[gatorgirly]

in reply to: doctor finally called – mass below thyroid #1178965

I had a mass on my thyroid in April 2011, two months after undergoing RAI. By the time RAI finally worked six months later, it took the mass down with my thyroid and there was nothing left to biopsy. I can’t remember where you are in the treatment process but I hope you get good news soon. And if not, you’re in competent hands.

[gatorgirly]

in reply to: Orbital Decompression surgery #1178396

Yep, I had mine (both eyes at the same time) done this past September. It was a 100% success and I will have the upper eyelid-lowering procedure sometime this summer.

Shirley’s advice was SO helpful. I took it a step further and used what they call a bedrest pillow (that weird looking fuzzy thing with arms) until my normal pillows so I was sleeping at almost a 90-degree angle, but still comfortable. This relieved the swelling so well. The hospital gave me a neat little velcro headwrap that held a small bag of ice on each eye so that I could still ice my eyes while keeping my head elevated. I kept a humidifier running since part of my surgery was done endonasally so I wasn’t allowed to blow my nose or sneeze for two weeks. I was too nauseated to eat for the first 48 hours but that’s because no one in my family tolerates anesthesia well. I was given Zofran (anti-nausea meds used primarily for chemo-related nausea) but without eating, the painkillers made the Zofran almost useless. I used all the pain meds (Percocet) they gave me as the pain was quite severe for the first week, but Shirley experienced very little so it all depends on your pain tolerance and medication. By Day 8, I switched to ibrupofen. I was given the OK to start driving again and returned to work part time on Day 14, and returned full time on Day 21 and was able to start wearing my contacts again. That was also the last day I had any noticeable bruising whatsoever.

I received SO many compliments from people who knew me before my eyes popped out from TED. The people who didn’t know what I looked like before TED just assumed I had “big, pretty eyes” and thought the surgery was cosmetic. However, the people who know me best all agree I look just like my old self now.

The only side effect was facial numbness on my right check. The right eye was much worse and required more extensive “digging around” so there was nerve damage. I am told feeling should resume within 12 months of the surgery but honestly there has been very little improvement in 6+ months so I am losing hope. However, I hardly notice it until I’m eating or brushing my teeth or washing my face. Someone else on here is experiencing the numbness as well, but I think we’re the only two who have mentioned it.

If you’d like to read my personal blog posts about the process and recovery, PM me and I will send you the link.

Good luck, you’re going to do great. It’s a difficult procedure and recovery for some, but it is so worth it!

[gatorgirly]

in reply to: Uncaring husband(have to share) #1178113

I just want to say I have no idea what it’s like to be married let alone be married to someone like your husband while dealing with Graves’. However, I was in a long-term relationship with my now-ex-boyfriend when I diagnosed and hospitalized. I was very sick, but he was too busy running around with his now-wife to drive six hours to come be with me at the absolutely worst time in my life, despite knowing all my family and friends were 1,500 miles away. I really think it’s a combination of A. most people’s lack of understanding of how serious Graves’ is and B. being a total jerk of a guy.

What I needed during my recovery from Graves’ was to surround myself with positive people. I slowly but surely eliminated negative people from my life – my then-boyfriend, my malicious employer (I quit), and the “friends” who couldn’t quite grow up and be there for me. Even if it means taking some time for yourself -staying with a relative, a girlfriend, etc., for a long weekend or even better, a week or two – it might help. Or PM me your address and I’ll come leave some dog poop in his favorite chair.

Edit: I forgot to mention that if you use Google Chrome as your browser, there is a feature called incognito mode. It allows you to browse without having your site history logged. Once in the browser, press Ctrl+Shift+N (Windows, Linux, and Chrome OS) and ⌘-Shift-N (Mac) to open an incognito window – a little spy-looking guy shows up in the upper left corner so you know you’re safe.

[gatorgirly]

in reply to: TED again? Double vision again? Not sure I can do this again #1178176

Shirley, this makes me so sad and angry. TED is a total buzzkill, and no one should have to deal with what you have been though. I sometimes imagine lighting my (now-deceased) thyroid on fire the way we burned all of our handouts and papers at the end of grad school. I apologize for saying my TED couldn’t have come back earlier today – I forgot that it can show up uninvited whenever it darn well pleases. I’m sending hugs and positive thoughts your way. Please keep us updated. Feel free to PM me if you need someone to talk to.

