CatRAI2000November 18, 2018 at 4:55 pmPost count: 7
First, a bit of history – diagnosed with Grave’s in 2000, RAI 13.5 mill. TED which I essentially lived with (because it was my eyes) until 2016 when I had lid surgery to lessen the amount of exposed eye surface. Thrilled to have an option other than OD. It was enough on right eye, but not the left. After YEARS of research and consideration, I finally decided that OD in my left eye was the necessary “evil”. I used the same surgeon that did my succesful lid surgery, so I felt comfortable with his ability.
When I woke I experienced double vision – which in all his years of practice, had never happened to a patient of my surgeon or the ENT that assisted. Lucky me. He sent me to a muscle specialist and I’ve had CT scans and MRIs and he suggested time so the swelling could subside. The interesting thing is that the only thing my eye really can’t do is rotate fully to the left. It’s like it’s stuck, yet none of the scans show any obstruction or any other reason it should have an issue. It doesn’t seem to be a classic case of Strabismus and I’m beginning to think they don’t know how to fix me.
Thankfully, I can patch, I’m able to read and function fairly well, but I have trouble driving in bad weather and the dark. My activity is very limited because regular vision isn’t great and my self-esteem is suffering as well. I’m job hunting, so this is especially critical. It’s had an extremely negative impact in my life.
I’ve gone for a second opinion and that Dr. does consider it classic post-op strabismus. She also suggested I had it pre-op and somehow compensated and never noticed – I find that hard to accept – I’d have never had the surgery in that case.
After all of that background, I’m just wondering if there are any in-depth resources one can suggest about similar post OD complications, or anyone who has ever experienced a similar issue after – and if so, any guidance??
Thanks in advance!Liz1967November 18, 2018 at 6:50 pmPost count: 305
I had severe Graves ophthalmopathy and have had OD surgery both eyes, strabismus surgery and lids. Double vision is not at all uncommon with orbital decompression and most likely if done through the nose or by the inner corner. While going in through the outside corner (lateral) is least likely to result in double vision, I did have a huge worsening of the double vision I already had going into the surgery. This was due either to nerve damage or a hematoma and it did resolve to my presurgery degree of double vision.
Several things. First, TED can and does recur even years later. Without OD, you can end up with very little space in your orbits as the eye muscles swell and stiffen. Should it recur or worsen, you could end up with optic neuropathy which is potentially blinding. So do not regret your choice to have it done.
Strabismus is the inability of muscles to work together and in our case it is due to scarring and fibrosis of the muscles and compression of the muscles within the orbit due to swelling. They literally cannot move well and the OD helps with the space restriction which can damage the optic nerve and cause glaucoma. Once more space becomes available, the muscles tend to shift to fill the space, alleviating pressure but also malpositioning the eyes also causing diplopia.
If your issue is seelling from the surgery, then yes, it could improve. Double vision can be alleviated with press on (Fresnel) prisms on your glasses if you wear them or over nonprescription glasses. Once changing stops, prism can be ground into lenses. If it is bad enough, as it was in my case, strabismus surgery can be done by a pediatric ophthalmologist. There will always be difficulty looking to the sides and down so you learn to turn your head but straight ahead single vision can be achieved through prism or surgery. I you are only bothered driving at night or in bad weather, consider yourself lucky! I still have difficulty even in daylight on expressways sometimes. Due to the stiffness of the muscles, fatigue especially can make fusion difficult.
So should you require strabismus surgery, it is an easy surgery, they do it on kids all the time. My surgeon did the lateral approach because his patients were not happy with the double vision resulting from the nasal approaches, so it is not rare by any means but the OD surgery can be sight saving.
I was fortunate to see a oculoplastic surgeon known worldwide for his Graves expertise. If you live near a teaching hospital or an eye center like Kellogg in Michigan or Bascom Palmer in Florida or Emory in Atlanta,for example, go there. In the meantime, you might see an optometrist for a prism prescription.
TED is not an easy disease nor is it predictable. I had a total thyroidectomy, then intravenous steroids, orbital radiation, and after it burned out, ODs, strabismus surgery and lastly 3 lid repairs per eye. And I have had one recurrence fortunately easily treated with oral prednisone.
