[scanders]

#1060481

Me again with more questions on this TED journey. Saw the eye doctor today for further eval of need for OD, especially of right eye, per recommendation of strabismus surgeon. In April, last time I saw this doc, he said he didn’t think it was needed, but would continue to observe. In May I saw strabismus eye doc who said disease was “only moderate”, but he was concerned about my right eye especially maybe needing OD. He can’t do muscle surgery, of course, if OD is needed. Two months later the first eye doc says it’s now severe and I do need OD, not just right eye, but both. It’s not an emergent situation impacting my optic nerve, but more room is needed for muscle surgery to be effective. Does that sound right? I have had intermittent throbbing, especially my right eye, over the past month, with increased surface pain, no matter how much I lubricate. Steroids have never been suggested. Maybe because it’s not an emergency situation? I’m just trying to take this all in. I’m not too keen on this surgery, but will do it if necessary to get to step 2, muscle surgery.

Next, after making such a big deal about my thyroid being stable. he said he’s only worried at this point that I don’t become hyper. I’ve been running low, but WNL. I just have felt rotten with brain fog. I finally feel as if my IQ has risen by about 20 points over the past few weeks (since MD ordered dose decrease as I was at risk of becoming clinically hypo), but he’s worried I’ll become hyper with dose reduction. (This is the dose I became hyper on this spring–I’m a little nervous myself, especially with how quickly I seemed to improve, hopefully the thyroid hormones know when enough is enough and don’t rise too high…) Well, that’s all well and good, but am I asking too much to feel well, and then be able to fix my eyes, too? The next step is a consult with an ENT surgeon that he works with in about 2 weeks, as the plan is to do this nasally. What sorts of things should I be asking and/or considering? Of course, I have no idea what sort of time frame anyone is talking about, and it’s just a consult.

Thanks in advance,

Christy

[snelsen]

#1182864

HI CHRISTY!
I’ll try to catch up to you tomorrow. JUST beginning to pack for an early flight to Iowa.
Shirley

[gatorgirly]

#1182865

Shirley can comment on the OD-to-strabismus journey, as she had both.

I had OD on both eyes in September 2012, and mine was also done by both an oculofacial plastic surgeon and an ENT surgeon, and done nasally (I think the term is endonasal).

Questions you should ask:

1. Are they removing fat, bone, or both? If bone, which bones? I had my orbital floor and medial walls removed, as well as fat from behind my eyes. I did not have the lateral walls removed as that requires scars in the “crow’s feet,” which I am still too young to have and thus my surgeon felt it would provide no added benefit.
2. Will it be done in the office, surgery center, or hospital?
3. Will they file this through your insurance as medically necessary or cosmetic? It should be medically necessary but ensure the surgical coordinator in the office knows this, otherwise insurance may deny your claim.
4. Will you need to stay overnight? If you can go home, will you need someone with you? I would highly recommend you do. I was in a LOT of pain and was really sick from the anesthesia, and needed my dad to clean up a few times and do things like bring me new ice packs and let my dog outside.
5. Will your eyes be stitched shut? No one told me my eyes would be stitched shut, and I freaked out so much thinking I was blind that they ended up removing the stitches from my left eye. If either eye will be stitched shut, consider having someone stay with you until the stitches are removed.
6. Will they give you any sort of ice packs or head wraps? I got this great wrap that velcroed around my head and could fit small, gel ice packs on each side – one for each eye. You don’t want actual ice cubes because they will be too hard and large on your sensitive, sore eyes. Bags of frozen peas and corn work well, too!
7. What pain meds will you get, and will they start them intra-op? You most likely want this so that you aren’t immediately in pain when you wake up. I tried to be a hero and was miserable, and the pain caused me to clench up which sent my heart rate and blood pressure through the roof. Some fentanyl and I was good to go.
8. Can you fill the prescription for pain meds and eye ointment (for the incision sites) ahead of time or will someone be able to pick these up for you? Also, who will put the ointment on your incisions the first couple of days, especially if you are patched or stitched?
9. How long of a recovery period should you expect? I took two full weeks off work, and needed every last minute of those. I went back to work half days during the third week, and full time the fourth week.
10. Because your surgery will be endonasal, will they provide you with a netipot/sinus rinse or do you need to buy this yourself? I used mine twice a day and for about a full 2 weeks, blood and mucus would come out every time – what a relief, honestly.
11. What can you do to speed up the recovery process? Eating protein, taking walks, drinking water, switching from pain pills to ibuprofen or tylenol, etc.?
12. When can you start massaging the incision sites to prevent scar tissue from forming? How often should you do this?

