Wow! Where did the year go? I’ve been so busy with Christmas and snowstorms and kids and life that I’ve neglected this site. Thanks to everyone who has emailed me and commented here. The hits just keep coming, and I’m glad to know that my little musings here are helping some of you.
Update on me…I am STILL having issues with numbness…especially on the left side. Even the right side seems to have a little more numbness lately, but not as bad as the right. I still have problems drinking hot liquids (they feel like they burn through the roof of my mouth into the back of my eye)
Last week I had a severe bout with double vision. I was out of town, and away from any eye moisturiser, and it lasted at least 12 hours. I couldn’t drive, I could barely WALK! I was nauseous the whole time, and reading anything was out of the question, unless I closed one eye. I called my ocular surgeon first thing Monday morning, and the triage nurse’s reaction was “Oh…huh? Well, call us if it happens again…that’s kind of strange.” She said that most people who have double vision have it forever, and it ususally doesn’t revert back to normal.
I also told her that my tear ducts seemed to hurt whenever my eyes watered. Didn’t seem to matter if it was from watching a sad movie or cutting onions, the first tear out of my right tear duct really hurts. She had no explanation for that either, and stated that she’d never heard that ailment mentioned before.
So, am I oversensitive, or just a freak? LOL!
I’m posting a photo taken on Christmas with very little make-up.
Wow! Talk about a really small world, finding this blog! I just had ODS done by Dr. Daily up at OHSU too. He does good work because you look fantastic! I had the first one done at the end of Dec and then the 2nd the first week of Jan. Not the greatest way to start a new year but I’m glad I did it and got it over with.
It sounds like your experience was similar to mine and I don’t have too many complaints….well maybe just a couple.
In early fall when I knew I was going to be having to do this surgery, my sister in Ca insisted I get a 2nd opinion. I was going down there (I’m from Santa Clara, the bay area) for my dad’s birthday and my sister made me an appointment with an ocular surgeon that does ODS at Stanford Hospital. The 2nd opinion doc actually knew Dr. Daily and said I was in very capable hands. The only thing different he did was go over the aftermath of this surgery in comprehensive detail. I like Dr. Daily, thought he did a great job and is super nice (and really cute in a nerdy sort of way) but he sure did gloss over a lot of side effects of ODS. He should really do a better job of letting his patients know what they are getting into, especially the facial numbness because it’s 10x’s worse than how he described it. If I had not talked to the 2nd opinion doc ahead of time, I would of been really upset and pissed at some of the side effects I had that were not mentioned beforehand.
Thankfully, I did not get any resulting double vision but my eyes do constantly tear, which is really annoying. My tear ducts are frequently sore, something I knew could happen because the 2nd opinion doc said probs with the tear ducts could occur and what I should look for. I’m also having issues with hot and cold drinks effecting my whole nasa area, another thing the 2nd opinion doc went over with me that Dr. Daily did not.
I was worried about gaining weight from being inactive after surgery and having to take prednisone. Ha, that was hardly the case because my jaw was soooooo sore and I coiuld barely open my mouth to eat anything at all. I wound up losing weight instead, which was not entirely a bad thing but my jaw on both sides hurt like hell for awhile.
My only other complaint is that the scar is hardly noticeable on my right eye, but the one on my left eye looks horrible. It’s only been barely a month since that surgery but I am a little concerned. I know OHSU is a teaching hospital and I have to wonder if the learning surgeon did my left eye. If that’s the case, he/she need to practice ALOT! I see Dr. Daily for a 3 month check up in Aprl and I will for sure be mentioning my concern about the scar on my left eye.
Anyhoo, once again, after looking at your pics before and after you really do look great! I hope my shakes out just as well. Didn’t mean to write a novel here but I’m glad I found your blog. It’s nice to know that someone else out there knows what I went through with the whole Graves and thyroid eye problems.
LOL, we could start an “I got cut by Dr. Daily” club!
Take care!
Wow! We did have pretty similar experiences. Sounds like your second opinion really helped you have a more realistic idea of what post surgery is like….I’m glad you had that. I’m hoping this blog helps others who, like me, were a bit surprised by some of the after-effects.
I, too, have one eye that looks fine, and one that looks not so good….even now it looks red and “angry” as some of my friends describe it….There is research that indicates that botox can be used to “ease” the scar into healing better, and I imagine Dr. Daily might suggest that to you….use the scar cream religiously!! Also, a topical antioxidant has helped me quite a bit….I literally use Monavie gel as a facial!!
Thanks for the tip about the Monavie gel, think I’ll give it a shot. I’m going back to work next week and I’m just beginning to fool with covering the scars with makeup. I work with kids, so I don’t want to scare them by looking Frankensteinish.
yeah, I put quite a bit about my experience but if anything, I hope, along with your info, it helps someone else facing this surgery. The surgeries themselves were not that bad but afterwards, it’s quite an adjustment.
