Help! "Unexplained Loss of Vision"

Hello everyone,

This is my first blog post and I can't wait to hear from the TuDiabetes community. My wife has been diabetic for 26 years. She was diagnosed when she was 8 years old. She has always been fairly stable and since I met her she hasn't had an A1c above 7. We have a 19mo old son. The only problem is that she is facing blindness in her left eye (and possibly right) and none of our doctors can explain why. I am sharing our story for a number of reasons. My first hope is that someone can help us find an explanation (or better yet - a solution) for her vision loss. I am also looking forward to hearing your stories as well. Is anyone else out there experiencing unexplained vision loss?

Note: If you are reading this and you do not have any vision loss, don't worry. One doctor told us that what we are experiencing can be compared to being struck by lightning (1/6250 according to wikipedia).

Here's our story - thanks for reading!

In October of 2012, my wife was first diagnosed with Diabetic Retinopathy. The doctors told us that if this were the 1960s she would be blind within a decade. However, thanks to modern technology, they can treat 99% of the problems that arise due to Diabetic Retinopathy and she would not lose her eye sight. The doctors acted quickly and performed three scattered photocoagulation laser surgeries in both eyes. This treatment is the gold standard for treating Diabetic Retinopathy. Everything with the surgeries seems to go flawlessly. She still had 20-20 (corrected) vision in both eyes and all was well!

In March 2013, my wife began noticing a small 'blind' spot in the very center of the field of vision of the left eye. Her doctor performed OTC and fluorescein angiogram tests, but could not identify the root cause. Everything looked healthy. His only suggestion was that there was a tiny hemorrhage, not visible in the tests, in the very center of her retina (the part that is used for her center field of vision). He told us not to worry and that it would likely repair itself.

Over the next few months, the small blind spot started getting larger. Her visual acuity decreased to 20-40 in her left eye. The doctor could not find anything that could attribute to the vision loss she was experiencing. He did see signs of Capillary Nonperfusion, but not severe enough to cause vision loss.

We decided that would be a good time for a second opinion. In July, we turned to the number three eye institute in America - the Wilmer Eye Institute of Johns Hopkins University. On her first visit at Wilmer, her visual acuity was 20-80 in her left eye. Things were getting worse, but we felt confident that they would identify the problem. Between the dates of July 15th and October 30th, they put her through every test known to man. We saw 5 different doctors 9 different times in 3.5 months. Still no explanation could be offered. There were minor signs of Capillary Nonperfusion, but at the same levels there were back when she had 20-20 vision. This doctor described the Nonperfusion as Macular Ischemia. During all of these tests and appointments, the visual acuity progressively got worse. By the end of October, her visual acuity dropped to 20-250. She could no longer see how many fingers you held up a few feet away.

In November, we turned to the number two eye institute in America for another 'second opinion'. The Wills Eye Hospital at Thomas Jefferson University. While we have not had any luck diagnosing the problem, we have found a very impressive doctor and have decided to make the doctor at Wills our primary Ophthalmologist. Our new doctor said that we should not expect the same problem to occur in the right eye.

Today, her visual acuity is still approximately 20-250 in her left eye and 20-20 in her right eye. We need to keep her right eye healthy at all costs. Unfortunately, all we can do is wait and hope and pray. There are no more tests to run. There are no treatments available. I have read about several experimental treatments for Macular Ischemia, but none of them are approved by the FDA yet. Of course, we would need to get some confirmation of what is causing the problem before she could participate in a clinical trial.

This week, my wife noticed a tiny 'blind spot' in her right eye. We are seeing the doctor tomorrow. We are hoping that there is a small Edema or something that will correct itself or can be treated and that it's not another "lightning strike" starting in her right eye.

Thanks again for reading. I look forward to hearing from you.

-Dom

There really are no certain answers to provide. You are seeing the best doctors, and if they cannot provide an answer it is unlikely any of us have the magic name of your wife problem. i wish we did, but I doubt it will be so.

Diabetic Retinopathy is thought to be a disease closely related to high blood sugar. That is not always the case. There are perfect diabetics who have thinning weak small vessels and poorly controlled diabetics who never get the disease. I know it seems random and unfair, and it is.

I wax poorly controlled for years and have only the most minor hint of Retinopathy and my mom was as tightly controlled a person as I ever saw and she had full onset blindness within a few years of diagnosis. now that does not mean that I wont have full onset Retinopathy when I see the doctor next week, I can only speak of my experience up today.

Now I will admit to knowing nothing about Macular Ischemia so i am at a loss in that area. I am sure you knwo far more than me about this.

What I do knwo is that small vessel disease crops up as a result of diabetics living longer. Take the early days of Diabetes treatment, there was almost no small vessel disease reported. Why? Because diabetics usually did not live long enough to show symptoms. Take my Aunt Patty she only 3 years post DX and as such she did not experience any of the modern disease outcomes of diabetes. Instead she passed as a result of a wide ranging infection brought on by a ruptured appendix, that doctors were afraid to operate on.

Now I said all of that in a clinical kind of way , and I do want to let you know some truths. First we in this community do understand the terrible struggle you are involved in. For me blindness is perhaps the scariest of the big three blindness, kidney failure, nuropathy. So I am very sorry that your family is going thru such a terrible and scary period. Believe me, I have seen it, not understood it and lived it. It is absolutely scary.

