There is a list of things to think about as you prepare for ODS…they are things I wish I’d been warned about
**I wish I had discussed in detail with my doctor during the pre-op appointment about what kind of pain medication I would be on, and the appropriate dosage. In a perfect world, I would’ve had that prescription filled BEFORE the operation, but the Casey Eye Institute doesn’t allow narcotics to be dispensed until AFTER the surgery, because they’ve had problems with people canceling surgeries and keeping the drugs. In my case, the underling doctor under my surgeon prescribed a dose that was ridiculously low, and I suffered through the first day and night because of it. Drugs are your friend for the first 48-72 hours…..don’t even TRY to be brave about it.
**With my second surgery a week later, I wish my doctor had told me that there was a chance that the would choose NOT to remove the stitches from the operated eye. This would’ve given me a chance to make some rudimentary adjustments to my home to make it more friendly to the vision impaired. It wasn’t the end of the world, because my mom moved in for the month and really helped out, but a little forewarning is better than a last minute surprise, IMHO.
**I wish I’d realized for just how TIRED I would feel for the first 6 weeks. My doctor did tell me this, but I just didn’t believe him. I historically bounce back from major surgeries: I insisted on walking around the hospital ward just hours after a both c-sections (much to the nurse’s surprise) and I was at a neighborhood BBQ just 48 hours after my hysterectomy. The ODS was different. We’re talking about napping all day and sleeping all night. I never made it by the pool with the kids, and I barely made it into the dining room for meals. One of my favorite memories is my friend Jan visiting me and crawling into bed with me! I am just now feeling like I can go the day without a nap, and hope to resume aerobic exercise this weekend.
**I wish I’d thought the timing of the surgery through….I should’ve put it off until the fall/winter, when Oregon is overcast and cold, instead of during August, Oregon’s sunniest and hottest month. We have windows that face the west, so even with the air conditioning on, the bright sun in my bedroom became unbearable. We did the ultimate white trash thing and taped up tin foil on the windows….it was real perty. I missed out on some of the last fun days of summer with my kids, and my son’s last few weeks at home. I’ll never get that back. But, I DID dodge the back to school shopping bullet, as my mom stepped in and spoiled her grandkids.
**I wish I’d known that they were going to put me on 2 courses of Prednisone. I know there isn’t much I could’ve done about it, but knowing ahead of time would’ve prepared my poor husband for the evil that was about to ensue.
** I wish my doctor had given me a realistic idea of just how much facial numbness could result from surgery. Eating a sandwich is tricky, as my upper lip doesn’t want to lift, and drinking red wine in public is out of the question, because I end up with what looks like a kool-aid stain!
THINGS TO DO BEFORE YOUR ODS:
*If you have kids, make arrangements to have someone care for them (and you) for at least the first 72 hours. You will be tired and drugged and you need only focus on healing yourself. If my mom hadn’t come down, I don’t know how I’d handle it.
*Make sure that your household is prepared for at least 2 weeks without you. Pay your bills, cancel appointments, and make sure your house is uncluttered and ready for you to stumble around with limited vision.
*Realize that you won’t be driving any time soon. I’m lucky enough to live in a city with grocery stores that deliver. I took advantage of that service, and the one that brings any local restaurant’s menu to your door. Let neighbors pick up groceries at the store (if they offer, lol) and just be prepared to be a little helpless for awhile.
*Don’t expect miracles from the surgery. I’m still working on this one. I’m disappointed that, although my eyes look better and are not nearly as protruded as they were, my eyes are not as symmetrical as they used to be. I used to have symmetry to my face, even with my eyes bulging out. Now my left lower eyelid seems less tight than my right, which makes the whole eye seem larger. But, I have to keep reminding myself that it’s better than it was…it’s just not the way I looked pre-Grave’s disease.
Thyroidinfo's Weblog 
Just a fast note here . been keeping uyp on how you are doing . sounds liek that you are doing better .takes a long time to recover .Glad that you mom could be there to help u out . thank god for moms . we are lyucky to have them around . hugs Ti.
I’ve been keeping up with you in an effort to arm myself with first hand information. Thanks for the blog…
I await your latest pictures to calm my nerves.
I live alone in a new city and I think I might chicken out after reading how helpless one can be.
Thanks again and keep writing!
