[snelsen]

#1018496

I WOULD LIKE TO HEAR YOUR EXPERIENCES AND OUTCOMES, ESPECIALLY RELATING TO DOUBLE VISION RESOLUTION.
SHIRLEY

[snelsen]

#1065252

maybe more familiar if I say "eye muscle surgery to correct double vision?"

[Kimberly]

#1065253

Shirley – I changed the title of your post, so hopefully, someone who has been through this will catch the change and respond.

Here are a couple of notes from the book that I have on Graves’ Orbitopathy:

1. Success rates increase slightly with multple surgeries. The authors recommend that not more than 2 muscles per eye be operated on at one time.

2. After surgery, the field of single vision will increase over time. However, lingering double vision issues may remain in gazing upward or to the side.

Hope this helps!

[snelsen]

#1065254

Thanks, Kimberly, that makes perfect sense!
I sure hope I am one of the ones who does have some success with looking directly forward. My inferior muscles are very fibrosed, causing me to resign from the job I love last year, ’cause I could not look up at the computers way above my head in the recovery room without hyperextending my head way back.
I hope I can get SOME upward vision, at least enough to look ahead when i am walking….

One doc says he will do the procedure under a local, the other says he would not think of doing it with anything but a general. I have cancelled the plan to do the local anesthesia, but I sure am eager to see if the eye muscle surgeries work for me. There is also disagreement on whether I am still in the inflammatory stage, or the fibrotic stage.
As much as I hate my vision issues, i want to err on the side of caution.

Another doc says that my biggest issue is the fact that I cannot close my left eye (after the OD.) He regards this as my biggest issue, and suggests that I consult @ eyelid surgery that will not conflict with the eye muscle surgery, and continue to do things out of order (had OD in inflammatory stage)

It is very challenging to protect my cornea, but I am doing a good job. Taping eye at night is VERY hard, and I wish I had some good suggestions for others who may have to do this. But I don’t. It is difficult!
Shirley

[Blessings]

#1065255

I recently had eye muscle surgery the latter part of June 2010 and am very pleased with the outcome. Single vision has been achieved. I had been using a prism in my glasses and no longer need to use it. Also, in response to your eye taping — which is something that I did for quite a while, I used Mepitac tape which was recommended by someone on this site. It doesn’t pull and hurt when you take it off. Since I’ve also had orbital decompression surgeries, I no longer need to tape my eyes. I wish you well in your journey. God bless!

[snelsen]

#1065256

Hi Blessings!
THANK YOU so much for your response! So glad Kimberly changed the title of my post. I feel really good about being "ready" for the eye muscle surgery. I was very apprehensive about having it too soon, but have begun to believe that I probably am in the cold, fibrosed-as-much-as-possible stage. The measurements have been consistent for about six months now.
I am very interested in the Medipac tape. Did you have to order it online, or could you find it in a large drug store? The prices were over $50 online, and I suspect that is much more than I need. Fromtwo your post, it sounded like you had an OD in the active phase to protect your optic nerve? So did I. But as a result of that surgery, I had a side effect of being unable to close my left eye, mostly a problem when I sleep. So that is why I have been looking for every help possible in taping it.
Two more questions for you. Were/are you very sensitive to light? Did it improve at all after any of your surgeries?
Did you have lot of tearing, watering of your eyes? Has that improved at all? Both are big problem for me. I am almost ready to resort to an umbrella, for the visors and floppy hats are not enough.
Thanks again, Shirley

[aopi96]

#1065257

I was diagnosed with hypothyroidism when I was 17 and have been on synthroid for 15 years. 2 years ago I noticed that one of my eyes started to bulge out while my lid drooped on my other eye. I went to a specialist who referred me to an Opthamologist/Facial plastic surgeon, who diagnosed me with GD. I had tissue removed from behind my right eye and several surgeries to tighten and stretch the muscle in my eyelid. All my lid surgeries were done with numbing drops, and in his office. This is a great solution for ETD. I definitely reccomend finding an opthomologist who is familiar with GD. My doctor also found that Botox injections in the eyelid will bring the lid down for a while, quick and painless. Hope this helps!

