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in reply to: 5 years “stable” 2 weeks post- od #1177179
@tnapavlu – Well there was a period for about two months when I had the initial TED onset where I could not wear my contacts–my eyes were just too dry, swollen, and painful. However, after being on 50mg of prednisone for about eight weeks, they had “calmed down” enough for me to wear my contacts again.
I’m glad you were aware of the facial numbness beforehand because I was not. Although I love my surgeon, that was the one thing that really bothered me. I was too sick immediately after the surgery to notice it, but when we realized it in the middle of the night, my dad started calling both surgeons’ offices frantically until finally my oculofacial surgeon said, “Yeah, that’s temporary.”
I did have both eyes done at the same time, but the right eye required much more extensive decompression, so that’s why the numbness is only on the right side. The surgeon explained that there was a lot more moving and shoving in that cheek area while he was removing bone from the orbit floor, than there was on the left side.
Can you wear your contacts again? My prescription is pretty low but it’s still enough that without glasses or contacts, I can only see blobs. But with everything my poor eyes have been through, I’m not interested in Lasik any time soon.
As of this past Monday, my eyes are both at 18mm. They were at 25mm (right) and 23mm (left), so that’s about as drastic a decompression as one could ask for. And I’m totally happy with the results!
in reply to: 5 years “stable” 2 weeks post- od #1177175@vgould, I had no double vision before or after my surgery. According to my surgeon, my chances of developing double vision because of the OD were 50/50 because of how much bone and fat (mostly bone) he had to remove, but I was fortunate and still have the same good (with contacts/glasses) vision as before the surgery.
in reply to: 5 years “stable” 2 weeks post- od #1177172Oh wow, I’m sorry about the numbness and double vision. You are the first person I have heard of who is dealing with facial numbness post-OD like I am. Is it all over? Mine is just on the right side, and includes my upper teeth and gums, upper lip, and the cheek between my nose and eye. I have sensation on the surface but feel strong pressure when I touch the numb parts. It’s weird. I’m five months post-op so I’m starting to worry it’s not temporary…
April is soon! It’s great that you’ll have the muscle surgery so soon and not have to deal with the double vision much longer. I’m still 4-6 months away from eyelid lowering since my thyroid levels won’t cooperate.
Glad to hear you’re on the road to feeling (and looking) well again.
in reply to: 8 weeks post RAI – back hyper and not sleeping! #1177143It took my thyroid 22 weeks to die. I felt hypER the entire time, until maybe week 21. I felt OK, and then suddenly felt awful and sure enough, I was hypO. I am one of those people who feels better hypER, but fortunately I never had insomnia, so I can’t imagine being as uncomfortable as you sound. Hope you start to feel normal again soon!
in reply to: One week post orbital decompression #1177136I had bilateral orbital decompression in September 2012, so I am about five months post-op now. I also was on high doses of prednisone before the surgery, and I hated that drug more than anything.
I was fortunate in that I never had double vision before or after the surgery. Did you have it beforehand, or was it a side effect from the surgery? My vision was never blurry except for maybe those first 48 hours when one eye was patched and the other had all sorts of ointment in it.
You’ve taken the first big step, but it’s a long, slow process recovering from Graves’ and thyroid eye disease (TED). I still need to have my eyelids lowered but that’s still a few months away (only because we can’t get my thyroid levels stable – but that’s nothing new), otherwise I receive lots of compliments that I look like my “old self,” meaning my pre-TED eyes. My only complication from the surgery was temporary numbness on the right side of my face. My surgeon expects it to last 6-12 months, so another 1-7 months. It’s annoying, but most days I hardly notice…except when I have food in my face or teeth that I can’t feel and someone tells me or I catch it in the mirror!
Anyway, I hope you can find a better ophthalmologist or find the resources to get back to the Mayo Clinic to receive adequate care. An ophthalmologist wwho doesn’t have extensive training and experience with TED is about as useful with our eyes as a gynecologist would be.
in reply to: Alcohol & hypo #1176999I’m just barely hypo currently, but even when I was hyper, euthyroid, and hypo, more than one glass of wine ALWAYS made my heart race. I explained this to my doctors and they said, “No, alcohol is a depressant.” Yet I did a 48-hour Holter monitor and noted when I drank and sure enough, it correlated with a resting heart rate around 100-110.
Before Graves’ I never noticed my heart rate so I have no idea how alcohol affected it. I only drink wine and only occasionally (weekly or bi-weekly) since I’m trying to lose weight but it takes two glasses to make me uncomfortable and three to make me take half of a 10mg propranolol just to settle down.
in reply to: 2 decompression surgeries……. #1177014Do you have a consultation scheduled with the surgeon(s)? That would be the best source of information.
