Hi! I was diagnosed about a month ago with angioid streaks bilaterally. The RS who diagnosed me didn’t give me any treatment despite my complaint about wavy lines in left eye. I then got a second opinion one week ago and the RS put me on Avastin right away due to CNV in left eye.
I’m confused and worried of what will come next. I’m only 33 and have my whole life ahead a me. The information on the internet doesn’t really help me much. I don’t have PXE so my case is a bit different than what I found online.
Does anyone here know anything about it?
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chbn
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Could I just clarify, by RS, are you referring to a Retinal Specialist?
Have you seen the RS referred to privately or on the NHS? I am just wondering as you obtained a second opinion within 3 weeks of the initial diagnosis.
Have you contacted the second RS via their secretary and asked for a fuller explanation of why you have developed Angioid Streaks?
Here is a list of possible questions to ask them:
1.Which eye condition have I been diagnosed with?
2.Why have I developed Angioid streaks?
3.Why I am I developing it at this age?
4.What is the prognosis?
5.Is there anything that I can do to help protect my eyes?
6.What do I do if I notice any sudden changes in my eyes?
7.Are you going to continue to monitor my eyes at the hospital? If not, why not?
Just to make you aware, the impact of the diagnosis of any eye condition and indeed any stage in the process is generally compared to experiencing bereavement. Individuals frequently go through very similar feelings and responses and in no set order. We do have a free telephone counselling service. Please contact us for further details if this is of interest. I am copying a link to our booklet Emotional impact which references the counselling service:
Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments. Please ring us if you would like to benefit from this, or join via the following link:
It was rather complicated. I live in the US, but I travel a lot for work. The first diagnosed was made in the U.S by a retinal specialist referred to by an optometrist. I then flew to Thailand for work. I started to feel that my eyes were getting worse. I made an appointment to see a doctor there. The second doctor also went through the same exam and told me that I had CNV in my left eye. She didn't give me a lot of explanation, but she told me that I should start the treatment right away.
The cause of the disease is still unknown to me. I will be seeing another doctor in a week to figure out why I have AS. I will bring these questions with me.
In the mean time, I am trying to find any support group in the US. Unfortunately, I don't know anyone who can help. I'm trying to keep my head up hoping that what I have is mild, but the thought of getting vision loss is really bewildering.
I have cracks in the bruchs membrane in both my eyes which I think is the same as android streaks. I am very nearsighted and that is a side effect of the elongating of the eyeball. If CNV (retinal bleeds as a result of these newly formed delicate blood vessels) develops as a result and it can, then yes, treatment must be started. Be sure to get a second or even third opinion on this. Keep hopeful!! There are new advances everyday and be positive that you will NOT lose your vision. Just get all the info you can and step up your nutrition especially lutein and xeanthin (not correct spelling sorry) best of luck!!
Thank you BasiRose for your kind support. I am seeing another RS next week for another opinion. I am currently very depressed and have to take time off work because I can't concentrate on anything. My injection from last week doesn't appear to help with the distortion I have. I am trying to call the Mac Soc helpline but I couldn't seem to be able to connect. I live the US, so it is a bit difficult to make the call.
I live in the US too. Don't get depressed. Easy to say but I was so depressed when I first got my diagnosis that for the first two weeks as I adjusted to my "new normal" , I didn't want to live anymore.
I was originally diagnosed with CNV because I had a retinal bleed. Well, 25 injections later, a new doctor said he didnt believe I had CNV but rather retinoschesis. Retinoschesis is when fluid gets inbetween the retinal layers and can cause distortion and wavy lines!! I was in disbelief!! All those injections for what! There is no treatment for retinoschesis because it fluctuates and can stabilize for years. So I went from depair to relief because a doctor took the time to evaluate why the injections were not working and didn't just continue protocol like so many doctors do! Well, I hope this info could be of some use to you and again, stay positive. You are young and it can turn better for you too. Think positive!
CHBN. I am in the US also. Are you nearsighted? I have myopic degeneration I both eyes due to nearsightedness. I had a CNV on one eye a year ago. It took longer than a week to improve. If Avastin doesn't work for you, other drugs may help. When I was where you are, one year ago, I was so afraid. However, the vision on that eye is almost as good as before the CNV. My other eye has fluid on it that hasn't responded to treatment but still have 20/60 on it. Glad you have an appt soon.
Hi Alalex101, I am also near sighted, -6L -6.5R. I was wondering if you were able to recover from the emotional roller coaster. I haven't been able to get my mind off my condition yet. I don't know how long it will take. I really want to return to my cheerful state because my wife and I are planning for a vacation.
