[scanders]

#1060493

So they’ve already scheduled the OD for September 12, which is a day both the ENT surgeon and the oculofacial plastic surgeon are both available. Apparently getting their schedules to sync is difficult. (It’s also my birthday, which could be a negative, but I’m choosing to look at it as a step toward getting the muscle surgery and single vision.)Finally had my first set of normal thyroid tests, an the endo has given the surgery her blessing.

The ENT will be the lead surgeon it sounds like. It will be done endonasally. He says it is basically sinus surgery. No dressing, no swelling or bruising, only off work for 1 week. Might be some pain. No exercise for 1 week. No netipot or irrigation. Sounds too good to be true from what I’ve read about others’ experience.. Is it? Or has it changed some for the good? (Hope so…)

[Kimberly]

#1182938

Hello – I’m sure this is *not* how you’d planned on spending your birthday, but hopefully, this will be the “beginning of the end” of all of your issues with TED.

I know that when we had our seminar Mass Eye & Ear Infirmary in Boston this spring, Dr. Ben Bleier mentioned that it is possible to do the OD via endoscopic nasal surgery. Hopefully, others here will be able to chime in with personal experiences.

Wishing you all the best!

[Raspberry]

#1182939

Only one week off, that sounds wonderful amazing – I hope everything goes wonderfully!

[gatorgirly]

#1182940

Congratulations on the surgery date. Every surgeon, patient and surgery are different, but my medial walls OD were done endonasally (just like sinus surgery) and I absolutely needed a NetiPot. My nose bled a lot the first few days. My orbital floor was done through my lower eyelids, so that’s where all my bruising came from – hoping you are free from bruising and swelling like he promised!
I say this is definitely a positive. My OD was about a week-and-a-half before my birthday, but I looked at it as a new age with new/my old eyes!

[scanders]

#1182941

Both medial wall and orbital floor will be done endonasally. The surgeon said he’s found the irrigations and Netipots caused a higher incidence of infection, which is why he doesn’t recommend them.

I am trying to see it as a positive, but I’m still adjusting to “no hurry, just starting a conversation so we’re ready just in case”, to scheduling a date within a few weeks. (I’m a control freak. I’ve never been drunk, let alone unconscious. )

Mostly, I’ve read that the eye disease should be inactive prior to surgery, excepting the need for emergency decompression due to optic nerve compression. This is the question I need answered in my mind. Is it inactive? I don’t want any more surgeries than I have to have. I’ve noticed some changes in the past few months. (More pain, the left image is now diagonal down instead of diagonal up, stuff like that.) But, I don’t know what changes the eye doctors look at–maybe those are no big deal. The strabismus doc I saw at the end of May said there was still a lot of inflammation and redness. (I thought they looked pretty good at that point, so it goes to show what I know.) But, double is double, and with a lens occluded like I have, it doesn’t really change anything. But I have a call out to them just the same to ask the question and put my mind a little more at ease that this is the right time to do this. The eye surgeon making the recommendation was recently named one of the top doctors in Mpls/St. Paul magazine, which I think is a ranking by his peers. But I think when all he’s done is press on my eyeballs for the last two visits with him, and the first time say it’s not needed, it’s a big deal, avoid if possible, etc. and now it is needed, and just like sinus surgery, not a big deal, I think that’s why I’m struggling a bit with this. While those visits were about 4 months apart, he also said nothing’s really changed, but his nurse did the exam (except for his pressing on my eyes.) I think the strabismus surgeon who sent me back for reevaluation for OD may be what’s driving this decision. (He was surprised it wasn’t recommended with the prior visit and was concerned if he’d have enough room to do the muscle surgery, or something like that.) And, I can look in the mirror and see a pretty scary eye looking back, and I’d have to be pretty unobservant not to notice the double takes and staring people do. Even with the film on my lens you can see a big, turned in and down eyeball. So I guess I’m not questioning the “if” it’s needed, just the “when”.

Or, I’ve been trying to find research on this, when doing the surgery totally endonasally like this, does it truly not matter if the disease is inactive or not? The ENT surgeon said it didn’t matter, but last time I checked the “E” is for ear, not eye. Maybe there’s a new standard and I’m fretting over nothing?

Sorry for the rambling. Guess I’m not as into the acceptance place yet as I thought I was.

[Raspberry]

#1182942

Maybe it would help if you wrote down your biggest concerns and insisted on appointments to address them before moving forward? Even get a second opinion? As long as you aren’t in danger of damage if you wait you still can have time to do this. You deserve to feel confident in your doctors and the direction you are going.

[snelsen]

#1182943

I am wondering if the exams the nurse did, show the indications and changes that prompted the doc to decide to do the OD. I imagine that was reported to the surgeon, he pressed on your eyes, may have encountered more resistance than before,and decided it was time to do the OD. I know we have corresponded before, but I don’t recall the time frames. I know you have been super miserable. it is absolutely true, what the strabismus doc said, they need “room” to move the muscles. That room is made by making the orbit larger, so the eye goes back where it is supposed to be.

