There is a list of things to think about as you prepare for ODS…they are things I wish I’d been warned about
**I wish I had discussed in detail with my doctor during the pre-op appointment about what kind of pain medication I would be on, and the appropriate dosage. In a perfect world, I would’ve had that prescription filled BEFORE the operation, but the Casey Eye Institute doesn’t allow narcotics to be dispensed until AFTER the surgery, because they’ve had problems with people canceling surgeries and keeping the drugs. In my case, the underling doctor under my surgeon prescribed a dose that was ridiculously low, and I suffered through the first day and night because of it. Drugs are your friend for the first 48-72 hours…..don’t even TRY to be brave about it.
**With my second surgery a week later, I wish my doctor had told me that there was a chance that the would choose NOT to remove the stitches from the operated eye. This would’ve given me a chance to make some rudimentary adjustments to my home to make it more friendly to the vision impaired. It wasn’t the end of the world, because my mom moved in for the month and really helped out, but a little forewarning is better than a last minute surprise, IMHO.
**I wish I’d realized for just how TIRED I would feel for the first 6 weeks. My doctor did tell me this, but I just didn’t believe him. I historically bounce back from major surgeries: I insisted on walking around the hospital ward just hours after a both c-sections (much to the nurse’s surprise) and I was at a neighborhood BBQ just 48 hours after my hysterectomy. The ODS was different. We’re talking about napping all day and sleeping all night. I never made it by the pool with the kids, and I barely made it into the dining room for meals. One of my favorite memories is my friend Jan visiting me and crawling into bed with me! I am just now feeling like I can go the day without a nap, and hope to resume aerobic exercise this weekend.
**I wish I’d thought the timing of the surgery through….I should’ve put it off until the fall/winter, when Oregon is overcast and cold, instead of during August, Oregon’s sunniest and hottest month. We have windows that face the west, so even with the air conditioning on, the bright sun in my bedroom became unbearable. We did the ultimate white trash thing and taped up tin foil on the windows….it was real perty. I missed out on some of the last fun days of summer with my kids, and my son’s last few weeks at home. I’ll never get that back. But, I DID dodge the back to school shopping bullet, as my mom stepped in and spoiled her grandkids.
**I wish I’d known that they were going to put me on 2 courses of Prednisone. I know there isn’t much I could’ve done about it, but knowing ahead of time would’ve prepared my poor husband for the evil that was about to ensue.
** I wish my doctor had given me a realistic idea of just how much facial numbness could result from surgery. Eating a sandwich is tricky, as my upper lip doesn’t want to lift, and drinking red wine in public is out of the question, because I end up with what looks like a kool-aid stain!
THINGS TO DO BEFORE YOUR ODS:
*If you have kids, make arrangements to have someone care for them (and you) for at least the first 72 hours. You will be tired and drugged and you need only focus on healing yourself. If my mom hadn’t come down, I don’t know how I’d handle it.
*Make sure that your household is prepared for at least 2 weeks without you. Pay your bills, cancel appointments, and make sure your house is uncluttered and ready for you to stumble around with limited vision.
*Realize that you won’t be driving any time soon. I’m lucky enough to live in a city with grocery stores that deliver. I took advantage of that service, and the one that brings any local restaurant’s menu to your door. Let neighbors pick up groceries at the store (if they offer, lol) and just be prepared to be a little helpless for awhile.
*Don’t expect miracles from the surgery. I’m still working on this one. I’m disappointed that, although my eyes look better and are not nearly as protruded as they were, my eyes are not as symmetrical as they used to be. I used to have symmetry to my face, even with my eyes bulging out. Now my left lower eyelid seems less tight than my right, which makes the whole eye seem larger. But, I have to keep reminding myself that it’s better than it was…it’s just not the way I looked pre-Grave’s disease.