Patience is truly necessary with TED. Healing takes longer and nothing can be rushed. So wait to see if there is improvement first. Then find the most experienced opthalmologists you can even if it involves traveling. The most important is the oculoplastic surgeon. Do not second guess the OD. It is necessary for most of us with TED, either at initial occurrence or later. The strabismus is mostly fixable, even though the stiff, fibrosed muscle caused by attacking antibodies are not and they sometimes need to be repositioned on the eye.
I hope this makes sense. I have been through it all with TED and my husband is an ophthalmologist so I had a great source of info but even then it was a challenge.CatRAI2000November 23, 2018 at 6:59 amPost count: 7
Thank you for your detailed reply, I appreciate your time. I was under the impression that – solely based on my first Dr’s original assessment – what I’ve experienced post-op wasn’t textbook strabismus – that’s why I reached out here. I’m very aware that it IS a well known complication and yes, I went in knowing it was possible, but not probable. As I said earlier, in all of his years of practice – and that of the ENTs – I’m the only patient that it actually happened to. My surgeon was so alarmed he consulted the strabismus specialist before I even knew it wasn’t temporary – and it can be. The long and short of it is – no one is agreeing on what it is that I’m personally experiencing.
The second Dr. concluded strabismus by exam alone. She has the most recent MRIs to review, but still – now who do I trust? Speaking of, I live on the east coast, but I tried consulting with Dr. Douglas pre-op, I didn’t get a reply from his office at the time. I even follow him on Instagram. The surgeon I used did the prior lid surgery and we had many discussions about OD – so I went ahead. I will say that if it comes to having further lid surgery, I will be seeing Dr. Douglas! It was also through a strabismus specialist he works with and interviewed for his series on YT that I found my 2nd opinion – she recommended her.
Other than readers, I don’t wear glasses (cataract surgery, both eyes – thank God!!) and both Dr’s have concluded that prisms for my situation wouldn’t be a solution for what I’m experiencing. I’ve been wearing a patch inside sunglasses with built- in readers. I mostly use them in the car. Standard readers are fine for computer and iPhone use. Other than that, as you said, turning my head slightly works for all other times, but I always keep a patch nearby just in case. I also have difficulty in many situations (shopping – especially in grocery stores!) but I live alone so I’ve had to adapt as much as possible – I’ve even traveled alone.
I’m not afraid of the muscle surgery at all – I just wish that if I need it, it will be decided soon. Days after I had surgery, I lost my job to a workforce reduction (not to mention my mom right between surgery and that – horrible 2 weeks!!). I’m temping currently, but making 1/2 of what I used to. I can’t commute to higher paying positions with my eye as it is (and taking time away for all of the Dr. appt’s) – I worry about that too.
Sorry for the long reply – I felt you we’re kind enough to respond, I should reciprocate.Liz1967November 23, 2018 at 2:12 pmPost count: 305
As you probably know, Dr Douglas moved from Kellogg in MI to CA. I was lucky he finished all my surgeries before he left MI as I live in Cincinnati. Weird that prisms wont help. There is something with large stores that causes problems, not sure what it is but I cannot go into big box store without wearing prism and for some reason polarized sunglasses bother me too. I cannot move my left eye all the way to the outer corner or up at all but in the two years since muscle surgery, the right eye now moves all the way sideways but not up. Hopefully over the next six months, you will improve. I have found that moving my eyes in a figure eight seems to loosen up the stiffness a bit. Good luck!CatRAI2000November 29, 2018 at 6:49 pmPost count: 7
I do know that, but thank you! I like his forward thinking when it comes to TED so IMO, you’re fortunate to have had him as your Dr. It sounds like I may be consulting with him still – and sooner rather than later as it’s suggested that further surgery may require a tandem approach. If that’s the case, I want him to be my second opinion at the very least. Heck, he may even learn from my experience. Anyway, I spoke with the 2nd muscle specialist tonight. She reviewed my scans. I specifically asked – and she confirmed – that what I’m experiencing isn’t classic post-op strabismus. Whatever it is happened as a result of the OD. It’s not going to go away on it’s own, even though it has improved somewhat over the past 5 months. So, the waiting game continues while they determine next steps and a game plan. Like I’ve said I’m fine with that – to a point – because it’s my vision, but I also hope it comes soon because it’s been so limiting. Tonight I got caught out driving home from work after dark – it was pretty scary thinking that cars were coming at me that actually werent. I’ll update here when I have something new to add…
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