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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 07/06/2014 :  08:28:41 AM  Send JudyK an AOL message  Reply  Reply with Quote
Another weird diagnosis. This makes three so far this year for me. I just went in for my eye exam Thursday. The assistant did some testing, asked a bunch of questions which I answered, but I also added why bother when Ive made the same complaints and the surgeon didnt even acknowledge, or address them. By the time the surgeon came in to the room, she was prepared this time. She did further testing, and then had some pictures taken of the cornea, only to find it is thinning. She didnt have a solution and wanted to research it before recommending anything. Ive looked online about this and in some cases they place some kind of gas filled contact lense on the eye. Has anyone else experienced this? Im curious what was done in your case, and if it helped solve your problem vision.

JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 07/19/2014 :  4:21:47 PM  Send JudyK an AOL message  Reply  Reply with Quote
My Opthamologist finally called and had me go to a Cornea specialist. Ive been going through lots of testing this past couple of days, and this next week I have mapping scans done by another specialist. Then in August will go to another specialist for some type of temporary contact lense fitting or insertion, which one I dont know.. The Cornea specialist told me to not jump the gun YET, whatever that means. Possibly he is reacting to my doing online research about the problem. Ive got this double vision thing going on when I read, that has only gotten worse since the cataract, and strabismus surgeries. Both lines look identical other than the real word doesnt have the darker shade background. Plus, my peripheral vision is messed up also. They also found early signs of macular degeneration. At least, now I know this much.
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Jnanne
Star Contributor

LA
USA
3043 Posts

Posted - 07/20/2014 :  12:33:34 PM  Reply  Reply with Quote
Judy--amazing the number of people who have read this thread and none of us have any news to share! Looks like you are the first on the forum to experience this. I hope it turns out well.

Jnanne
Silver certified
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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 07/23/2014 :  11:48:57 AM  Send JudyK an AOL message  Reply  Reply with Quote
Ive learned one thing. Its the squeaky wheel that gets the grease. If others have noticed their vision changing and during the pre-exam at the eye Dr, and the Dr doesnt acknowledge them, make yourself heard! This mess I find myself in, can cause blindness if not addressed. Yet, my Ophthalmology surgeon couldnt figure out what was causing it.Time to switch back to my regular Opthamologist,and a different surgeon!
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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 07/26/2014 :  12:28:26 PM  Send JudyK an AOL message  Reply  Reply with Quote
I had the Wave Scan on Thursday. This test is supposedly more accurate than anything our Ophthalmologists have to diagnose corrections for Astigmatism issues.None of the various lenses they tried for correction during my eye exam helped. Im farsighted, and it only got worse AFTER my cataract surgery as this was the last surgery performed, and I was told would be be the cause of the problems. The mapping finds every defect in the cornea size, and shape along with other surface defects. Anyway, hopefully theyll be able to correct the way light passes through the cornea so the double vision will stop being a problem, along with my peripheral vision. Surgery to remove some of the cornea to reshape it is one option, lasik surgery,soft or hard contacts or glasses are the options theyll look at for the best correction. I found it unbelievable they can perform lasik surgery even though Ive had cataract surgery. I wont know which option theyll recommend until I go see the other specialist August 18th. Here I thought my vision problems would end after having Strabismus and cataract surgery.
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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 08/18/2014 :  2:15:07 PM  Send JudyK an AOL message  Reply  Reply with Quote
A battery of testing today, and more pictures lasting 3 hours. Dr tried and succeeded in getting rid of the double vision experimenting with 3 different hard contact lenses, but with blurred vision. This specialist determined that it is a corneal problem, and will meet with the Cornea specialist with his findings, then an appointment will be set to see Cornea specialist again to see what he recommends. It wont be corrective lenses in glasses thats for sure, as they dont have this prescription available. Ive always had astigmatism, but after the cataract surgery it got worse. If you have double vision that seems to have worsened after the surgery, get your eyes checked, and be sure to let them know about the problem, and how long youve had it. It can happen to those that had cataract surgery, but the Dr didnt know why. Theres been other changes also to the vision they found in one test that I refer to as the horizon test. Before I wasnt seeing above the horizon, now I am not seeing the lower section.Whatever that means. This test consisted of clicking a button every time Id see a blinking light while looking straight ahead in a bubble machine.
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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 09/23/2014 :  4:23:32 PM  Send JudyK an AOL message  Reply  Reply with Quote
Its been 6 weeks since my last appointment and I havent heard a thing. I called the clinic 3 weeks ago,and again last week, with promises to tell the Drs Assistant,and check with the Dr,then theyd call me later in the day. No calls. I didnt know it would take this long for a Dr to figure out what to do to remedy the situation. I am tempted to call another cornea specialist for a second opinion if I dont hear something by next week.
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Jnanne
Star Contributor

LA
USA
3043 Posts

Posted - 09/28/2014 :  5:31:48 PM  Reply  Reply with Quote
Going for a second opinion is rarely a bad idea. I can understand the frustration of not getting answers--or even calls back saying the doc is still consulting and researching and has yet to make a recommendation about the best treatment.