[Blessings]

#1065258

Hi Shirley,

Either of these two facilities ( 1) Mercy Surgical 800-637-2950 or (2) Edgepark Surgical 800-321-0591 is where you can purchase Mepitac. I purchased from Mercy Hospital at about $25.00 roll + shipping. I was not able to find it at any store. Mercy usually ships the tape the next day unless it’s a weekend. In response to light sensitivity after eye muscle surgery, the answer is yes. My eyes were sensitive to light and still is at times, but it is more tolerable as time progresses. The hospital where the surgery was performed gave me some really nice shades to wear which helps a lot. The watering/tearing is no longer a problem. Blessings.

[snelsen]

#1065259

Thanks, aoip 96! I am so glad you are on the other end of all this eye stuff, and that your results were so good.
Hi Blessings, I DID get the tape. It is expensive, but miraculous compared to the tape that was tearing the skin on my eyelid and cheek! Did you have eye sensitivity and tearing BEFORE your eye muscle surgery? I have a lot of it, hoping there is at least a fighting chance for improvement. Especially with the glare of the sun, it creates blind spots. I will have eyelid surgery after the eye muscle surgery. Did you have that, too?
How did you feel after your eye muscle surgery? I do have a call in to the office, no return call yet, but I would love to hear from you about your post op course. For instance, could you tell right away your double vision was less of a problem, or did it take a couple weeks? How did you FEEL after the surgery? I had an orbital decompression, and was able to walk a couple blocks the next day. How long did you feel it was essential to have someone to help you, or is it even an issue?
Or was your vision really blurred after the eyelid surgery so that you could not even see your computer? Thanks for reading all this, I thought if I gave some concrete answers, you could better answer my multitudinous questions!
Shirley

[Blessings]

#1065260

Hi. I’m glad you were able to get the tape. Yes, I did have eye sensitivity and tearing before the orbital decompression surgeries. I still have light sensitivity at time, but sunglasses are a big help. The eye muscle worked the same day. I was able to see singularly before I went home. I am now able to drive, which is something I hadn’t been able to do for a long time. There are some minimal instances of double vision usch as when I wake up or turn my head a certain way. Overall, my vision is single and I am extremely grateful to God for the restoration. I will be having the first eyelid retraction surgery in two days. I am able to read clearly, see highway signs, and I don’t have to be close up to the computer screen. I am very happy with the outcome and wish you the best.

Blessings

[sutan351]

#1065261

Thank-you Shirley and Blessings for all the good information on Eye Muscle Surgery. Shirley, I look forward to hearing your feedback after 9/22. I had OD on May 18th with ok results…but still have a good bit of double vision (unless I tilt my head upwards). I think it’s even a little worse after the OD, which was anticipated. I can see without double vision close up. My biggest fear in having the Eye Muscle Surgery is getting double vision close and needing prisims to read. After the OD, my next step was to have Eye Lid Retraction, but since my eyes are still uneven my Dr. is recommending the Eye Muscle Surgery for best results. And to address the double vision issue of course. After OD my eyes definitely settled more and the extreme pressure was off. Also had a lot of success with the swelling under my eyes. I still have light sensitivity and dryness at night – but believe this is my ‘new norm’. I REALLY wanted to move directly to the Eye Lid Retraction, because this is the most physical damaging issue to deal with. Although my eyes are less ‘Bug Eyed’ they still look weird with a lot of whites exposed above.

But, I’m trying to follow the recommended timeline of surgeries in this VERY slow course of a disease. I was first diagnosed in Fall 06 and didn’t have RAI until Fall 09 and OD in Spring of 10.

One question I did have for either of you or anyone else familiar with Eye Muscle Surgery is the actual surgery. I was told you are awake…as they need you to sit up and look out to measure progress during the surgery. This sounds dreadful and gives me the heebie jeebies in a big way. But I guess if I could survive OD, I can get through this one and 1 step closer to EyeLid Retraction Surgery. Any comments on how the actual surgery are appreciated.

I go to my Dr. next week to get more info…but I find it’s even better to talk with actual patients.

Thanks,
Sandy

[Ski]

#1065262

I haven’t done this surgery, but I understand that it is helpful to have a patient who can describe what they see, while they are doing these kinds of surgeries, so they like to have the patient conscious, but they give you that "forget-about-it" medication so you don’t remember it afterward.

