Perhaps you know that I have had a lot of eye-issues from my right eye. Saw double, lost the vision on my right eye for some minutes etc, Due to TIAs. This was in 2002 and some years later. I am now 73 so I have the age to do it for sure.
I have the last years seen an Oftamologist who at the last appointment said I should operate a Cataract. Today I saw the Doctor who should operate and he agreed with the other Doctor that i should operate. I see only 60 % without glasses on my right eye but I think I see quite ok with my glasses.
I believe of course that my bad seeing is caused by HS/APS and all the neurological symptoms I had before I at last started Warfarin. I know the operation is easy but with our antibodies etc I do not want to do it if not necessary if there should be any complications.
Any thoughts from you please?
Kerstin in Stockholm
Written by
Lure2
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You must be advised by your ophthalmologist. I can understand your anxiety but s/he will have the necessary experience to give you the reassurance you need.
You need to feel you are in control of what is happening and age has nothing to do with this feeling! If you don't trust your doctor, don't do it. If you do, then your eyesight will be improved.
My mother had a stroke in one of her eyes but causes her blurred vision. It's better if she closes the bad eye. If you have the chance of better vision, this is an opportunity for you - but only if you trust the doctor. The ultimate decision must be for you to take.
My understanding is that cataracts are easy for an opthomologist to see. I have what my ophthalmologist calls "baby cataracts" and my only issue is having trouble driving at night in the rain ( glare, Glare, GLARE!) I know that as my lenses become cloudier and cloudier I will someday have to have the surgery. My great grandfather had cataracts before he died ( at age 101) and he couldn't read and could not even tell me apart from my sisters or my mother or my grandmother. I have never thought to link my cataracts to APLS. I will be most interested to see if anyone has traced any such links.
I was so astonished when the Ophthalmologist (not the one from today who is going to operate) said that I had a Cataract as I thought my vision with glasses was very good.
So this one from today (the operating Doctor) also thought that I should do it as my lenses were very cloudy. He said that all people at my age had cataracts but some of them were more in need of an operation. He absolutely thought that it was my decision if I thought my vision was ok.
I do not think either that it has to do with APS but I think that the vision in my right eye was worse after all my TIAs effecting the eye when I lost the vision several times and saw double etc. The left eye is ok. The eyes are so important and sensible.
Is your question more about having cataract surgery while having APS/ Hughes? So you are afraid because of this? And has anyone with APS/Hughes had cataract surgery, if so were there any problems?
I have had a lot of eye-issues as symptoms for this illness and my eye-vision is now 60 % on the eye where I had the TIAs (my upper right side was paralysed in 2002 among other things). I had several TIAS and amaurosis fugax (not sure spelling) also a lot of times. Kay Thackray has had the same experiences and tells about it in her book "Sticky Blood Explained".
I believe my vorsen eyesight might have something to do with the eye-symptoms I had before I was well anticoagulated perhaps.
I am not afraid but I want to do the right thing if possible.
my eye doctor first saw my baby cataract a good three years ago. He said that he has often observed that patients are oblivious to the problems their Cataracts present – excepting complaints about driving at night in the rain. Problem is, he said,that here in the States, insurance companies are reluctant to pay for cataract surgery unless the cataracts have been diagnosed for 2 to 3 years prior to surgery. But in many cases, by the time the patient notices the problem and they want the surgery, their insurance will not pay until they have lived with this problem for a couple of years at least. So, my eye doctor says he tries to observe and document such, " baby cataracts" so that when the patient believes it is time for the surgery, the surgery can be done. I'm still not ready for the surgery as I do not notice much of a problem.
In fact, a good part of my having to purchase a new car last year - after I was rear-ended by a distracted driver - is that I do not have as much trouble driving at night in the rain in my new car. I think it has something to do with the angle of the windshield. Bizarre. Who would think windshield angle could make that much difference?
I have had both eyes operated on. Right after the first, after I got home, I got a brief stabbing pain in my eye, followed by nausea. The pain was gone, I could see really well. I called doctor's office, but was told just come in tomorrow for scheduled followup. Doctor said everything looked fine. There was no more pain and sight was excellent. Slowly, the vision in that eye deteriorated. Glaucoma developed so bad that I had to have a shunt put in the eye to control the pressure which was up to 53. Sight has not improved. It is like looking through a dark lace curtain. Other eye had no problem. Later a neuro-opthamologist ordered blood tests and APS was diagnosed. This was two months after the event. Sad I lost some of the vision, but I am now taking aspirin and hopefully have avoided a major stroke.
As i understand you did not know of APS when you had your operation. Were you operated because of a Cataract and cloudy vision from "old age"or what was the cause for the operation?
I hope you now have a Specialist to talk to and anticoagulation for your HS/APS!
