[gatorgirly]

#1059407

I am now one week post-op from my bilateral orbital decompression. I thought I’d be able to post much sooner, but it has been the most physically difficult week of my entire life. Today is the first time I’ve been able to keep my eyes open long enough to turn my computer on, let alone type anything.

Surgery was on Tuesday afternoon and went well, but took an hour longer than expected because I have such a small nose and the surgeons used an endonasal approach to remove the bone between my eyes. They also removed part of the orbit floor on both eyes, and a significant amount of fat from behind each eye, but did not remove the lateral wall – meaning no scars there. They did cut through my upper lid to get to the fat, so I have stitches there that will come out on Thursday but those don’t hurt.

My right eye was stitched shut and covered with a pressure dressing. Normally they do this to both eyes but I was so scared of waking up blind, that they decided to give me a break.

I was very sick the first four days, not keeping any food down except water (and only after the first 12 hours). The pain was out of this world, but fortunately I sleep 23 hours a day for the rest of the week. The right eye stitches and packing were removed Thursday, but I was only able to open my eyes for a few seconds at a time and I could only look straight ahead. Any change in direction hurt the eye muscles so incredibly bad. However, the best part of the whole painful appointment, was realizing that I did not have any double vision. I was told my chances were 50/50, and that really scared all of us more than anyone cared to admit out loud, so we are all so relieved that I don’t have to fight that battle.

I was pretty disappointed that neither surgeon told me my face would be numb for a month or longer. That is the most uncomfortable “feeling” because I can feel someone’s fingers on my skin but there is so much swelling and numbness between my eyes and mouth (including my upper lip/teeth) that I keep biting my lip. Anything that requires chewing is out of the question, but my appetite has finally returned.

Today I turned a corner. I can keep my eyes open, I can look in different directions even though it hurts, and I can eat real food. I saw the ENT surgeon and he cleaned out all the dried blood and mucus, so being able to breathe through my nose is wonderful. He’ll do that again a week from today, and I see the oculofacial surgeon again on Thursday. He’ll remove the eyelid stitches and hopefully we’ll have a more definitive timeline for getting back to work and whatnot. For now, I’m just glad I was able to shower and get some fresh air for the first time in a week.

I haven’t allowed any visitors, so only my family and physicians have seen me, but they all agree the change was immediately noticeable. I see it, too, but it’s hard to see past the swelling, bruising, and bloody eyes. I’m about to post some photos on my personal blog.

For those who can, I would definitely recommend doing both eyes at once if you have a good support system. My dad and brother have checked on me every hour for a week and I am so thankful for that. My surgeon has called me several times to check on me and gave me his cell phone for any questions at night or on weekends, and we’ve definitely used it.

I am supposed to be weaning off the painkillers (Percocet) but the pain is still pretty significant, so I am just taking them less often and also taking Aleeve/Advil to help with the inflammation in my face. I’ll post again after my appointment on Thursday. Thanks to everyone, especially Shirley, who encouraged me to move forward with my TED and for all the good advice. Sleeping with the head of my bed elevated so high and with so many pillows both under my head and under my mattress has been an adjustment but I’m convinced it’s helping!

[Kimberly]

#1174529

gatorgirly – Wow, sorry to hear that you have had such a difficult few days, but glad to hear that you are feeling better now. (And that’s great that you are already seeing a difference in your eyes).

Agree that it’s better to know about any potential side effects and/or pain up front. I remember having an outpatient procedure done once, and the nurse (before the doc arrived) said, “the doctor is going to tell you that this is just a “little stick” — but it’s really “Bee Sting Times 10”. Of course, *she* was the one who was right…and I appreciated the honesty!

Please continue to keep us posted!

[Kells1]

#1174530

Hi G,

Glad you are through the worst and hope you have a good speedy recovery. Kimberly is correct, many surgeons tell people that procedures will only have a few weeks or months of down time when the reality is that some can be a year or longer. I had to have nasal surgery for breathing difficulties and even past a year i could feel i was still healing and the pain and irritation and swelling can fluctuate. Give yourself plenty of healing time and we are all thinking of you.

You’re still beautiful!

*Hugs*

Kells x

[snelsen]

#1174531

Hi, thanks for the news re your bilateral OD. I wonder if doing two OD’s at once is done very often? It is very tempting, not to have to go through that twice! I am SO SORRY about the nausea. Do you know if they medicated you with ondansetron preop and intraop? I have found that is a super drug. Plus the soluble ondansetron by mouth. Anyway, I am glad you are past that.

It is interesting how different the surgeons are, regarding how they do OD’s.
I did not have my eye sutured closed, but I did have it covered with 2×2 gauze, and used cool packs on it almost constantly. And you know that I elevated my HOB (head of bed) for days and days.

