[bondgirl]

#1059489

My History:
Dx’d Graves in 1997
In 2010 summer I had a graves flare, and it was treated but weaned too quickly from Methamazole. I developed TED around March 2011, and my right eye protrudes 5mm more than my left, which also protrudes but not as badly.

So this next Wed. I am set to have decompression surgery on that R-eye only.

Here’s my questions:
I have double vision, has anyone gotten improvement from the decompression surgery?
Does anyone think I should wait on surgery? I am in the “cold” phase, unchanged for 8 months. However, part of me wonders what if surgery “stirs up” the illness, or make me flare? My Trab is about 140 (with 80 being normal) I am considered moderate Trab. TSH, T4 all very normal for some time now.

Also, in another year or so, what if my condition slowly improves. Should I wait and see?

I’ve never been under with anesthesia and I’m a little concerned naturally. Not to mention scarring and healing. I have an autoimmune liver disease as well, and live on cyclosporine, an immunosuppresant.

Thank you for any suggestions!

[gatorgirly]

#1175067

I had bilateral OD 6 1/2 weeks ago, and I am so glad I did. I didn’t have any double before or after the surgery, so I can’t really speak to that. Double vision requires eye muscle surgery, and I’m almost certain they won’t do that during or even any time close to your OD as that would be a lot of trauma to your eye all at once. My surgeon told me if I developed double vision as a result of OD (50/50 chance), I would have to wait three months before the strabismus surgery to allow my eyes to heal and the swelling to subside.

I was in the cold phase for eight months when I met the surgeon, but he made me wait until I reached a full year before operating. I think surgeons like to wait even longer, but since I was only in a hot phase for about a month, he made an exception for me.

As for scarring, mine was done endonasally – so an ENT surgeon went up either nostril to remove the medial walls (bones between your eyes and nose). My oculofacial surgeon went through my lower lids to remove the orbital floors (the bone under your eyes), and went through my upper lids to remove orbital fat from behind my eyes. The only incisions were in my upper lids along the crease lines, so no one can see them except me now when I put my makeup on in the morning. Some people have their lateral walls (bones on outside of eyes near temples) removed, and that requires a small incision, but my surgeon told me he does that right where most people already have small crow’s feet wrinkles. I’m 28, so I don’t have wrinkles yet, but even so, they would’ve been hardly noticeable after a few weeks. He ended up not removing the lateral walls because the rest of the bone and fat he removed created enough space for my eyes to fall back to where they are supposed to be.

Since you’re only having one eye done, your recovery will be a lot easier. I was basically blind for a few days and had very limited eyesight due to soreness and eye fatigue that persisted for almost a month. I took two full weeks off from work and then worked half-days for another two weeks. I’ve been back to full time for a month now and feel great. I would highly recommend reading my posts about the recovery. Shirley (snelsen) had OD as well as posted about it. Make sure you have a caregiver for the first 24-48 hours, and a driver for a week or two depending on how you feel. Get gel packs ahead of time. The hospital gave me a nice little thing that had a slot for ice packs but it wrapped around my head and velcroed in the back. It was so much easier than trying to balance a bag of peas on my head, especially since I was supposed to remain mostly upright when I slept (and sleep was all I did for the first week). Get some extra pillows, put a few under the head of your mattress and then plan to use a lot under your head and on your sides to keep yourself upright as well.

I was worried about the anesthesia as well and I did get a little sick but that’s probably because I had to start fasting at midnight but my surgery wasn’t until 1 p.m. and it took a few hours longer than the surgeons expected, so it had been about 20 hours by the time I got home. I was too exhausted to be hungry or thirsty and that’s probably why I got sick that first night. My appetite was back in full force in about three days. I got Percocet for the first week and then switched to OTC naproxen. The pain was significant but manageable. I think Shirley is the one who said she never needed a pain pill after her OD. We’re all different, and it’s good to make sure you get the prescription just in case, even if you never need it.

I can PM you a link to my personal blog, where I documented the whole process, including photos.

[snelsen]

#1175068

Gatorgirly did a great job of covering a lot of points.
Regarding OD helping double vision, no, it will not. Basically an OD is
“making more room” for your protruding eye, but removing some fat and bone.
But double vision is caused by the fibrosis (hardening, fattening, making larger) of our six eye muscles. The muscles do not expand and contract like they should. The reason that double vision is listed as a possible side effect of OD, is that those muscles an possibly get manipulated during an OD, and/or that the are more swollen and inflamed as a result of the procedure.
I had double vision when I had my OD, in the active phase, which is not recommend, but I had it because there was too much pressure on the optic nerve.