Marciem
Hey saw the pic of your eye’s healing up . It is looking good . Hope the pain is going a way . sorry on the spelling on the last commit. Hugs Ti
Glad to see you’re healing. I just had bilateral orbital decompression surgery on Monday. It’s Thursday, and the surgeon took out the two little stitches that were holding my lower lids up (attached to my forehead by a long thread). He’s happy with the results. I have a little diplopia, but nothing bad, and he’s hopeful that it will resolve itself as the swelling goes down.
At this point, I am able to walk around pretty well, although I am still sleeping in the recliner, which is more comfortable than I thought it would be. Nausea while riding in a car this morning was a minor problem, but then, I’m not used to riding, so I probably would have been queasy even without the surgery…..and I had just taken antibiotics and Lortab on an empty stomach.
This afternoon I am on the computer for a longer period than yesterday and have been watching TV. There’s some new bruising on either side of my nose, and my eyelids are puffier than they were the day after surgery. I feel good. A little tired, but good. Am enjoying being a slug and hanging around in my bathrobe. The Lortab holds the pain at bay for about six hours, and that’s mainly a little achiness behind my left eye. The right eye feels fine.
Looking forward to going camping with friends on Columbus Day Weekend if the doctor gives me the go-ahead. In the meantime, I’m just having a good time doing nothing at all.
Good luck with the rest of your recovery! Hope the results are what you wanted! I’ve had this for almost 50 years, so as far as I’m concerned, any improvement will be just fine!
Holly;
Thanks for stopping by…..I’m happy that you are recovering well. Sounds like they did both eyes at the same time….I wonder sometimes if that might not have been a good idea…..
Hi Holly , glad to read that you are doing well with the Recovery . The fun part for you will be the going camping . sounds like that you have had this a long time . I hope that this site that Beth has put to gather is helping u and others on this The more infor you can get helps . Beth is such a great person and very giving as well . All that she has gone thought adnthat u are going thought u both stay up beat . Ti
sorry for the spelling . type to fast at times.
should be and that u are going though.
THANK YOU for blogging about your experience! I’ve asked my eye doctor repeatedly if he could connect me with someone who has already had orbital decompression surgery so that I could ask questions and get a fellow patient’s perspective, but it appears that he’s unable or unwilling to do that. So…your blog is exactly what I’ve been looking for!
Coincidentally, I am also planning (probably, maybe, I’m still not sure) to have Dr. Dailey at Casey Eye Institute do my surgery as well. Looking back on the experience, would you still have Dr. Daily perform the surgery, or would you look for someone else? I only ask because he seems far more focused on the asthetics of my eyes, rather than long-term health and function. This worries me a bit, especially after reading about the $4000 cosmetic surgery he suggested tacking on for you! Have any insight or advice regarding Portland-area surgeons?
Now that you’re about 6-7 weeks post surgery, how do you feel? How are your eyes? Has the numbness in your face gone away? And how do you look? Do you think you look like you used to look pre-Graves?
I really look forward to hearing more about your experience, and I’d love to see more photos if you feel inclined to post more. Thanks very much for sharing your experience!
Janet-
The subject last night came up again, and I was asked if I was satisfied with the overall results of the eye surgery. I have to say that I am. Not thrilled, mind you, but satisfied.
I think that Dr. Dailey is a very competant, and even extremely competant Thyroid Eye Disease surgeon. Unfortunately, he works at a big box eye clinic, and they put more of an emphasis on the number of patients vs. the quality of care. I resent that I have to wait an average of 45 minutes past my appointment to meet with him, and I just find that unacceptable. Nice man, good surgeon, nice bedside manner, but terrible office skills. I would probably go back to him, but only after I got a second opinion at a comperable surgeon at Legacy Emmanuel. (It has been my experience that the care at Emmanuel, a trauma one center, is severall notches higher than at OHSU…but that’s a whole other blog)
Does my face look like it used to look pre-Graves? That remains to be seen. It’s really hard to tell for me, because I’ve been battling Graves for 3-4 years, and the eye disesase kind of snuck up on me gradually. My husband thinks that the surgery actually diminished some crows feet, so I guess that is a bonus!
Thanks so much for the info. I would do a similar blog with my experience, but don’t really know how. So I’ll use your’s to pass on some more info. I had ODC on my left eye on Oct. 6/08 in Halifax, Nova Scotia. I was hospitalized overnight. I felt absolutely no pain during the entire experience. The first day, I was so conked out from the anesthetic, that I don’t think I could have felt anything. I wasn’t prescribed any pain killers or antibiotics, just advised to take a combo of 400 mg Advil and 2 extra-strength tylenol every 6 hours, if needed. That was enough. The Advil, as always, upset my stomach, so I could take Gravol too. I also had to apply (or my husband did because I was to squeemish to look at myself) over-the-counter antibiotic eye ointment at bedtime for 7 days.