IT is not uncommon for the ENT surgeon to do the nasal side, I would be happy (and I was) about that, it is “their” territory, the oculo facial surgeons are leaning toward this more and more. And they do the superior, inferior, and lateral sides. But the make the decisions based on CT scans, and they are also doing a CT during the surgery. I was HAPPY to have the ENT surgeon do the nasal side.

Yes, it is kinda “like” sinus surgery, but I think much easier, cause for OD, you don’t have your nose packed, which always occurs during sinus surgery. People hate that.

Yes, of course it is a challenge to find a compatible date. Not a bit unusual, other than I am surprised they found a date so soon for you. Lucky you.
Just think of trying to find a time and day when 3 friends are available at the same time! O.R. schedules are planned waaaay out! People need to arrange work with their jobs, care for kids, blah blah. And, maybe not early because of staff and doc vacations, kids are back in school then.

I’d be precautionary, though with exercise, I’d wait more than a week. Lots of stuff done in there.

ENT did USED to be EENT, years ago,then the first “E” branched out!

The OD IS the signal procedure that means you can move ahead with strabismus surgery, which I have said before that gave me my “LIFE
back. You have to heal for one before you have the next one, the measurements need to be accurate. Then it takes a bit of time to get glasses (if you wear them) but you will notice the SINGLE VISION right away, at least most people do.

I think a realistic recovery time for an OD is at least 2 weeks to go back to work full time, and you need help for the first week, there are lots of posts, including mine, about how I handled post op are and what worked and my suggestions.

And, if you are really freaked about moving forward, and don’t want to do this, then postpone it until YOU are ready. I was so very ready, cause it was moving on to single vision.
Shirley

[scanders]

#1182944

Thank you all for your sound advice and suggestions! The people on this board are such a blessing, and resource! I feel calmer already.

I do have a few questions that I want to ask the eye surgeon. I think when I get those answers, I can feel at ease with it. Part of me is still apprehensive about the timing (is the eye disease inactive? Does it even have to be for this part?) Part of me is sooo ready to move on and get to the next step after this and (hopefully) single vision. And as I’ve had more pain over the last few months, I’m hopeful that will decrease. I suppose the eye doc was just trying to “ease” me into the idea. Maybe he didn’t know it would come together this quickly, either, since the scheduling was initiated by the ENT office.

I’m fine with the ENT doing the actual nasal surgery. And I have enough time in my extended sick leave “bank”, as I’ve never touched it, so 2 weeks would be doable as long as the doc gives me documentation that it’s necessary. I’m preparing and assuming I’ll move forward–CT is done, pre-op is scheduled, FMLA paperwork is in progress, etc… I just need those few questions answered to feel totally at ease.

Shirley, how long did it take after OD before strabismus surgery could happen? And yes, I think I’ll need new glasses. I’ve had these glasses for over 10 years. My prescription had changed a little, but since I primarily wore contacts, I could get by with my glasses as they were. But, I was at a conference this week, and I couldn’t see the projection screen with my stronger eye and my glasses, plus, I had to look up a bit to try see it. Back to choosing neck pain from chin way up, or headache from resting my neck and trying to look up with my eyes. That was from trying to see the speaker, and the larger letters on the screen. Anyway, it was too blurry to see most of it, so I’d anticipate it will be time to get new glasses when the dust settles.

I think I’ve read most of the posts regarding post op that I could find on this board, as well as gatorgirly’s blog. The information from the surgeon’s office is pretty scanty compared to the real life answers on the board, so I’m especially grateful folks have been willing to share here. Maybe I can return the favor when it’s my turn. Thanks again!

[Kimberly]

#1182945

scanders wrote:

Part of me is still apprehensive about the timing (is the eye disease inactive? Does it even have to be for this part?)

I really wish there was a concrete answer for this, but the decision seems to be part art, part science. Some docs will use antibody testing (TSI); others do not think this information is helpful. This is a nice piece from a few years ago on TED:

Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770865/#__ffn_sectitle

The article notes that stable findings for 6 months indicates that a patient has passed into the inactive phase, but it does note that every patient is unique and that “no reliable test or sign exists to determine when the inactive phase has begun.”

I know it’s frustrating to make such a big decision based on such imprecise criteria; I guess the important thing is to make sure you have a doctor that you trust and that all the docs involved are aware of any progression of symptoms you have personally noticed.

Take care!

[snelsen]

#1182946

My experience is that, when you notice there have not been further changes in your eyes, subjectively or by exam, you are good to go with surgical procedures. If they are changing, i.e., bulging more, hurting more, the measurements they take, especially for strabismus surgery will not be accurate. And if they do an OD, and the muscles continue to harden and enlarge, your eyes will again bulge, for that is the only way they have to go when things get crowded…is OUT!
Shirley

[scanders]

#1182947

Surgeon says the criteria for inactivity is somewhat vague, and that I’ve been technically by exam pretty stable. He also said they decompress enough “so that future swelling does not affect the surgical approach.” He said I could wait, but it is probable that I’ll still need this surgery. While some improvement is possible, in his experience I won’t see enough improvement to avoid it. (The longer I wait for this, the longer I wait for muscle surgery.) He feels comfortable moving forward at this time. So my questions are answered and I’ve decided to be comfortable with the decision to do it.

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