I read about the numbness someplace, but I did not have that side effect, and my doc did not mention it either. I was most worried a bout double vision but I had D.V. before the OD. Strabismus surgery after, which was wonderful.

So NICE that your surgeon has called your several times! Not a bit like my surgeon, that is for sure. I also had ENT doc for the medial side.

My other eye is bulging, but I have felt quite scared of having another OD>
I have had so many procedures, and problems with some of them.
**I misplaced your blog, would you PM it to me please?
I look forward to hearing from you after your Thursday appt.
Shirley

[gatorgirly]

#1174532

My surgeon prefers to do both eyes at once to help maintain balance and not take too much from one orbit if both eyes are protruded about the same (mine were). Although this requires a good support system at home and potentially several weeks of vacation/sick time or short-term disability.

I was given Zofran pre-op, intra-op, and got a prescription for it due to the extreme nausea in the following days. I haven’t needed it since the weekend, but the Percocet does a number on me, regardless of whether I have eaten or not.

I notice the most tender spot is now where the big bruises under each eye are. Prior to yesterday, it was still quite numb there so the pain was limited to my eye muscles and nasal area. Now, it seems as the feeling returns, the pain comes with it. So I am trying to ice there more but it’s a tricky spot to get to.

I will post an update after my stitches are removed tomorrow.

Shirley – I am about to message you the link to my blog. The photos are nothing if you’ve had an OD or seen the recovery of one, but they are pretty gross (in my opinion).

[tnapavlu]

#1174533

Gator,

Thank you so much for posting the update from your surgery. This helps me a lot, since I am to have my OD done in November. I’m wishing they would just do both eyes at once but unfortunately they said they can only do one at a time.

I hope you recovery starts to go better for you, and the numbness goes away. It, however, sounds like you have an incredible support system. I’m so happy for you, keep us posted!

[gatorgirly]

#1174534

Well I’m silly. My stitches didn’t need to be removed today because they are dissolvable! I noticed last night that the stitch in my right eyelid was completely gone (i.e. dissolved). The left one was almost dissolved so today, the medical assistant snipped the ends but left the suture so it wouldn’t bother me but could completely dissolve over the next day or so.

The rest of my appointment went well. My surgeon is so pleased with the outcome. Prior to surgery, my left eye was at 23mm and my right at 25mm. They are both even at 20mm now, and the symmetry almost pleases me more than the decompression itself.

I am cleared for driving, work, etc. I still cannot wear my contacts and I hate wearing my glasses and bright lights still bother me as my eyes heal, so I will limit my driving to only short trips (work is 10 mins away) for a couple of weeks. I will return to work on Tuesday (Monday is a holiday for us in academia) on a part-time basis. I will probably do half-days for a week or two until I have regained my strength, both overall and in my eyes, which tire easily.

I go back to see the surgeon in six weeks. Normally he books 2-3 months out from this point in the recovery process but admitted he is eager to see my progress sooner rather than later. I am to massage my lower lids up for several minutes a day as they are pretty stiff, and will almost certainly need eyelid surgery since my upper lids are somewhat retracted – enough for it to be necessary but not enough for it to bother me as far as exposure or sleeping. Fortunately, my eyes have always fully closed and still do.

He said the feeling in my face may not return for several months. Ugh, I thought he said a month or two. It is so uncomfortable as I keep burning and biting my upper lip, but that should get better as the swelling comes down and my upper lip isn’t so enormous (I usually have no lips!).

Otherwise, I am doing well. The pain has gotten a lot better and all I am taking for it now is some extra strength Tylenol and occasional ibuprofen (I have a history of ulcers so I’m limiting my NSAID use) for the inflammation. It has now been 10 days and I feel so much better every day.

[Kimberly]

#1174535

gatorgirly – Thanks for the update…hope that all goes well with your return to work!

[snelsen]

#1174536

Gosh, what wonderful news! That is WONDERFUL. I do suggest you remind yourself and give yourself permission to make a decision to work a shorter day if you go back to work and feel terrible. You had TWO big surgeries, AND anesthesia (did you have a general, presume so) and it impacts endurance and energy more than you probably realize right now.
My two cents!
Shirley

[gatorgirly]

#1174537

Yes, I had general anesthesia. I agree wholeheartedly about giving myself permission to bow out earlier than 12:30 if I need to. My boss is really great and if I call on Wednesday and say, “I just can’t do it today,” there will be no guilt trip from her. My co-workers are less empathetic, but their opinions really don’t matter in this situation, so I’m not trying not to care, especially since I’m using almost all of my paid time off for the year (the fiscal year just began July 1, so I’ll have almost no time off to last me till June 30). In all honestly, this “break” from work has been a blessing in disguise – yes I needed it physically to recover from surgery, but I also mentally needed it. My job is emotionally exhausting and I don’t need a mental breakdown or an ulcer.