I was very disappointed with the lack of information given concerning post-op recovery — what to expect, what to do and not to do, etc. So, I freaked two times after post-op: (1) when the swelling got worse on the third day and (2) when I coughed up blood. It is now 15 days post-op for me and I am still coughing up blood. There is a trickle of it running down my throat from my sinuses, then I have to spit it out to get it out of my irritated throat. Apparently this is normal for the first 4-5 weeks after surgery, so if anyone else experiences it, don’t be alarmed (unless there is an extreme amount). My eye is still quite swollen, but improving day by day. The incision area is very numb and tender to the touch, and my vision in that eye is blurry.
You are lucky to have both eyes done quite close together time-wise. In Nova Scotia, the doctor is not allowed to do that. I have to wait 3 months for a follow-up appointment to see if she will do the other ODC or not. And then wait again 3 months after that surgery, if it is done, to determine whether she will do lid surgeries. All our healthcare is free here, and my doctor is the only specialist that performs these surgeries in Atlantic Canada, so we have to expect delays. But I would sure love to get it over and done with quicker.
I am glad you are feeling better. Can I ask why you had to stay in bed for 12 weeks? Is that mandatory where you are, or did you have complications? My only instructions were to do nothing for a week post-op and nothing ‘strenuous’ for at least a month after that. “Strenuous’ was not well-defined so I am not entirely sure what that means. I can’t imagine being confined to a bed for 3 months! Maybe having the two surgeries back-to-back is not such a great idea?
I started feeling better about 5 days after the surgery, then I took the flu (probably from being run-down post-op) for a week which left me very tired and weak. Now I am PMSing with migraines, etc. I can’t wait to feel better! Doing light housework makes me very played-out, after just 10 minutes of doing it!
Again, thank you for taking the time to help us ‘TED sufferers’ out by posting your experience. You have been a very big help to me. I wish you a wonderful result– physically, emotionally (because this disease is emotionally scaring) and appearance-wise.
Jean;
Welcome and thanks for joining this club I wish we were never members of!!
To explain the 12 weeks on bed rest. I may be overstating that number a bit. There were 3 weeks of total bedrest (due to the back to back surgeries) followed by another 5-6 weeks where I just had no stamina. My doctor explained it as normal, because my body had been through a severe trauma, and it would take that long to recover completely. During the first 8-10 weeks I was told not to lift anything over 5-10 pounds…..that really limited my abilities, but I didn’t dare question it….Had i only had one eye done, I imagine my body wouldn’t have taken so long to recover, but I don’t know, for sure.
The other 2-3 weeks was added on because I had a hysterectomy 3 weeks before my first eye surgery.
And then, all of a sudden, I found myself on a 3 mile walk, and I walked all over Seattle’s waterfront, and today I spend 45 minutes at the gym without batting an eye…..so I’m definately on the road to recovery.
Hope you are too!!
You have been through way too much for one person to handle all at once. I sometimes wish I could speed the process up, things are done slower here in Nova Scotia, but then again I am kind of glad I am given a chance to recuperate between procedures. I am really glad to hear you have your stamina back now. I posted pictures of myself on my Facebook page, if you are interested in seeing them.
Not being able to lift more than 5-10 pounds really puts a damper on parenting duties. My 40 lb, 4 year old daughter loves to be lifted and cuddled.
Take care and I hope all has gone well.
Wow! Speechless! You are some terrific people, sharing your experiences with all of us, which by the way has been EXTREMLEY helpful to me. I have not read of anyone having radiation therapy PRIOR to the decompression surgery though. It helped about 30% but not enough to forego the surgery itself. Oh, by the way, I’ve only got one eye seriously involved. Will be having surgery on the muscles after the ODS,( both eyes) then followed by the eyelid surgery. Scared? Absolutley! I am tired of living in a Picaso type of world. My husband has asked me if the surgery is REALLY necessary, (See prior comment), and I’m just about there. We farm, so it’s important to me that I know about recovery time, complications, etc. Thanks so much for all of the helpful suggestions. You are an awsome group!