[gatorgirly]

in reply to: Goodbye and so much good luck to all. #1178134

amosmcd wrote:

Kimberly is one person (who also suffers from Graves) moderating a large, busy forum. Unless you think you can do a better job and step up to the plate to join her, I think any criticism needs to be tempered by compassion for what a load she has chosen to bear to help us have a forum at all.

+1

[gatorgirly]

in reply to: New double vision months after orbital decompression #1176695

Shirley, I’m not developing TED because I already had it and fortunately it went cold quickly, hence the OD in the fall. This is an old post from January

Oahz, I no longer have any double vision, even when I’m tired or have had a few drinks. It seems as though it was just extreme eye muscle fatigue. Since it was worst around the holidays, that makes a lot of sense.

My eyes are 100% and all I need now is the upper lid lowering surgery, which is probably going to be in late summer. I have lots of weddings and showers and work events coming up, and my thyroid levels continue to be wacky, so my surgeon and I agreed to wait until mid-June to schedule anything.

[gatorgirly]

in reply to: Tell the Truth…. #1177880

Like Kimberly, I don’t let being single define me. I did choose not to seek out a relationship while I was going through the worst of my TED because it left me feeling very insecure about myself. Both because my eyes look weird and because the prednisone I was taking to reduce the eye swelling made me gain a lot of weight, have acne for the first time at age 26, and have a puffy “moon” face. However, now that I have OD behind me and am slowly but consistently losing the excess Graves’ and prednisone left me with, I find I am happier and thus more attractive to others, and am now actively dating again.

My thyroid levels continue to be unstable. I had RAI in February 2011 and have not gone more than six weeks without having to adjust my Synthroid dosage. It’s not anyone’s fault – I take it religiously yet my body refuses to cooperate. However, on any given day, I feel 100%. It’s almost as if I’m so used to fluctuating thyroid levels that I no longer notice them. I had the worst cold two weeks ago and was out of work for four days. But my dad and brother (who I live with) also had the same horrendous cold. It was almost reassuring to be sick like they were because it was finally something NOT caused by my thyroid…or lack thereof.

Everyone tells me I will find him when I finally stop looking. Maybe you will, too

[gatorgirly]

in reply to: Fluorescent lights #1177904

The fluorescent lights started bothering me after my TED onset as well. My co-workers were kind and let me unscrew the lights above my cubicle. There were days when I had to wear my sunglasses at my desk, though. See if your co-workers/management would mind you unscrewing or even replacing the lights near your desk with my TED-friendly ones.

[gatorgirly]

in reply to: Anyone with TED 12-18months and considering or has had OD surgery? #1177229

So the prednisone worked really well for the immediate, severe bulging, swelling, pain, and dryness. However, when my eyes retreated and stopped hurting, they were still not “my eyes.” Which is why we didn’t do another round of prednisone – 50mg tapered down over six months was a lot but was only going to help so much. So maybe that’s why they haven’t prescribed it again for you.

I agree 150% on having both done at once as long as you have a good support system at home since you will likely be stitched shut or at least blinded by gauze for a few days.

Fingers crossed for you!

[gatorgirly]

in reply to: OD update #1177394

Glad to hear everything is progressing mostly well. As you know, I still have facial numbness on the right side six months later. It’s frustrating.

As for your glasses comment, OD does not improve or worsen vision (aside from double vision). Unless you mean you’re just sick of wearing your glasses post-op. I was, too! Fortunately I could wear contacts again after three weeks but had to switch to dailies do to dryness since surgery, but eyelid lowering surgery should relieve that somewhat.

[gatorgirly]

in reply to: Anyone with TED 12-18months and considering or has had OD surgery? #1177216

I think runlacey on here had radiotherapy on her eyes. My neuro-ophthalmologist told me if my eyes responded to well to steroids, they would respond well to radiotherapy, but if they did not respond to steroids, radiotherapy would be of no use either. Fortunately, steroids (oral prednisone) did the trick.

[gatorgirly]

in reply to: 2 decompression surgeries……. #1177022

That’s a real bummer. My surgeon is the most amazing physician I have ever met, and I wish I could refer everyone with TED to him.

Kimberly is probably correct, but I am back to exactly the way I was before surgery and TED–minus the extra weight Graves’ and prednisone have blessed me with, bit that’s a work in progress. My friends and family can all confirm this fact. The best compliment I received after my surgery, while I was still bruised and half-blind, was, “Oh my gosh, you look like you did when you were little.”

