[snelsen]

#1062671

Hi sutan!
Holy Moly, I am sure sorry that you have had these experiences! I may not have mentioned that after my emergent OD, I was unable to completely close my left upper eyelid. (I did have an ENT and eye surgeon together for the OD>) Of course, the fact that it was ok before the surgery and not after the surgery, was relevant to me, but not to them. They said they could fix it later.

Re eye muscle surgery, or strbismus surgery. I have spoken with at least four people who have needed more than one of these procedures to "get it right." One of them had the same disappointing (and dismaying) results you had after her first one, DV was much worse. I was very prepped to expect that there might be additional strabismus surgeries to get it right. And, like everything else with this damn disease, you have to wait AT LEAST 2-3 months to know the final result. Really, you cqn’t rely on much regarding results just a few weeks after the surgery.

Since I just had my eyelid surgery, I can’t comment on the outcome yet. When you look at me, eyes are NOT symmetrical, and I have given up on that, I think. Same deal, when muscles are cut and changed, it takes at least 2 months to know result, have all healing occur and swelling completely disappear. After my eyes are totally settled down, I do plan to get prisms in one eye to help with the DV. It is the doctor who did the strabismus surgery who will prescribe the prisms. THeir techs are great, take an hour with me each time.

Generally, all docs avoid the driving discussion. It’s like the elephant in the room. When everything was at its’ worst for me, and I had no idea that my vision was decreased because of pressure on my optic nerve, I DID have an accident, and it was my fault. It will be on my driving record for 5 years! I was devastated.
I am driving now, on surface roads and in the daytime. I don’t drive at night when it is dark and wet (Seattle.)
Probably the biggest hindrance to driving now is the SUN! I am super photophobic, and wear sunglasses, sometimes two pair, and athe biggest visor hat I can find, to block the glare. When I walk down the street it looks like I am saluting all the time, for I am using my hand to block the glare.

Sorry this ls so long. Want to send it before it gets rejected!
Shirley

[sutan351]

#1018095

So Glad this topic hit the boards right as I was ready to post my frustrations/questions…..I’ll get to the driving issues….

FindingMe hit it right on with the conflicting advise I have received for years. I finally found a surgeon at one of the best facilities in the country that gave us hope years back. (This after going to 3 different surgeons locally – all with different opinions. Some said NOT to do OD or Eye Muscle Surgery). This surgeon suggested to "treat my thyroid" (finally had RAI in Apr of 2009) and then consider OD before determining if Muscle Surgery was necessary.

Had bi lateral OD in May of 2010 and developed complications which included 2 additional surgeries. I started to develop bumps under my R. Eye that would come and go after the OD. Finally discovered, I had Maxillary Sinusitis that caused an abscess under my eye that had to be removed and then needed Sinus Surgery (before this surgeon would do Muscle Surgery)…My Advice to anyone getting OD – Press your Dr. to have an ENT Present (if possible). This Surgeon completely missed the fact that 2 rounds of antibiotics didn’t help clear my sinus issues. Which likely caused the infection and the abscess.

Anyway….after the OD – my Double Vision got worse and the alignment of my eyes were even more off. Because now my R. Lid was even lower (because of the surprise abscess removal surgery). It was agreed that I needed Eye Muscle Surgery to correct this alignment and my DV. Otherwise doing lid surgery on misaligned eyes would look even more weird!

Unlike Shirley (So glad you had success)…..I have Even WORSE Double Vision and up close DV – which was my biggest fear. I finally started to drive the back roads – after TWO Weeks. And have ventured out a little more this week. Before the surgery I could tilt my head up and see single, but that spot is now gone. Feel like I look a little sideways and need to blink and stare to get any Single. It’s a CONSTANT thing and now starting to give me neck pain from the constant head maneuvering!

Hopefully, my eyes are still correcting – but feel like a REALLY need a 2nd eye muscle surgery…and all this to get to the Eye Lid Surgery, which I desperately want for the cosmetic reasons. Post Op (1 week after) – this surgeon felt "the surgery was a success and my eyes were aligned"….BUT I am still seeing DV and close-up DV….what a nightmare!

So tired of it all and tired of my family/friends asking how things are going! Blah Blah Blah…I feel better than two weeks ago, but dealing with VERY Stressed eyeballs. I’m lubricating (often) and trying to remain optimistic. Gratefully – I’m not working. Would not have been able to work – Because I CAN"T SAFELY DRIVE or look at a computer/read for long.

Drs. DO totally avoid this issue and make it seem like no big deal to cover one eye. And if you do cover one eye…you can’t uncover while driving or you will experience the blurriness and enhanced DV that you experienced on the Hwy.

I’m 3 weeks post Eye Muscle Surgery this Thursday – Really need to start driving (very fearful of this)…I go to a local Optometrist on Friday for an exam and may get measurements for prisms. Feeling like I’ve taken 2 Giant Steps back on this very long journey!!! More fatigue and overall diminished health from Fall 2006 when I was dx – with Graves/TED

Sorry for the RANT – my husband has been patient…but many of you on this site can relate much better!

2 Questions – Has Vision Therapy or Eye Exercises worked for anyone. My Neuro- Opthamologist of course dismissed this!
What about acupuncture?

Ugh…..starting these surgeries can be a ‘slippery slope’ as I’ve experienced. But hope to get to the top of the slope soon!

Sandy

[sutan351]

#1062672

Thanks for the feedback Shirley – I appreciate your input and it always gives me encouragement to keep asking the tough questions. I did get a script for prisms in my glasses (at least temporary) this week – haven’t picked them up yet….but hopefully they’ll help with my driving issue for now. I will definitely be sticking to daytime driving as well!

Do you remember the name of who had eye muscle surgery results similar to mine. I would love to talk to someone that had to have a second surgery. This road has been long and although I was mostly happy with the Orbital Decompression..the resulting sinus issues and worse Double Vision or exactly what one surgeon warned early on could happen.

Now I’m pretty much stuck staring over in my local area trying to find another surgeon. I’ve gone through a few locally with terrible bedside manner etc. I’m also looking into Vision Therapy and possibly acupuncture.

How are the results from your Eye Lid Surgery?

Sandy

[Jake_George]

#1062673

I believe they were referring to me. I have had the orbital decompressions. I needed three follow on strabismus surgeries to clear out the double vision as much as possible. I do have permanent double vision but ground in prisms have that covered.

I did not drive with double vision without an eye patch. Using one eye fixed the double vision issue and took due responsibility on my part to look closer when I drove.

Yes I did eye muscle exercises with great success and I learned a new hobby at the same time. My eye doctor started having me do yarn and plastic canvas stitching to help my eyes focus. I started with 7 holes per inch, went to 14 holes per inch and then went on to counted cross stitch on 24 count French linen.

Now I do Native Bead work and porcupine quill work and my eyes are fine for it.

It all takes time. I know we type A’s hate to hear that but patience is a virtue.

I do not check in as often as I used to when I started this bulletin board almost 12 years ago… But I can truly say I have Graves’ and life is good.

[Author]

Posts