I agree with Kristen. I am very thankful for finding this blog and reading about all your experiences with ODS. I have been thinking about it for the longest time now, but the GPs here hadn’t been that helpful and I am beyond fed up of other people looking at me weirdly or avoiding me or even bullying me because of proptosis. Even my 7 year old daughter has told me that I look scary and it was then I realized that enough was enough! My self-confidence and esteem took a severe nosedive and I’ve had several bouts of depression because of it. There isn’t a lot of surgeons who perform this kind of procedure, but I managed to find one. Hopefully I will be able to set up an appointment with him and find out once and for all what could be done about my eyes. I will even print this out as a guide when I ask questions!
As Kristen said, thank you very much for all your insights about ODS. You are all a godsend!
Anna Maria;
It was my pleasure to share my experiences with others so that we could shed a light on ODS from the patient’s point of view 🙂 Makes me happy everytime I read that my littl old blog helped someone 😛
how much or this orbital decompression cost?
i want to get this surgery like in 2 months (July 2012) but i don’t have a clue of the price. plz help? im in AZ and dont know a good surgeon.
Tony;
My decompression surgery was covered under my insurance, so I have no idea how much it actually cost. I paid a couple of thousand out of pocket for it….
Thank you all so much for the info. My friend is going through this surgery right now. She had to get emergency decompression on her right eye as pressure was pushing on her optical nerve. Finding this blog on the internet has been most helpful in giving me insight as to what to expect upon her return home. As a friend I can do nothing right now except research the condition and learn as much as possible and then be there for her when she returns home to help her out in any way I can. So again thank you for this info it is helpful to know what to expect on her arrival home.
I have been dealing with my fish eyes for a little over a year now. I’ve been seeing a doctor (sometimes two of them lol) this whole time. I just left her office today and she said that surgery was the next step for me. I decided to do some research and came upon your blog. It has really answered a lot of questions for me. Unfortunatly I do not have insurance so I don’t know if I will even be able to get this done. I have been getting more and more headaches lately and I’m certain they are from my eyes. Is there anyone on here that can give me some kind of an idea to the cost? Thank you all so much for sharing your experiences in this blog. You truly have no idea how helpful this has been for me! Good luck to all of you andmy God bless you and your families.
Kris;
I’m sure the costs vary according to insurance coverage and physician costs. I paid $5000 out of pocket for my surgery, but that was because I had insurance to pick up the bulk. I can’t remember exactly, but I recall it being about 20K per eye. Don’t quote me on that, though.
What a blessing to find your blog, and discover that Dr. Dailey was your surgeon. I saw him last week for the first time and am waiting for a surgery date for my right eye first, followed one week later by my left. He told me my exopthalmometry readings of 31 in both my eyes is the highest he remembers seeing for a long time, if ever, which confirmed my impression that my proptosis is very severe.
In the last couple of years I have had increasing diplopia which is now so severe that I see images with my left eye nearly normally, but see the same image simultaneously way up in the sky and way to the right of midline with my right eye. It is extremely disturbing, especially when riding in the car. I see one image of an oncoming vehicle to my left in the normal place in the lane, and an image of the same vehicle up in the sky moving down toward the image on the left as the vehicle gets closer. This is very difficult for me because I am a Public Health Nurse and need to drive to home visits, meetings, and case conferences. It is miserable to try to view the computer screen, or do many other tasks like putting on make-up or styling my hair.
And then there is the pain in my orbits and eyes themselves. My CT scan last week showed crowding at the orbital apices with just a little plane of fat protecting the optic nerves. The possibility of optic nerve compression has me feeling very apprehensive.
I am fortunate, however that I can close my eyelids because I had blephaloplasty surgery of both eyelids 16 years ago when I had my first episode of the disease and couldn’t close my lids. Nevertheless, I have to use eye drops, gel and ointment frequently due to the exposure because of the proptosis. Unfortunately I live in Eastern Washington and the dry climate with lots of irritating particles in the air is not a good thing.
One of the things I am most uncertain about right now is whether I should be considering going to an oculoplastic surgeon who teams up with an otolaryngologist using an endoscopic procedure for the lateral wall for the orbital decompression since I need a three wall decompression. I didn’t know there was such an option when I saw Dr. Dailey so I didn’t talk to him about it, and he didn’t mention that option. I just learned about the various orbital decompression techniques when I was searching online for information about what recovery might be like. Do you know anywhere in Oregon or Washington that uses the team approach?