Like I’ve said before, two sounds odd to me unless they want to one eye at a time. I had bone and fat removed from both eyes during one, 4-hour surgery.
in reply to: What questions should I ask the Ophthalmologist? #1176772No, you’re not asking too much. Don’t quote me here, but I think the number my surgeon gave me was 18-20mm for normal proptosis. Anything above that is considered exophthalmos. I think my eyes are now at 19 or 20mm. If yours are at 25 and 26mm, then that’s significant. Then again, your eyes at 22mm might look normal, whereas my eyes at 23mm and 25mm looked drastically different since my “normal” eyes are very deep-set.
in reply to: What questions should I ask the Ophthalmologist? #1176770It was all one surgery – took about three-and-a-half hours. You might want to ask him to clarify. I have never heard of two separate decompression surgeries except when they do one eye at a time. The bone and fat were both critical in order to achieve the amount of decompression my eyes needed, so I can’t imagine doing one then the other.
in reply to: Vitamin D…Sneaky but it was worth it! #1176912Good for you. I check the T3 box every time my endocrinologist sends me a lab order because he normally only wants to check my TSH and T4.
in reply to: What questions should I ask the Ophthalmologist? #1176768So the ENT surgeon went first. He went up my nostrils (one at a time), removed my ethmoid sinuses so they wouldn’t be in his way, and then removed pieces of the medial wall. When he was done removing bone, he put my sinuses back.
Then my oculofacial surgeon came in and did his part. I don’t know whether he did fat first or bone, so I’ll guess. He made incisions through my upper eyelids to remove orbital fat from behind my eyes, then stitched them up. He made incisions through my lower lids – in the fleshy part under the eyeballs but not through skin – to remove bone from the orbital floor.
I may have explained this better in my blog. However, many people have ODs withOUT an ENT surgeon. My surgeon just prefers the endonasal approach to minimize scarring. And when I say minimal, I mean I have no scars whatsoever. The upper eyelid incisions healed to complete invisibility.
The oculofacial surgeon (who was the lead surgeon and the only one I continue to see for my TED) also told me that the more bone he removed, the higher the likelihood of developing double vision, which I did not have before surgery and fortunately do not have now except when I’m really tired. However, we both agreed on taking the risk in order to get my eyes looking like they did before Graves’ and TED, even if that meant double vision. I didn’t care. I hated the way I looked and was willing to deal with a few months of double vision (surgery can fix that) in order to get my old eyes back. Fortunately, no double vision and I got my old eyes back. I still have a prominent stare but that will be alleviated by the eyelid surgery. I don’t know if he plans to remove all the excess skin and fat above my eyes at the same time, but I will need that done either way. If I wear mascara, now that my eyes are back where they belong, it rubs off on all that extra eyelid fat TED gave me.
in reply to: What questions should I ask the Ophthalmologist? #1176766I just sent you a PM with a link to my blog
I have never once been told anything about diving more than 5ft. I’m scuba certified and plan to go diving this summer, so I’ll make sure I run it past my ENT surgeon but he knew I was a diver so I’d be surprised if that was something he just forgot to mention.
I will be honest and tell you I’ve had a few sinus infections since the surgery. I never had major sinus problems before – just a constant runny nose and apparently a deviated septum on both sides, but no pain or pressure before surgery. But they told me the sinus infections were likely for the first few months after surgery. The last one was right before Christmas so I’ve been good for about six weeks now and that’s the longest I’d gone since the surgery.
So you’ll have an ENT and an oculofacial like I did. The pediatric surgeon is probably for the double vision, right? And the plastic is for…? I have no visible scars but if they had needed to removal the lateral wall through my nonexistant crow’s feet, I was going to request a plastic surgeon at least be in the OR.
When is your appointment? I’ll actually be seeing my oculofacial surgeon on Monday morning.
in reply to: New problems with eyes #1175188If they tell you that you need optic nerve involvement in order to be referred to a neuro-op, they’re lying. I saw one and never had compromised vision, just really severe swelling at first and moderate proptosis. However, neuro-ops are hard to come by and you will almost never find them in rural areas and may even need to drive pretty far unless you’re in a large city. There are none here in western Massachusetts, so my oculofacial surgeon took care of all the testing that the neuro-op was doing.
in reply to: What questions should I ask the Ophthalmologist? #1176762I had a successful bilateral OD in September. Here’s what I asked:
1. What will I look like once I’m healed? I brought my surgeon several photos of how I looked before TED, and he used them during the surgery.