[snelsen]

#1065263

HI Sandy, I just wrote a very long and very detailed post about strabismus issues, but it did not show up on the thread. I think it went about the same time as Ski’s. It took so long to write, that I am going to hope it shows up in a few minutes. If it is truly lost, I will write another one this evening. Need to take a break, get over the disappointment that it is not there.
Shirley

[snelsen]

#1065264

Well, I did it again. I wrote a whole post, and my log in time ran out, and I lost it. Not fair.

Hi Sandy, every time I write an extended email, and lose it, I worry that I will forget something in the next one.
You have put up with TED longer than I have. Very very difficult. Yes, I have light sensitivity and lots of tears, which blur my vision. I also have sun glare spots, even with sunglasses, so I have to use my hands to shade my eyes. I look like I am crying and saluting all the time! Kleenex and eye drops are my constant companions! I hate to think that this is my future. Hoping the eyelid surgery might help. I have a lot of white showing, eyes a little, not a lot bulgy. Certainly noticeable.

Anesthesia-I originally wanted to be awake, cause I talked to a guy in Chicago who had severe TED, and he had the awake eye muscle surgery on both eyes, and had immediate relief from all double vision. But this doc specializes in that.
When I talked to three surgeons in Seattle, two would reluctantly consent to do it, but only one eye at a time. which would prolong everything. And they much preferred that the patient be asleep, for any move during the surgery could be damaging.
The other doc said no, he would not do this surgery with patient awake, it hurt too much.
I then moved into your camp, deciding that it does sound, and probably is, dreadful, and gave me maximum heebie jeebie-ness.
So I will have a general, be asleep, have both eyes done.
I saw the eye measuring person this morning. She said my eyes were a little worse, crossing more! The doc will see the report tomorrow. Surgery scheduled next week 9/22! I hate to think that I am still in the hot or active phase. IT was the conclusion that I was in the cold, or inactive phase, and my eyes had finally stopped being attacked and changing! Don’t know it will concern him to cancel the surgery or not. Tune in tomorrow, I will write.

It really does make sense to have the order of OD, muscle surgery and eyelid retraction last. After the eyes have settled from the muscle surgery, they can make a much better decision about the eyelid surgery. Of course I want it all done yesterday,but the eyelid guy said that he wanted to wait as much as two months, preferably three months, after the muscle surgery, before he operated.
Of course, I am assuming and hoping that the FIRST SURGERY for the eye muscles will correct most of the double vision. He said I should be able to look up at least 70 degrees with no double vision, and that sideways double vision should improve some. BUT I know people who have had two or three strabismus surgeries until their double vision was finally corrected!
Sure hope it not you, not me. What a though!
I will write with update tomorrow. Sure hope this goes through with no problems!

[lakeview]

#1065265

Hello I had strab surgery in June 2010 – The surgery was under general anesthesia and was about 2 hours long. When I awoke, I felt very little pain in my eyes – more in my throat from the tubes for breathing!!.. I spent the morning waking up and then I was taken to the Dr. office where he adjusted the sutures still attached to one eye… slowly he worked with them until I could see well. Honestly, the idea sounds awful, but it didn’t bother me a bit… I was still slightly drugged up and they froze my eye for the process so it was no problem. Believe me the pain with this disease was worse than the surgery.
Afterward I used steroid eye drops for about a week- and was careful not to get dust in my eyes, no water or soap in my eyes and was careful not to lift anything heavy for about a month… I was overly careful! My eyes hurt for about a week but not that badly.
My Dr. explained to me that I would never have perfect vision again – essentially I see within a box, not good on the sides, upward or down. The results? Well, I do not see double reading or looking straight ahead< however< I still do looking up. I will return to my surgeon in october to see if I will have to wear small prisms or whether he will do an additional surgery. Hard to say. However, overall this has been a huge improvement and really it is a fairly minor surgery. My one eye used to look completely down – it no longer does. I still have white over my eyes but eventually I will get my eye lids fixed. I no longer have to tape my eyes as well,,, so that is big.
I am still very light sensitive – my Dr told me to lubricate my eyes often and this should reduce this problem. I can only hope it will eventually because it is difficult. I also get dizzy in shopping malls – too much stimulation for my eyes… I am hoping I will adjust over time.
I will know more in October … hopefully things will get better. Good luck with your surgery.
Lakeview

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