Good luck. Sometimes it takes a lot of effort on the part of the patient to get proper treatment.

Jnanne
Silver certified
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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 09/29/2014 :  05:30:39 AM  Send JudyK an AOL message  Reply  Reply with Quote
Thank you Jnanne. My daughter advised me to call one more time,which I did Friday. After explaining to the receptionist the problem, she said she would contact the Drs assistant "right now". He told her they have my file and are just trying to find a time to work me in. Now, why the heck was that so hard to not tell me in prior calls? It would have alleviated much of the concern I had they were blackballing me.
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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 10/14/2014 :  09:34:13 AM  Send JudyK an AOL message  Reply  Reply with Quote
Another two weeks have passed, and still not a word from clinic. Im thinking its time to request a copy of my medical records and go elsewhere. It seems suspicious to me they arent making any effort to get me in for treatment.
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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 10/30/2014 :  1:30:55 PM  Send JudyK an AOL message  Reply  Reply with Quote
I received my medical records dating back to my first visit with the surgeon, as anything prior wouldnt be relevant to the newest problems. Each of us visiting our doctors, is assessed for different factors of our mental status at the time of the visit. Of the I believe, 18-20+ times my evaluations were normal and oriented. One time, I was reported as very disoriented the morning after one cataract surgery, another I was described as "stubborn", which was no surprise to me, as Ive been told this numerous times. My first specialist (cornea specialist) had positive remarks, but, when I visited the last one he put a comment of "borderline silla", which was returned to the cornea specialist. Not knowing what that meant, and believing it to be related to my eyes, I did a search. Borderline silla is a Personality disorder that describes a patient as being suicidal, abusive to alcohol, afraid to be alone, having a temper, abuses the use of the ER, amongst a myriad of other stuff, all of which does NOT describe me! I never raised my voice when I explained to the Dr I was disappointed in my surgeon for not addressing my problems, nor doing any testing to find out what may have caused it. For that, I get a label of being "borderline silla". I might add, that in the description of this mental disorder,that many,if not most physicians will refuse to treat a patient when having this disorder! Now, Im caught between a rock and a hard place if I go to a different Ophthalmologist specializing in corneal problems, and he/she reads that Im mentally unstable. All Ive ever cared about is getting my eyes fixed, and was ignored pretty much.I have been diagnosed as having monocular diplopia, which is double vision,and cornea problems that cannot be addressed using corrective eye glasses, or hard contact lenses, and possibly even with the specialized advanced lasik surgery. The double vision, came into being shortly after I had the eye brow surgery, and possibly the brow is touching the cornea when I blink, causing the cornea to mis-shape,or wear away. When I received the records, I emailed copies to my daughter out of state who is a Radiation Oncologist to
go over them. She called me and was madder that H that a Dr would put such a remark on paper about a patient hed only had contact with once.She too, felt as I that they are hiding something, or dont want to get involved because the surgeon, and two of the specialists Ive seen, all work together in the same clinic office together. Since she has all the information from these records, she is going to call the clinic, or write to the Dr letting him know I am not crazy, and dont have any of the signs of the silla disorder.
She advised me to see a good attorney because she believes they are hiding something the surgeon did wrong in th eye brow surgery. Im holding off, as I just want my eyes fixed, thats all Ive ever wanted! MAYBE this can be taken care of amicably, as I have no interest in suing anyone. Now its just wait and see what the clinic will do.
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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 10/31/2014 :  09:47:31 AM  Send JudyK an AOL message  Reply  Reply with Quote
Good news this morning. My daughter had given my medical records to another Doctor and he THINKS he may have spotted the problem. Back several months when I had the eye brow surgery there is the possibility that the brow was drawn up too much and the pressure causes the lid to rub against the eye (cornea) each time I blink. He advises I see a different cornea specialist. Also, the definition of silla disorder I found online, is wrong. It doesnt pertain to the used definitions by Ophthalmologists.He says it means there are dual factors causing the problem. One, the shape of my eyeball, instead of being shaped like a baseball, its shaped like a football. 2nd, the eyebrow is now having a negative effect since the shape is wrong and is causing the lid to rub causing the double vision.Im to point out this to the new specialist when he reviews the records. This is a great relief! An over reaction on my part thankfully.
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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 01/23/2015 :  12:03:24 PM  Send JudyK an AOL message  Reply  Reply with Quote
Its been a wait, but today I had my appointment with a different Cornea specialist at Mayo Clinic. I did NOT take my medical records with as I didnt want his/her diagnosis swayed, although, I did furnish him with information he asked for, and things Id been told by the other Drs., along with surgery dates. I had four different testings done this AM, and go back again on Monday to have hard contact lenses fit to reshape the cornea, then back to the cornea specialist again on Tuesday. This specialist is attributing the problems Ive experienced to the Strabismus surgery(eye muscle surgery to straighten eyes) I had done 09/2011. Shall wait and see what happens next.
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Jnanne
Star Contributor

LA
USA
3043 Posts

Posted - 01/23/2015 :  4:17:01 PM  Reply  Reply with Quote
I hope the hard lenses help. When I first started wearing contacts as a teen in the 70's, I was not suitable for soft lenses and I discovered that the hard lenses had a big impact on the shape of my eyes. I could wear the contacts for a couple of days, then have 20/20 vision for a couple of days before I had to wear them again. When I switched to gas permeable I could wear them for a week, then go without for a day or two, but needed to wear them for a week again before they had adjusted the eye enough to let me see distance well enough to go without.