I am planning to stay in Portland between the surgeries and until the sutures are out after the second eye since I don’t think I want to travel back and forth to and from home which is at least a four hour drive, so probably for three weeks. I am hoping to stay in a guest room in the nurse’s dorm next to the hospital where I did my nurse’s training. The friend who drove me to Portland for the appointment with Dr. Dailey and I stayed overnight there and we checked on the amenities and feel it would be a good place to stay while I am recovering. If you have any advice about things I should take with me that I will need while recovering, any special food items I should have in my room (it has a microwave and refrigerator), and if you think I will need someone to take care of me and if so, for how long after each surgery, it would be really helpful to me. Your “Things I Wish I’d Known” post was very helpful and if you could share even more little details with me, I would be so grateful. Do you think I can take care of myself after the surgeries since I won’t have any children to take care of or things I have to do besides take care of myself? My daughter is planning to drive me to and from the hospital for both surgeries, but I am hoping she doesn’t have to stay for long afterwards because she lives on the Olympic Peninsula and has children ages 6 and 11 months old so she really isn’t free to be gone from home for long.
Another really stressful thing right now is that I have appealed to my insurance company to cover at the in-network rate. They only approved my appointment with Dr. Dailey and my CT scan at the out-of-network rate. I am hopeful, though because they do not have anyone in-network that specializes in Thyroid Eye Disease.
One other thing I sure wish I knew was whether a month off work will be a sufficient amount of time. There is no-one else to do my job (I do the Children with Special Health Care Needs program) so more than a month off would be very problematic.
Sorry for the long comment, but posting here has really helped me organize my thoughts. Any advice, information or comments for me would be greatly appreciated.
I’m afraid I’ve let this blog go by the wayside and am just now reading this. I hope everyhting turned out well for you. Dr Dailey is very good at his work, and I remember how hard it can be to get out-of-network coverage….so frustrating!
I will be having orbital decompression surgery in about 12 days on my left eye as a result of thyroid eye caused by Graves. The muscles ,etc are enlarged the extent that they are pressing on the optic nerve and causing vision loss. The plan, according to my surgeon is to do both an incision at the corner of my eye to remove bone and going thru the nostril for removal of fat, muscle. I meet with with the ENT doctor next Friday to discuss the latter procedure. What questions would you advise me to ask. I am concerned about the post-op experience – pain, bleeding, brusining, swelling and recovery time.Glad I found this blog and hope to hear something soon.
Helena my friend had this surgery last year as she has eye cancer and the cyst was pressing on her optic nerve as well causing vision loss she is doing so well. Her eye is no longer protruding out to where she looked like a monster it is back in and looking very normal in fact you would never know she had it done. She said she had no pain afterwards it took a few weeks for it to look normal again but wow she looks terrific and is doing so well she did not even have bruising. She did not go to an ENT she went to an optomologist that specialized in graves and cancer of the eye. My suggestion would be to look into that type of Dr. before you let anyone touch you, after all this is your eyes that even though it is Graves I would only want a specialist in the eye field to do the work. I wish you the best don’t be afraid it will be ok.
Hmm it appears like your site ate my first comment
(it was super long) so I guess I’ll just sum it up what I wrote and say, I’m thoroughly enjoying your blog.
I as well am an aspiring blog writer but I’m still new to everything. Do you have any suggestions for novice blog writers? I’d definitely appreciate it.
Natalie….
I can’t wait to check out our blog…. my only advice is to keep it up!!
Not sure how old this blog is, but I just recently had ODS on both eyes. Date now is 8/2/13. I am glad that my typing skills are pretty good, at this point. So far it has been about 3 weeks, with the doctors saying to expect another 5-6 weeks for full recovery.
Dr. Daily is good at what he does, but you are right in that he does seem to lack in the office. Right after the 2nd eye was done, he transferred me to a doc that works under him. Dr. Ahn (I think that I spelled it correctly) is a very nice doctor. He is good at his work and has a very personable attitude in the office (my wife even approved and she is a stickler for my health care).
My future follow-ups will be with Dr. Ahn, and he is very diligent in keeping up with his patients. He even came into the office on his day off when I was having some swelling in my letf eye that needed care.
Overall, the recovery can be boring. Laying around like a couch potato for weeks can be very annoying. This is the kind of procedure that I would recommend only if the graves is progressing enough to become a issue. I have heard of others doing this for cosmetic reason, and I think they are nuts.
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Thanks so much, Kurt!