2. What approach will you use – removing bone, orbital fat, or both? If bone – which ones – lateral walls, medial walls, orbital floor, or a combination? I had both medial and floor, plus some orbital fat removed from behind my eyes. This resulted in incisions in my upper lids, through my bottom lids, and an endonasal approach for the medial walls – an ENT did the latter while my oculofacial surgeon did the two former.
3. How long will I be bandaged? Normally my surgeon bandages both eyes for 48 hours. He only bandaged my right eye (the eye that required slightly more work) because he knew I’d freak out if I woke up “blind.”
4. How long will I need help? I was completely incapacitated for an entire week. I needed my dad and brother around the clock to help me get food, change bandages, apply ointments, manage medications, etc. By Day 2 I could move around enough to get myself to the bathroom, but I didn’t dare attempt to go downstairs until Day 4.
5. What side effects will I experience, even temporary ones? My only complaint about my OD was neither surgeon told me that nerve damage resulting in long-term (albeit temporary) facial numbness. I woke up the morning after my surgery in a panic because the entire right side of my face was numb. It still is four months later. They tell me this is because of the extensive nerve damage during surgery, but that the feeling will return after 6-12 months. I hope it does!
6. How will my nausea be handled? I received Zofran (ondansetron) intra-op and post-op and continued taking it for almost a week because I was unable to keep any food down for the first 72 hours. This obviously made taking the pain meds more difficult, leading to #7…
7. How will my pain be handled? I needed pain medication for two full weeks. They only allowed me to take the heavy stuff (percocet) for the first week, then switched me to a high dose of ibuprofen or acetaminophen (I forget which).
8. When can I resume normal activity? I was allowed to go back to work on a PT basis after two weeks. After three, I went back to FT, but my eyes still tired easily from 8 hours of computer work. I returned to yoga and exercise after the three weeks as well.
9. How often will I be checked after surgery? Since I had two surgeons from two separate practices, I saw the oculofacial surgeon at 2 days post-op (normally it’s one but day 1 was observing a Jewish holiday and my surgeon was observing), one week, three weeks, and then every 2 months. I saw the ENT surgeon at one week, two weeks, and two months, at which point he discharged me since my oculofacial will handle the rest of the surgeries alone.
10. When can I have the next surgery/surgeries? I was fortunate not to need strabismus surgery, so my eyelid surgery was always planned for about six months after the OD. I see my surgeon mid-February, at which point I expect to schedule the eyelid surgery for some time in March. My facial swelling continued to come down for an entire three months after the surgery, so be patient in not rushing into the next phase because you want your face fully healed first.
11. How can I speed up the post-op recovery process? I used drops, elevated the head of my bed about a foot, used LOTS of pillows so I could sleep comfortably upright and on my back, kept a mini fridge beside my bed for water, snacks like yogurt and fruit (after the first 72 hours of puking), used this wonderful ice pack the hospital gave me that wraps around your head and velcros at the back, and kept a humidifier going 24/7 because of the sinus issues I had due to the endonasal approach. I also used a netipot twice a day for the first two weeks but again, that was only because of the endonasal approach. I began using Vitamin E oil on my eyelid scars as soon as the stitches dissolved, and the scars are now completely invisible.I’m going to have to politely disagree with Shirley as to one eye vs. two at a time. As long as your surgeon is willing, you are a good candidate, and you have a great support system at home, I highly recommend getting it all over with at once. All you want to do for the first two days is sleep anyway, so being bandaged and “blind” isn’t so bad as long as you have a short path to the bathroom, and someone who is willing to take care of you – and stay with you – until you can see again. And after those first few days, you can pretty much manage maneuvering around the house, you’re just really slow and easily tired. I was given the all clear to drive after exactly 10 days, but I wasn’t entirely comfortable with heavy traffic and night driving until the day 14, when I returned to work. But that’s just me. Everyone is different.
I posted my entire OD journey on my blog along with photos, and I’d be happy to PM you the link if you’re interested.
in reply to: Personal Experiences Going Hypo Post-RAI? #1176703I had never been hypo before, so I didn’t really recognize any symptoms except severe eye problems. I was misdiagnosed with allergies and an eye infection before finally finding out it was TED and that I was hypo all in the same week. So pay attention to any changes – big or small – in your eyes, vision, etc.
By the way, this all happened six months/22 weeks after RAI. It took my thyroid a long time to take a hike but it finally did.
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