From there I went to disposables, which make no difference whatsoever in the shape of my eye, no matter how long I wear them--but they certainly are more comfortable and easier to keep in good shape! Just toss them after a couple of weeks and open a new package!

Judy, I hope this Mayo Clinic doc turns out to be wonderful for you!!

Jnanne
Silver certified
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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 01/24/2015 :  05:02:21 AM  Send JudyK an AOL message  Reply  Reply with Quote
I am dreading wearing contacts! Like you, I also found contacts uncomfortable when I purchased them in the 70's. They were nothing but a pain in the butt. Totally uncomfortable, scratchy, and made my eyes water.
When I go for the appointment today, I am definitely taking my medical records with, as I dont think the specialist is seeing the whole picture, and the records should shed some light where further testing was done to come to their conclusion. It makes me uncomfortable that one specialist diagnoses my problem as thinning of the cornea, and this specialist says its cause is the eye surgery, with no mention of the cornea thinning. My appointment is at 1 PM so we shall see what goes on today.
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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 01/26/2015 :  1:25:39 PM  Send JudyK an AOL message  Reply  Reply with Quote
Not a lot learned today, other than now Im set to see a Retina Specialist on Feb 4.Im told to be ready for 4 hours of testing! After that, an appointment will be set to go back to the Cornea Specialist and a discussion of what the best options are for correction. I did learn that the Toric cataract lenses I have are also known to cause double vision, and if those are the problem theyll have to be removed, and either a different brand used, or no replacement and the vision will be corrected with glasses. UGH! If thats the case, I sure hope the lenses arent thick as coke bottles! I remember a friend who wore contacts during the day, and removed them at night to wear THICK, bug eye popping lenses.
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Jnanne
Star Contributor

LA
USA
3043 Posts

Posted - 01/28/2015 :  06:54:16 AM  Reply  Reply with Quote
I knew a man at the UofI who used a contraption attached to his glasses that actually was based on a microscope. Without it he couldn't read and would have had a much more difficult time with his studies. I don't recall his field of study, but I believe he was a graduate student. Anyway, he had an excellent way of looking at life--and decided that he wanted to be a Borg for Halloween, since he already had the eyepiece.

Take whatever life gives you and make the best of it? Want to borrow my daughter's Kafka cockroach costume next Halloween?

Jnanne
Silver certified
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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 01/29/2015 :  08:52:30 AM  Send JudyK an AOL message  Reply  Reply with Quote
I have made up my mind that IF they recommend removing the Toric lense, without replacing it with another, Im not going to have the procedure done. Id rather put up with double vision than be made fun of wearing thick lenses. I lived the majority of my life being ridiculed, and laughed at because of my eyes. I am not going to finish out my life the same way! The cornea specialist also mentioned the Toric lenses are known to cause double vision, so if anyone else is experiencing vision problems using Toric lenses, get it checked out.
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Jnanne
Star Contributor

LA
USA
3043 Posts

Posted - 01/29/2015 :  10:51:22 AM  Reply  Reply with Quote
I'm sorry, Judy, if I offended. I wasn't making fun of you, or anyone else with glasses--Lord knows I have enough faults for folk to pick at if they choose.

I would encourage you to think a lot about what other side-effects may accompany double vision, such as blinding headaches. Discuss this in depth with your doctor before coming to a firm decision. You may be able to use contacts for a set number of hours during the day, then resort to glasses in the evening at home, when your eyes can take a break and you can kick back and relax and not care what anyone sees, because the only folk who see you at home are the people who love you no matter what, anyway.

Jnanne
Silver certified
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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 01/30/2015 :  12:08:56 PM  Send JudyK an AOL message  Reply  Reply with Quote
Jnanne, by no means did you offend me. To be sure, I will be asking a ton of questions before anything is done. Im kind of tired of hearing this is to blame, or that, or your surgeon botched up the surgery. BEFORE anything gets done I want to see the facts, and want to know who to believe.
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JudyK
Star Contributor

Eau Claire, WI. 54703-1729
USA
1349 Posts

Posted - 02/10/2015 :  11:28:14 AM  Send JudyK an AOL message  Reply  Reply with Quote
Thankfully, the appointment with the Retina specialist lasted only 2 hours, and I still know little, other than I now go in this friday for a retinal dye test. I think hes ruling out macular degeneration, although he did show me theres only small amounts of calcium built up, or the health (wants to make sure there isnt any blood where it shouldnt be) in back of the eye as a possible cause. Once this procedure is done THEN I get an appointment to again meet with the Cornea specialist who will finally tell me whats going on, and the best approach to be taken. I should have gone to Mayo in the first place, as they sure are thorough.
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