I’m sure there are more. I blogged all about the surgery (and the subsequent eyelid retraction surgery), so let me know if you want the link.

[scanders]

#1182866

Thanks gatorgirly! Great list of questions. I would love the link to your blog. The more I know what to ask and what to expect, the better I can manage this. I think I still have some time. I emailed the doctor a question, and he said while it’s not an emergency right now, we needed to “start the conversation” because that could change, and he wanted me to be “ready”.

[gatorgirly]

#1182867

Also, your surgeon may not mention it (mine didn’t, but snelsen did!), but you’ll want to raise the head of your bed. I put the head of my bed frame on blocks, and also put pillows under my mattress. After my surgery, I slept with what they call a “boyfriend” pillow. It’s that really 80s-looking pillow that has two short, stubby arms. I propped that and my regular bed pillows all around my head so that I could sleep almost sitting up, but it was such a cozy cocoon that I felt like I was sleeping in a cloud. Made a HUGE difference despite my pain and discomfort (and gushing blood any time I leaned too far forward).

PM’d you a link to my blog

[scanders]

#1182868

Thanks gatorgirly! Very helpful. While I’m not sure on a time frame, I think I just had a reality check as far as what the eye doctor was saying. I wasn’t sure I was seeing this as necessary, at least not for both eyes. Or I was hoping it would just “go away”. I just found a few “selfies” from November, when I started with intermittent double vision, and took some now. Front and side views. I can’t really see it in a mirror because of the constant double vision I have now. The bulging is really prominent, and my eyes are really pushed out and down. Not the worst I’ve seen, looking at images on the internet, but bad enough. I now get why people seem to be staring or doing a double take. The worst eye has gotten pretty blurry, but the nerve still looks good, I’m told. He says it’s gotten so blurry because it’s so out of alignment. I’ve sort of been avoiding looking, knowing there’s nothing I can do about it.

Anyway, I think seeing the pictures is helping me to move from denial to acceptance that I’ll need the OD barring some miracle. Sigh…

[gatorgirly]

#1182869

Oh! Thanks for the reminder! Pre-TED photos are SO important for your surgeon. Mine actually brought one of mine into the OR with him to make sure he took out enough fat and bone to return my eyes to their pre-TED state. Looking at me before surgery, my eyes didn’t seem that bad to strangers. I was always complimented on my “big, pretty eyes” but they were my eyes – I always had very small, squinty, deep-set eyes and my surgeon was shocked when I showed him my headshot from before TED. Happy to report my eyes look almost as small and squinty now almost 2 years post-surgery!

[scanders]

#1182871

OD will eliminate the eye pain, I hope? It’s not getting any better with NSAIDS, and it’s wearing a bit on me as it becomes more frequent and more painful. (My husband said he’s noticed me wincing more often. And I thought I’ve been managing this so well…) This could be one more reason to move me to the acceptance column to move forward with this.

[gatorgirly]

#1182870

I can’t speak to that, as my pain resolved when prednisone took care of the massive swelling. However, I would imagine that for you, OD will create so much extra space that the pain should be eliminated. Another good question to ask the surgeon. Of course, you might experience quite a bit of pain with the surgery…although some do not (snelsen!) even need the pain meds.

[scanders]

#1182872

Maybe the NSAIDs were doing something, after all. I stopped them 2 days ago, since I wasn’t sure they were doing anything for my back, which is why I took the Naprosyn in the first place. No change with my back, but I’m sure feeling my eyes! I’ll add this to my list of questions. (I’m concerned that this has increased this much, though.)

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