Are you going to have to have any other surgery? I’m pretty much slated for the post eyelid surgery because Dr. Daily already told me that the chances of my eyelids retracting on their own are slim to none.
Kelly;
I’m still on the fence about the eylid retraction surgery. I’m fairly sure I will have it done, but my dissatisfaction with my second surgery (specifically the scarring) is leading me to think about going to visit Dr. Bensimone at the Pearl Women’s Center. He is a world renound plastic surgeon who specializes in eyes. My understanding is that he could perform the surgery, and it would still be covered by insurance. They even eat any extra out-of-network costs, so it won’t cost any more for me out of pocket than going through Casey Eye Clinic again….Plus, he might be able to fix my bad scar on my left eye.
But, that can wait until next fall, when the rains are here, and the kids are in school….
Hello again, haven’t been to the site since last Oct/08 I think. I am very glad to read your blog because I am still dealing with the TED and haven’t stabalized yet so I still need to wait to have any surgeries. I am glad you are feeling better. you look fantastic. I would never know you were having any of the side effects you mention. I am so nervous/scared about the surgery but want it so badly because I “really” (putting it mildly) don’t like my eyes. You mentionned 22 mm protrusion well I have 24mm with my left eye that is permanently crossed. So OD of course would be 1st surgery then 2nd to correct the crossed eye which gives me double vision and finally the puffy eye thing (easiest surgery). Will all these side effects of OD go away or are you told they are permanent? Do you know anyone that has had the OD but hasn’t done the radioactive treatment for the thyroid? Sorry so many questions/concerns etc., but thank you again for this blog.
Sarah
That’s so weird we both have scars that are worse on our left eye. What’s the deal with that? It bugs me too because you can hardly see the one on my right eye but the left one, it’s pretty noticeable. I use a lot of MAC makeup products anyway but the makeup artists at the Bridgeport store were so helpful in showing me how to cover up the scars with the makeup I have. LOL, it’s hard to leave that store without buying anything though.
Ya know, I was sort of thinking along the same lines, finding someone else to do my eyelid surgery. About a week ago I woke up one day with such bad allergies. I was constantly sneezing, had itchy and watery eyes despite taking a Zyratec and then another antihistamine later on. Anyhoo, my allergy symptoms went away but my face, especially the area where I have all the numbness felt all swollen and was burning like hell. I called Dr. Daily’s office and the nurse that called me back totally blew me off said to use an ice pack. That was so off putting and totally pissed me off. Gee, I’m so sorry to be such a burden and an inconvenience. Who needs that @#$%?
Kelly;
No one here is ever a burden to me…we’re all in the same boat, and I love that we can come here to chat.
My experience with surgeons has led me to believe that most surgeons actually do the final stitching up….which is a shame, because that’s where scarring occurs. I remember my OBGYN bein so proud of the hand stiches she did on my cesarian, because it’s so unusual these days for a doctor to do hand stitching!!
When my husband had a spot of skin cancer removed from his cheek, we were lucky enough to have it done by a plastic surgeon. he explained that shen he stiched him up, he would carefully try and reconstruct the facial tissues and re-stich each of the layers of the skin with the tiniest of hand stitching….resulting in minimal scarring. My husband’s skin cancer was removed a week before my eye surgery, and his scar is non-existant, even though it was on his cheek. Juxtapose that with my eyes, and it makes you wonder if they only stiched the very top layer of skin back together…..
And, yes, I’ve had similar dissatisfaction with Dr. Dailey’s triage nurses. In January I called to tell them about how much it hurts when my right eye starts to tear up….it really hurts…anyway, the nurse only said that it was “unusual” and she’d never heard of such a side effect….but never offered anything more….just call if it gets worse….LOL!!
Sarah:
Hugs to you. I will try and answer your questions, but you have to remember that I’m just a patient, and not a doctor, and this blog is written from my point of view…
My eyes were protruding before the radoactive therapy, but they did get worse afterwards. I’m guessing that there are some who had the total thyroidectomy before OD surgery…but it is definately most common with after the RAI treatment, as it is clinically proven to worsen the TED symptoms.
I am guessing that the risidual numbness that I still experience will eventually go away over time, but I’m guessing it could be a year or more before I can sing or smile and feel natural about it.
But, all that being said, I would do it again….I was a virtual shut in as the result of my TED…I never went out without large sunglasses to hide my eyes (even on the darkest, rainy day) and I ducked from all family photographs! So, I have a semblance of a life back, and that makes it all worth it!!
Well your last paragraph sums up my life right now.
Being informed is the only thing I can do right now and so I appreciate your sharing your experiences with TED and any other things you have heard (in your blog or elsewhere).
Big hugs to you and your family and all the other people dealing with TED and any other sickness for that matter.
Thank you!!….and take good care….
Sarah
Hi, Great site. I am thinking about having OD but I am very scared. My eye surgeon told me there is a 1 in 1000 chance I can become blind during the surgery. Is this true and were you told that before surgery? Thanks