I’ve been very dizzy all day, not sure why, but if it subsides later or tomorrow I’m going to try some gentle yoga at home to start slowly getting my strength back.

[gatorgirly]

#1174538

Just another short update: I began driving very short distances on Friday. At first, I felt very nervous because although I have peripheral vision, it hurts to look in any extreme direction, so I was turning my head away from the road in order to look in other directions. It was nerve-wracking to say the least. Night driving was easier because my eyes are still sensitive to bright lights. However, I drove myself 10 miles to my follow-up appointment this morning and then to work for the first time in two weeks. Half-days for now.

The follow-up was with the ENT surgeon. He looked way up both nostrils and said they are healing but that the left side has some scar tissue but nothing that should affect me. My vision is much stronger and it hurts less to look around, but my eyes still get tired and sore pretty easily.

I see both the ENT and oculofacial surgeons in six weeks, or sooner if I have any problems. I will see how half days at work goes this week and make a decision on Friday about next week. They are both pleased with my progress. Despite being in very rough shape for the first week, I have come a long way exactly two weeks out from surgery. My bruises are almost completely faded, and you can’t see them at all when I wear my glasses – I can’t wear contacts until next week.

The numbness is pretty bothersome but it’s only my right side and only my cheek – from just below my eye to my upper teeth and gums. This will probably persist for several months, which means drinking everything through a straw and eating in private, but I can feel my skin ever so slightly so both surgeons say that’s a good sign.

At the next appointment with the oculofacial surgeon, I imagine we will start making plans for my eyelid surgery. He has me massaging my lower lids up, but my upper lids are still noticeably retracted. He says some of this will be relieved as the swelling comes down, but we know I’ll need the surgery to at least remove the fat deposits between my eyes and eyebrows.

All in all, I am so pleased with the results and in particular, with my surgeons’ compassion, professionalism, and expertise. I have gotten so many compliments from people who knew me before TED and have been following my daily updates and photos on my blog, and the best birthday present on Sunday was my best friend telling me that I looked like I did when I was little. She just kept seeing the 12-year-old me instead of the 25-year-old me before Graves. I’m OK with that!

[Kimberly]

#1174539

gatorgirly – Thanks for the update…that’s great news that you are back to driving, although I can imagine that would be a little nerve-wracking! And that was a nice compliment from your friend…hope that you continue to see improvements day by day!

[gatorgirly]

#1174540

Sorry to resurrect an old post, but I wanted to update y’all without repeating myself all over again.

I saw my oculofacial surgeon this morning. It has been seven weeks since my surgery. The upper eyelid stitches (which dissolved) are completely healed and the scars are completely invisible, which is somewhat surprising since I am so fair-skinned and tend to get puffy, pink scars from paper cuts or razor mishaps.

Everything else is as it should be. The feeling on the right side of my face continues to return in the form of that pins & needles feeling when your foot wakes up after having fallen asleep. It’s not painful, but it’s also not comfortable, and it’s pretty constant. He said this could last up to a year. Oh well.

I have very minor diplopia (double vision) when I look as far up as I can without moving my head. Who cares? I don’t, and he doesn’t either, because who the heck looks all the way up without moving their head? So we’re not touching that, and he continued to profess how delighted he was that I didn’t have any double vision that affected my eyesight or daily living. He was quite concerned this would happen as a result of removing so much bone and fat.

He wants to wait six months before performing the upper eyelid surgery, which I do need, but he said there is still some swelling that will continue to improve over the next few months. He also doesn’t want to perform any surgeries while my thyroid levels are unstable, which they continue to be. I’m just glad they behaved the week of my surgery, for the first and only time in three years. I was really hoping I could have the surgery soon, but I agree it’s best to wait until all the swelling is gone and my levels are stable.

My proptosis before surgery was 23mm in the left eye, 25mm in the right eye. Both eyes are now sitting pretty at 19mm. I have no dry, only some dryness, moreso than before surgery. I can no longer wear my two-week contacts for the full two weeks…more like 10 days. I am going to inquire with my optometrist about dailies, at least for the next few months. The surgeon gave me drops but I imagine the dryness is because of the minor upper eyelid retraction.

All in all, he is pleased with his work and even more pleased with my progress and realistic outlook on my situation. He knows I’m eager to be done with surgeries and back to my pre-TED face, but he appreciates that I am educated and informed on how this whole process needs to go.

[Kimberly]

#1174541

gatorgirly – Thanks for keeping us updated! Yes, the single vision is much more important straight ahead and gazing down.

Hopefully, you will continue to see some improvement on the tingling issues. And I hope that you can get your levels stabilized so that you can get the final procedure done…and put all of this behind you!

Take care!

[Author]

Posts