Diagnosis of a degenerative eye disorder causes us to go into a state of grief. One of my coping mechanisms is to verbalize it so I talked about it with anyone who would listen for a few weeks. I returned to work right away. I am not sure if letting everyone at work know was the best but I did. IT helped me with adjusting the screen resolution to best suit my vision and sometimes I held a magnifying glass in front of screen to check numerals. I also have a pair of glasses with a Rx for desktop computer or piano use. The distortion has lessened and 2 RS have assured me that there is no way to predict when another CNV will occur. My sibling has only 20/150 vision in one eye and blind I the other yet he still can watch TV some, cooks, and reads with a magnifying device so my concern is great. My Christian faith has helped me to accept that I have this and no one can predict how long I will continue to drive, etc. For now I try to improve my health habits and enjoy my life.
Currently, I keep this secret from work. I don't see any benefit from letting my employer know. I've made an appointment to talk to an emotional counselor to help me cope.
The distortion is still there (if not worsen) since the injection. It's only been two weeks, so I still hold out hope.
Oh you haVE TO CHECK OUT THIS NEW APP. IT CALLED SEEINGAI it is super cool and can do so many things. Read short texts, entire documents, facial recogniction. You have to train it to do that by puting your friends name in, It tells you curency, and color which is off. But this is new tec and they work to improve it all the time. I'm loving it.
Dear Chbn, I just saw that you are -6 and -6.5. That is moderate myopia and by no means considered severe. I am severely myopic. Im not sure but I am least more than double what you have. The last I checked (years ago) I was -8.50 and -8.75. Now I am so much worse. Some techs comment how nearsighted I am when I get the retinal scans done. I hate to hear it even though it's true.
Please get checked also by your primary doctor to be sure that there aren't any underlying medical conditions that are causing a secondary effect on your eyes. Just a thought because you never know.
Good luck and I hope and pray you find some comfort and optimistic outcome to what you are going thru right now.
HI , I have angioid Streaks. I have been fine until the last 4 years now I have had 6 hemorrhages. My reatinoligist who is amazing said I have a very aggressive form of the decease. I am so sorry to hear this. My brother also has this and you can have just the streaks on their own or there a few disorders that the streaks come with. Here are a few
Who Is at Risk for Angioid Streaks?
Although angioid streaks can occur without a systemic cause, most cases are associated with elastic tissue diseases. Up to 50 percent of people with angioid streaks have either pseudoxanthoma elasticum, Paget’s disease or Ehlers-Danolos syndrome.
Pseudoxanthoma elasticum (PXE) is a disease where deposits of calcium and minerals accumulate in elastic fibers in the body. This can affect the skin, eyes, cardiovascular system, and gastrointestinal system. Elastic fibers are a component of connective tissue which provides flexibility and strength in our body.
Paget's disease is a condition characterized by the bone deformity that is caused by an interruption in the process of bone regeneration and bone begins to be replaced at a faster rate than normal. Bones can become enlarged and weak.
Ehlers-Danlos syndrome is a rare genetic disorder that affects the collagen in our body. People with Ehlers-Danlos can have several different eye problems including keratoconus, high myopia, retinal detachment, lens dislocation and angioid streaks.
I have been told I have pseudoxanthoma elasticum. My brother was geneticlally when he had a massive hemorrhage at the age of 16. He lost all of his centeral vision from that. That was almost 30 years ago, they have made progress with the injections which really are not that bad. I am blessed by my Dr. Here is the way he does it. First numbing drops in the eyes and then he puts lidocain in the bottom lid at the top. So more freezing and then when I'm all frozen I get the injectings every 6 weeks. I go tomorrow. At first when I started getting them it felt like someone had shoved sand in my eyes. Then one of the nurses over did the ointment. Wow what a difference in recovery. I have known I had the desiese since I was about 27 but, was probably born with it they just didn't know to check for it. I was getting the Astravin injections at first which for most people are really effective. I began breaking through that medication and so they stepped me up to the stronges which I am still breaking through. We tryed going longer that 7 weeks but I had another hemoradge. I even have had the last 2 in my sleep, which I was informed was even more rare. If you need to talk or have any other questions please reach out. Not that this will happen to you but I have lost much of my vision in my left eye and my right eye is now 220.mmmmm not good. One thing I didn't know was that even when the bleeding dries up and your seeing better the scars left from the bleed can streatch. Thant is what has happened in my right eye.
Have you just been diagnosed or have you begun having problem. I also have to let you know some people have angiod streaks and it never gives them any trouble. Yes it's a rare on. Out of the over 1,000 pacients seen with verious conditions. There are 24 of us with angioid streaks. Lucky us lol. I will be praying that the astravin injections work if you have to have a hemoradge. If you do have one get into your retinologist asap and get an injection. If it's on the weekend get the fellow on call. Do not let anyone try it in the ER you need a specialist who knows this condition. I hope this helped. Please reach out.
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NEW HERE 
New here, Myopic Macular Degeneration when to get off avastin and on to eylea and what to expect? 
Anyone with idiopathic CNV out there?
Where do I go from here?