In your case, as gatorgirly mentioned, strabismus surgery corrects double vision. And it needs to be done after an OD, ideally.

Regarding your labs, check with your docs, but the labs you mentioned, or any other labs, for that matter, have nothing to do with surgical decisions for TED>
They are made based on symptoms (proptosis, double vision, retracted upper and lower eyelids) and the surgeries are done to correct these symptoms.
The important message is to do the procedures in the cold, or inactive phase, cause your eyes are not changing anymore. The docs can’t do these procedures sooner, for the measurements would not be accurate, in other words, they have to have measurements that are consistent and not changing.

Regarding your thoughts about waiting, you also should ask your docs this, but lots of people wait quite a while before they decide to, or not to have an OD. Nothing wrong with waiting.but you need to treat the symptoms of dry eyes with preservative fre drops and ointment. Corneas do NOT like to be dry. And our tear consistency changes to much less efficient, too. I think this is a life long problem. And, as we age, eyes get drier.

Regarding scarring and healing, and anesthesia, it is normal to feel a bit apprehensive about anesthesia, and every person who has it, for any reason, usually feels the same way, like any other experience similar to that. Anesthesia is pretty state-of-the-art now, with many improvements. I think you will probably find it a non-issue after the fact.
For me, and for most others, the incision is barely visible after it heals, and like anything else (getting “stitches” when we cut our selves peeling potatoes) it simply heals in 10 days to 2 weeks.
Hope this is helpful along with the other responses. And take these questions to your docs, as well.
Shirley

[chernew]

#1175069

I had decompression surgery almost 2 years ago due to double vision issues. I could no longer drive, watch television or read and wore prism glasses for correction. I did each eye separately, about 3 months apart, and then 6 months later had strabismus surgery. That surgery levels the eyes and eye muscles and further relieves the double vision. I had eyelid surgery following that. I am still not finished as the eyelid surgery has failed 3 times. I have now been told that one of the eyes is in hot phase again, and I may have to do it all over in that eye. My initial cold phase was 12 months. I think that just illustrates that everyone is different, and each person’s treatment and recovery will be unique to them.

It can be a long process, and I was initially scared, but I didn’t feel any of it was too painful. As a matter of fact, I never took pain meds other than aspirins except the first day of the decompressions. In addition, because of the repeated eyelid surgery failures, we did the last one with me sitting up in a chair and only a local anesthesia shot. Surprisingly, it didn’t bother me at all. At any rate, when coupled with the strabismus, it did indeed help my double vision. I got sick on the anesthesia and told my doctor, so the next surgeries they put anti-nausea meds in my IV, and it worked perfectly.

I bruise and swell horribly, so with my doctor’s recommendation and my own research, I took Arnica Montana tablets for a few days before surgery. It does help with swelling and bruising. It did take me several months for the bruising to dissipate each time, but, as I said, I bruise quite easily.

[PattiMeg]

#1175070

To gatorgirly, bondgirl and Shirley,
I have been following your OD discussion since I will more then likely be needing one at some point. Diagnosed with Graves in 2/11, had RAI then developed Ted in fall of 2011. Started with lid swelling (upper and lower) along with terrible dryness and redness. Had bilateral blepharoplasty in April of this year and thought my TED party was over. Oh how wrong I was. I now have lower lid retraction as a result of the lid surgery and my eyes don’t close properly. I have alot of swelling in both eyes, double vision, high intraocular pressure on upward gaze and awful pain and stiffness, along with sensitivity to light. Just started an oral steroid regimen to see if the swelling comes down (it has helped a little) and an MRI on Tuesday of the orbits to see what the muscles look like. I have tried to stay positive (just started a new job and am so stressed out) but when the doc said the words orbital decompression my heart just sunk – those were the 2 words I never wanted to hear. I guess I need some moral support from my TED sisters to help me be positive and not too frightened of what may be ahead. Gatorgirly you said the OD was the best thing you did. That was very comforting to hear. I can’t tell you how much it means to know others out there are struggling with this awful disease and understand what it’s like.
Patti

[Author]

Posts