Having TED for a year-and-a-half is NOT a long time. Some people have it for many years before they are stable enough for surgery.

I have never once heard OD referred to a cosmetic procedure. TED is caused by a medical condition, thus making it medically necessary. I paid not a single dime for my surgery, which was around $20,000 billed directly to my insurance company. I would ask the office’s surgical coordinator about this.

Three-wall means lateral wall (bone outside edges of the eyes), medial wall (bones between nose and eyes), and orbital floor (bone under eyes).

Anyway, I’m so sorry it didn’t go well. I would suggest you keep your appointment with the other surgeon and see how that goes. Did you get any information as to how many OD surgeries either of them do, yearly?

[gatorgirly]

in reply to: if you had a lateral wall decompression surgery, please reply #1177243

I did not have lateral wall (medial, floor, and fat behind eyes) but I almost did until my surgeon went to a conference a month before my surgery and spoke to several other surgeons who agreed it wouldn’t yield enough of a benefit for my particular case. The way it was explained to me, they make incisions in your crow’s feet (which I do not have…yet) and remove bone from the inside, not an entire chunk. I would compare it to sanding a wall versus cutting a hole in it. I was reassured neither I nor anyone would ever be able to tell there was bone removed, except for the fact that my eyes were back where they belonged.

[gatorgirly]

in reply to: 2 decompression surgeries……. #1177019

Can’t wait to hear how your appointment goes tomorrow!

[gatorgirly]

in reply to: Orbital Decompression and Anesthesia #1177198

My right eye was worse than my left, but your symptoms sound a lot like mine did. The pain and pressure ceased shortly after starting a large dose of prednisone (50mg tapered over the course of several months), but the tearing was quite annoying.

First of all, what kind of specialist are you seeing? You mention he operated on your eyelids so I’m assuming he is an oculofacial surgeon? Typically we see a neuro-ophthalmologist or at least an ophthalmologist experienced with thyroid eye disease (TED) as opposed to an optometrist or an optician. An oculofacial surgeon who does TED surgeries is also a great resource. I lived in FL during my TED onset and had a great neuro-ophthalmologist but when I moved back to MA, there weren’t any around so my oculofacial surgeon took over, doing all the same tests to ensure my eyes were stable and in the cold phase for a full year before operating.

I had my bilateral orbital decompression in September 2012. I blogged about it and would be happy to share the link with you – just PM me. It was major surgery so I was completely asleep under general anesthesia. I actually had two surgeons – my oculofacial and an ENT surgeon, who did a portion of the surgery endonasally. It took about 3-4 hours and since it was an afternoon surgery, I had been fasting for about 14 hours beforehand and ended up quite sick when I woke up because no one in my family tolerates anesthesia well. But my pain was minimal and I slept for about 48 hours except to use the bathroom and attempt to eat (which didn’t go so well those first 48 hours). I used percocet around the clock as the pain became quite significant, but my surgery ended up being much more involved than planned, so my pain was more severe than most. I think Shirley (snelsen on here) said she didn’t even need painkillers. After a few days I was up and about, but slow. By Day 7 I felt human again but still slept about 16 hours a day, mostly because my eyes tired so quickly and easily. I went back to working part time (half-days) by Day 14. On Day 21, I went back to working full time, doing yoga, and exercising. I felt 100% minus the facial numbness on my right cheek which still persists to this day. I was told this could last 6-12 months.

I have worn contacts for three years, and only had to stop wearing them for the initial 4-6 weeks (I don’t remember the exact duration) of my TED onset because my eyes were so swollen and inflamed, and then for three weeks after my OD while my eyes healed. I felt ready to wear them at the 2-week mark but my surgeon wanted me to wait one more week. I also hate my glasses and how I look in them, so I was eager to get back into my contacts. After the surgery, I switched to daily contacts to reduce the likelihood of any future issues with my eyes or vision.

I’m a little confused as to why you had the eyelid surgery first. The normal progression of surgeries after the hot phase of TED is: 1. orbital decompression 2. strabismus surgery to correct double vision (if needed – I do not need this one since I don’t have double vision) and 3. eyelid surgery to lower upper lids.

Sorry I wrote a novel. My blog has more detail of the entire post-surgical process and is a little more organized.

[Author]

Posts