Second, do look look at small vessel disease as a category of diabetic outcomes. I knwo I said I do not have major signs of Retinopathy, but I do have its cousin small vessel disease. Mine is located in my heart. One thing small vessel disease does is pop up anywhere there are well small vessels. The eyes seems to be one perfect place where this occurs. The heart another, feet a third prominent place. Some people have issues in all three some in one or another.

I take a drug called Renexa for the SVD and it seems to help. I mean I suppose it helps, since it is in my heart I cannot see it or tough it. It is difficult to think it is real. My cardiologist says it is and I have to believe her. SVD is like clogged arteries except on a small scale. The small vessels no longer carry blood appropriately and when that happens they break, or in the eye burst.

I am not saying this is your wife's issue, only doctor can say that, but one place among many to think about checking in with might be a cardiologist. Perhaps a quick check in might provide something to eliminate. It is just a thought. Oh and by the way, she also tells me doctors do not fully understand how Renexa works. Only that it does.

Finally let me say again I am so sorry for this issue. Please knwo she and you are among people who more than anything understand that diabetes is not fully a clinical disease. It is not always do this get that. It is sometimes, do this get a truly different outcome than expected.

My friend, I hope my little essay helps. But I also know that short of getting this fixed will ever help. Int eh mean time know this you have found a great space to vent, ask questions and hear of others experiences. No we may not know the answer, but we do know what you, your wife and your whole family are going through, you are among friends in this space. We wish you and your wife the very best.

Hi Dom,

I don't know anything helpful, but I wanted to say that my heart goes out to you and your wife dealing with this huge challenge!

Thoughts and prayers are with you!

marty1492

Hello Dom, I'm so sorry you and your wife are going through this, I know how terrifying this can be since my vision was also affected in dka and no one could really tell me what has happened except there was sugar in the lenses. It did improve a lot. I hope you figure out what is causing this, please don't give up. I think Rick's suggesting is good. I would see a cardiologist and another retinologist/eye specialist also at one of the other best hospitals for a second opinion. There has to be someone who can figure out what is causing this. hugs, and prayers for you both.

I'm not sure if this video will help at all, but I'm posting it here for you just in case.

http://www.youtube.com/watch?v=pfo09jzGc5E

Thank you all for writing and for thinking of us.

@Rick, one of the main reasons for posting here was to hear of other's experiences. Thank you for sharing yours with us. You make some interesting points about how we are still learning about long term effects of diabetes. I like your suggestion to see a cardiologist. I have not heard any of our eye doctors discuss SVD. I will also ask our eye doctor about SVD and Renexa tomorrow. Good suggestion!

@Marty - Thanks for keeping us in your thoughts and prayers! We need all we can get right now.

@ meee - You are right, it is very scary and thank you for writing. We haven't seen any signs of dka, but this could be a contributing factor. What kinds of vision problems were you having? Was your vision impaired in a similar way as my wife's after dka? Perhaps this is a contributing factor. Did your vision improve on it's own or did you have some kind of treatments performed?

Thanks again everyone!

Blessings. I will be thinking of you.....

Hi Dom, After or during being treated for DKA, I was in the icu for 4 days, both my close and far focus vision went completely blurry. I could see only with 3 plus reading glasses and even then things were kind of distorted and it was difficult at times. I couldn't drive at all for around 4 weeks or so I went though 2-3 rx glasses but the reading glasses seem to help me the most. When I went to the Er I was seeing flashing lights and floaters or something like that. Before DKA I had visual changes and blurred vision, my eye doctor didn't do anything really. My vision when from 20/20 to 20/70 and then seemed to improve a lot before the DKA. It did improve a great deal over time, after 2-3 months I could see much better, my eye doc was surprised 1- that I lost both close and far focus and 2- that it improved so much and so quickly. I still need reading glasses all the time for any close vision and sometimes for distance. I still have no real explanation of what happened except that as my endo said in the hospital there was glucose in the lens from high bg and it slowly came out over time. I have been to 3 retinologists and they can't find any damage there, I'm going to another this week who will take pictures and I plan to ask her about the two tests for retinal nerve cell damage in the eyes mentioned in that video: contrast sensitivity and color vision. Apparently from what he said, you can have retinal nerve cell damage before it actually shows up visually which is not surprising. Although my vision improved a lot, my focus still fluctuates a lot with bg fluctuations. I had not treatments performed because they didn't really seem to know what caused all of this, and there is no damage to the retina so far, the last doc said I have a tiny shadow of cataract but it is nothing serious to worry about, they just say this is the way my vision will be now. I try to keep my bg as stable as possible and I do a lot to take of my eyes- vitamins, healthy food, drops for my dry eye which was really bad a few years ago, motorcycle goggles, and tranquil eyes at night with the drops to keep them hydrated etc. I recommend going to as many eye docs as you need to till you get an answer.

I am very sorry to read what your wife is going through. In my opinion this might be totally unrelated to diabetes. It is speculation but the rapidness of this development might be based on some type of retinal arterial occlusion - like the Ocular ischemic syndrome. If so the treatment should follow the protocol of strokes and should be started within 24 hours. Better contact your doctor ASAP.