I have retinopathy/Macular edema in both of my eyes( leak problems started in 2011) Should I start thinking about getting a service guide dog? I keep hearing keep your blood sugar low and get laser surgery but my vision changes every time i get up in the morning and during the day. I'm not near the legal blind stage but I'm scared, there is no cure for retinopathy
Hi Missrobbie!
Actually, they mean to lower the blood sugars to the normal range since Retinopathy is caused by long periods of high blood sugars in most cases.
Laser treatments do not "cure" Retinopathy but it can repair it. I had my left eye lasered about 29 years ago and my eyes are still stable which is good.
I would be thinking of getting my eyes repaired and working on my sugars first........then maybe a guide dog. I've heard of Macular Edema(swelling?) but I do not have that nor know enough about it.
Hi, I would like to share my story to encourage all of you with retinopathy. When I was diagnosed with diabetes five years ago, I had already serious retinopathy in both of my eyes. Even with a lot of laser treatments my vision was at some point only 5-10%. I was really scared, but after Avastin injections (also used for macular edema as I understand it) in both eyes, and a vitrectomy in one, the eyes started healing. Now, after four years my vision is 60% and I cannot express how grateful I am :) Of course have to have regular controls to check if the eyes are still stable, and try to keep the blood sugars normal. Prayers & medical treatment really help! Blessings to you all,x
missrobbie,
I have retinopathy with macula edema. Getting control of my blood glucose really helped as did getting my eyes treated by a retina specialist who recommends keeping control of blood glucose, blood pressure, and cholesterol. The newest drug, Lucendis does actually restore some vision, so you definitely want to see a retina specialist as soon as possible. I haven't started taking statins, but cholesterol is important because macula edema results from having lipids permeate the blood vessels in the eye and drop into the macula. After the edema is flattened, the lipids are still there as scar tissue.
Getting control of you blood glucose is tricky when you already have retinopathy. Drastically and suddenly lowering it can actually make the retinopathy worse. So be careful. I follow Dr. Bernstein's advice.
Yes indeed, a very important point Amanda. My doctor also adviced me to lower the blood glucose rather slowly and not too suddenly. Big fluctuations are the worst. And that remains difficult sometimes, we all know that...
I have more questions
1. How do you guys go to work every day when your vision is impaired? I was furlough from my job 2 weeks ago because my vision impaired my job performance ( my clerical job gives their employee a job performance test every April to see if we can work year round or just 2-3 months ).
2. Is there a different between retina specialist & opthalmologist ? I've only been to an ophthalmologist and my ophthalmologist only gave me laser surgery and never told me about Lucendis,statins & Avastin injections?
3. I have to slowly lower my blood sugar levels(ouch)
Miss Robbie,
I'm sorry to hear that you have been furloughed. I kept working through the worst vision problems, but I had to use a magnifying Ott light, and lopes. I had a helpful boss. After awhile, my vision cleared enough so that I could function without all the magnification although it is still difficult for me. Yours may clear up somewhat because some of the problem is just from diabetes, not retinopathy.
Yes there is a difference between a retina specialist and a general ophthalmologist. A retina specialist is an ophthalmologist who has had additional training in diseases of the retina and should be board certified.
I would also try to find a low vision specialist. They can make life a lot more manageable and have a lot of good advice and can help select the best tools to try to keep you at work.
Missrobbie-
I went through all the same crap you are dealing with now...and had to keep dealing with it through 5 (yes...FIVE) vitrectomies until I finally came upon a cooperative retinal surgeon who reccomended I call a disability lawyer - which I did. They were very helpful and understanding and I could finally put my eye problems behind me ONCE AND FOR ALL. Let me know if you would like more info...good luck and PEACE.
Steve D,
I never filed or looked at disability because I'm not permanently legally blind in one or both eyes with my glasses on (between 20/100 and 20/200) . I'm "temporary" blind until this blood clear up in my eye.
But in 2011 & 2012, my left eye was given me vision/bleeding problem(I can see in the right eye for now ) but my right eye started to bleed in Feb 2013 and right now, I can't clearly see in this right eye after surgery in March. I'm seeing flashing lights in both eyes too. I'm unemployed, my health insurance doesn't cover all my laser surgery & I'm in DEBT and I don't know what my job,income or vision future will be for the rest of this year.
Missrobbie=
I know you dont THINK of yourself as legally blind, but chances are you are. I would recommend you at least speak with a disbility attorney and explain your difficulty holding a job b/c of your vision problems.
I have retinopathy with macula edema since 2010. And diabetes type 1 since 1967. So my edema is just in my right eye. My ophtalmo told me that I will need injections inside my eyes. nightmare! so I want to ask how do they treat edema in USA and anywhere in the world. I'm French and live in Lyon. my two eyes got lots of laser since 1993.
Brigitte-
My retinal surgeon told me the same thing about three months ago...but for some reason he just backed off on the injections. I couldnt sleep for about two weeks when he first told me, I have had 5 vitrectomies but in those cases they pretty much dope you up before sticking needles in your eye. I would just ask is there any way they can sedate you for the procedure. This crap with the eyes is the worst! Good luck!
Brigitte,
Usually a combination of injections and laser treatment, done in the doctor's office. The treatment is usually one injection in one eye; then a week later, one in the other eye, if both eyes need to be treated. Then an angiogram is done to see where the leaking blood vessels are, and laser surgery is done to cauterize the leaking vessels, again one eye one week and the other the next.Then after about a month, the eyes are examined again, and treatment may be repeated.
Miss Robbie,
You should certainly look into disability payments and what kind of public assistance you qualify for. Locally, we have eye doctors who will treat unemployed or uninsured patients at no charge.
Amanda02,
Does this eye doctor have an office in California?
Miss Robbie,
Unfortunately, this is in Virginia, the East Coast, but try looking into what is available where you are.
Steve,
This is done under local anesthetic. First the doctor dilates the eye; then pours lidocaine into the eye, then does the injection. It only takes a few seconds. It isn't any worse than having a tooth filled in a dentist's office.
the best retina guy I ever had is Dr. Sebag, he's in southern CA
http://www.vmrinstitute.com/html/meet.html
Many thanks for your answers.