Keep us posted!

Surgery is scheduled for Sept. 25…in the afternoon! I have to fast starting at midnight, so it's going to be a long day with no food - and I'm one of those six small meals a day people. I plan to sleep as late as I can, do some light yoga and take a few walks with my dog to pass the time, and bring my iPad to the pre-op area to watch some movies or catch up on my shows and then Skype my mom before it's time to go to sleep (my dad will be with at the hospital with me).

Thanks Kimberly. I will look into the software. I know my laptop has a “read to me” function but it doesn't type what I say, only reads aloud what is on the screen. Fortunately, all I really need is a phone to handle any work crises (I'm the college spokeswoman), and I will get one full week of peace and rest and then I will turn my phone on for any PR emergencies or reporter questions the second week, even if I'm still at home.

gatorgirly_wishing all the best!!!!

Hi, first thing to do is get some ocean nasal spray. Spray it in first thing in the morning 2-4 shots per nostril. Use it several times a day. It works for me. I haven't had any real problems yet. Try it for a few days this week to see if you're ok without blowing your nose. I was really paranoid about it before hand but it is a non issue. My dr doesn't want me to blow my nose for 1 month. Most other drs say 2 weeks. I've had some muscle pain as the eye muscles find their new place in the world called Todd's sinuses. For the first 11 days it felt like I had something in my eyes occasionally (I assume dissolving stitches). It was annoying but hot wet compresses (after 3rd day) helped. An hour or two later the feeling would come back and when I couldn't deal with it… more hot wet compresses. Both my eyes get tired if I look around a lot. Then I loose focus from double vision. I still have double vision in the morning. I'm still black and blue but it is going away. I work with the public so I would freak the average person out. Half of my eye is still blood red. It'll be a while before I go back to work (2nd surgery in the 3rd week of August). Since you work in an office 2 weeks off should be fine (more if you're uncomfortable). Just remember that your muscles will rebel on you every now and then (a good time for a hot compress). BTW, I'm taking 500mg bromelain 2x daily (also good for sinuses) and 3 30x arnica tablets under the tongue 2x daily. These help reduce the bruising faster. You can start them 1-3 days prior to the surgery. I can't imagine getting both eyes done at the same time but if you have the support from friends and family you'll be fine. Stay on top of your pain meds the first 3 days. Don't skimp on them. After that you should be fine with Tylenol. Your hardest time is the first 3 days. The swelling peaks on the 3rd day. Don't look if you're squeamish. From there it improves quickly. Try hard to control your intake of comfort foods. You'll be bored and that's what got me.
Todd