I was 72 when I had the surgery. I am also red/green colorblind. I ran a red light and decided i needed to have the surgery. The cataract not only dims vision, but also changes the color of things. I had never heard of APS although my dad had a clot in his leg from being shot in the leg during World War I. I was later told by opthalmologist that those that are very nearsighted are more likely to experience complications.
Just a hemo who has me on aspirin. Good news is my d-dimer is finally back in normal range. I also have very high titers of atypical discrete speckled ANA 1:5120, but not given any diagnosis on that.
I only know we must have a Specialist who has treated other people with autoimmun illnesses as HS/APS.That is exstremely important. Where do you live?
I suppose you were diagnosed by symptoms (stroke, DVT, PE, TIA) or other typical symptoms. Otherwise you were diagnosed by positive antibodies twice with at least 12 weeks after the first to the second bloodtest to one or all of the three antibodies they test for this illness.
I wonder if you need anticoagulation to be safe. Aspirin is no anticoagulation drug.
1991 I had inflammation in my right eye quite bad. Causing Uveitis, and Iritis Orbital many Floor Steriodal injections and large amounts of steroids. I believed this caused a cataract for me. I had the cataract removed 2001 I was 33 years old. I did have APS. with numbness and was taking Aspirin. The operation was very straightforward. Well worth the trouble of having it done. No adverse. effects. I am now 58. I think worth the risk to keep you vision. Cataract operations are so so straight forward and you should only need a small anesthetic you stay awake. and the operation is over and done with in no time.....
I reread on your posts here and we "talked" a lot 4 months ago and I suggested you should look for a Specialist who knows autoimmun illnesses as you have got, not only HS/APS, but also MS which can sometimes be mixed up with our illness. I know you are only on Aspirin and you tried Clopidogrel which is also another antiplatelet-drog and say you also had Plaquenil with no success.
You live in south east Queensland and I wish someone could give you a name to a Specialist of autoimmun illnesses who have had patients with our illness so he knows what he is doing and knows how to treat you. You had had issues from one side of your body etc and you are on Aspirin and probably need Warfarin or LMW Heparin(Fragmin) to avoid a stroke. We have too thick blood that must be thinned. Have you read "Sticky Blood Explained" by kay Thackray? She has had neurological and heart-issues like us.
Hi, it will be team work between your various doctors, however lots on here have successfully had this operation. I hope you manage to have the right support and have it done as soon as possible. MaryF
I had the cataract operation last December. It did take longer to tom heal because of being on warfarin. About 6 weeks. I have very good distance vision in that eye now. I have new specs so I can see fairly well for most things, but I still have a bit of double vision, which is a muscular thing not from cataracts. I generally need to take my specs OFF to read a book now!
You answered my question 3 years ago about having a Cataract operation while having APS.
No blood involved in a Cataract operation I have learned here in Sweden. I am astonished that it took longer to heal for you because of being on Warfarin!
I have also very good long distance vision now but I must wear eyeglasses for short sight of course.
I did never have double vision because of seeing bad. It had to do with too low INR. I had a lot of neurological symptoms (TIAs) with my eyes that was ok when I had a steadyINR of 4.0.
That had nothing to do with my needing an operation.
I hope your doubleseeing has nothing to do with a too low INR.
Thank you Everything fine now. The delay in healing was just a haematoma in the small blood vessels in my eye, it looked like I was a vampire for a few weeks and quite sore, but not serious at all. The nurse said it was normal for ppl on warfarin.
As I said before I do hope that the doublevision has nothing to do with your blood. It is important that you keep your INR steady all the time to avoid sudden changes in thickness.
I wish! 6.5 to 1.7 within a few days is my latest concern. I will maybe phone the specialist nurse once the holiday is over. And see what my result is tomorrow when the community warfarin service arrives.
If you do not have a Specialist who is working daily with people like us and other autoimmun illnesses perhaps, try to get that Doctor! He or she may help you to get a selftesting unit so that you will be able to have control of your sticky blood at home.
Most Doctors and nurses do not understand our curious, rare and unknown illness.
I can guess that perhaps you are also positive to Lupus Anticoagulant which makes it even more difficult to keep the INR in range.
A change from an INR of 6.5 to 1.7 in a couple of days is not acceptable. I can tell you that I manage my own INR since several years and decide about my Warfarin together with a specialist-nurse at the hospital.
If I should have that high INR one day I would eat around 10 brusselsprouts to get the INR down at a tolerable value (perhaps 4.0 or 4.5 for me). I should only change my Warfarin with 1/4 or 1/2 tablet and eat the same amounts of greens when my INR has landed around 4.0.
BUT we are all individuals with different weights and antibodies. You should ask for a shot to take when the INR is too low! That is important. I think your doublevision can be related to a too low INR.
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