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Choroidal Neovascularization
Biology 103
2003 First Paper
On Serendip
Choroidal Neovascularization
HoKyung Choi
If you had to give up one of your five senses, which would it be? Would you give up your ability to see? A startling number of people lose their eyesight due to an eye disorder known as choroidal neovascularization. And soon I may be one of them. Although there is no known cure for this unfortunate disease, studies have been conducted to find the appropriate surgical treatment.
The outer portion of the 2.5 cm human eye is composed of three primary layers of tissue. The outermost layer is called the sclera, which acts as a protective coating. Within this layer the transparent cornea is present in the front area of the eyeball. Under the sclera is the choroid where the majority of blood vessels and the iris are located. The light-sensitive layer is known as the retina.
As mentioned, the choroid contains most of the eyeball's blood vessels. It is also the layer prone to bacterial and secondary infections. Choroidal neovascularization is a process in which new blood vessels grow in the choroid, through the Bruch membrane and invade the subretinal space. Because there is currently no medical treatment for this disease this abnormal growth can easily lead to the impairment of sight or complete loss of vision.
Three main diseases that cause choroidal neovascularization are age-related macular degeneration, myopia and ocular trauma. The Wisconsin Beaver Dam Study showed that 1.2% of 43-86 year old adults with age-related macular degeneration developed choroidal neovascularization. The study also proved that choroidal neovascularization was caused by myopia in 5-10% of myopes. Ocular trauma, another cause of choroidal neovascularization, is for reasons unknown found more often in males than females. More than 50 eye diseases have been linked to the formation of choroidal neovascularization. Even though most of these causes are idiopathic, among the known causes are related to degeneration, infections, choroidal tumors and or trauma. Among soft contact lens wearers choroidal neovascularization can be caused by the lack of oxygen to the eyeball. Unlike age-related macular degeneration, age is irrelevant to this cause.
Although no medical treatments have proven to be a cure for choroidal neovascularization, particular antiangiogenic substances such as thalidomide, angiostatic steroid, and metalloproteinase inhibitors are currently being tested. Through surgical testing, partial removal of choroidal neovascularization proved to be useless. Therefore the focus has been placed on photodynamic therapy, a procedure approved by the Food and Drug Administration.
In choroidal neovascularization patients, the fluid and blood along with the formation of new blood vessels form scar tissues which are trying to repair damages but are ultimately the cause of blindness. Photodynamic therapy is a treatment meant to stop the fluid as well as stunt further growth of the blood vessels among patients. Photodynamic therapy is performed in two phases. In the first phase Visudyne, a special dye that only attaches itself to abnormal blood vessels underneath the retina, is injected. Then a laser which does not damage the retina activates a compound which closes the anomalous blood vessels located in the eye. CNV has been seen to disappear 24 hours after the procedure. Unfortunately, CNV has also been seen to reappear 2-3 months later in almost all the patients and long-term benefits are still unknown. However, in a year-long Treatment of Age-related Macular Degeneration study of 609 patients16% of treated patients and 7% of placebo patients had visual improvement.
Another type of treatment that is being tested in a study called the Submacular Surgery Trials is an experimental procedure known as submacular surgery. This procedure is performed from the inside of the eye in order to work on the retinal tissues to remove and replace the vitreous fluid. The downside of this procedure is that in order to heal the patient must be face-down for several weeks after the fluid is replaced.
It is most unfortunate that there is still no effective medical treatments nor any completely successful surgical treatments because I was recently diagnosed with choroidal neovascularization in both of my eyes. Although the knowledge I have gained by researching this disease has been personally enlightening, the facts are frightening as well. But to remain optimistic, it is somewhat comforting to know that there are studies such as the Wisconsin Beaver Dam Study and the Submacular Surgery Trials working towards a cure.
References
1) Unified Medical Language System, Medical term dictionary
2) Submacular Surgery, Information about submacular sugery
3) The Royal College of Ophthalmologists, Information about photodynamic therapy
4) Barnes Retina Institute, Education website on photodynamic therapy
5) Ocular Photodynamic Therapy for Choroidal Neovascularization, Description of ocular photodynamic therapy
6) Eye (anatomy), Explanation and overview of the eyeball
7) eMedicine, Journal article on subretinal neovascular membranes
8) eMedicine, Journal article on choroidal neovascularization
Comments made prior to 2007
Hi! i'm Abie from the Philippines. I just saw your website when I was doing a research about choroidal neovascularization. My dad currently has this optical problem, and the doctor said that he has to undergo a certain operation called Vitrectomy. The problem is, during the operation, there is 2% chance that he'd get blind. I know that's it's just a very small chance but still, we are scared of the consequences of this operation. Is there anything that we can do to avoid that? What medicines can he take? I hope you can help me with this. Thanks! ... Abie, 4 April 2006
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Pic with myopic cnv as complication
Hello,
I was diagnosed with punctate inner choroidopathy in my right eye before 4 years. Sadly, before 1 year CNV has developed so I've received 5 injections of Lucentis and steroids tablets. Luckily, my left eye is not affected. Injections seem to be working, leaking has stopped. I'm having appointments every month for monitoring. My biggest concern is about having a baby. I am only 28 years old. Me and my husband want to have baby, but I'm affraid that my condition will get worse during pregnancy or It will develop in my healthy eye. My myopia is -7. Maybe someone could share expierence because now I am very depressed. Thank you!
CNV-Do you have a Cat
Wondering if you have a cat to see if this is a common theme with the CNV. I know someone who has it and has a cat.
I had a cat when it started
Hi, interesting. Do you really think it really has connection - cats and this eye condition?
Hi, I have PIC with CNV too.
Hi, I have PIC with CNV too. There is a PIC support group in Facebook where you might be able to find some more answers. A lot of people seem to go into remission during pregnancy but then have a flare after birth
CNV on one Eye
Dear all
I had CSR on left eye untreated for 4years (the eye doctor advised to monitor). However after 3 opinions for the last 4 years, I seeked a 4th opinion to see if there was any solution to it. The eye doctor advised confidently that going for PDT (cold laser treatment) was safe and would permanently seal up the leakages. Unfortunately after PDT, I developed CNV on the central retina which was 'explosive' looking on the scan. So far i jave gone for 3rounds of Lucentis, 1 round of Eylea injections. The active blood vessels have subsided to an extent, but permanent scarring has developed on the centre of the left eye, which looks look an opague white patch when i look through the bad eye.
I am in my very early forties and may lose my job as it requires good eyesight. My life has been greatly affected as the good eye has difficulty compensating the CNV eye, and the resulting overall vision is blurry. I experience glare when its sunny or bright. I have difficulty reading and pretty much doing everything due to blurry vision, glare, easily tired eyes, and a good eye which deteriorated in terms of astic and longsightness (both from around 50deg to 120deg over the last 2 months since i developed CNV).
I have lost all apetitie for food, and zest for life in general. Everything I look at seems to trigger panic attacks as its really uncomfortable with the overall blurry vision. I sleep with assistance of pills 90% of the time the last 2 months and even so, i can hardly get 3-4hours sleep each night, sometimes staying awake hyperventilating through the night. I feel trapped in a blurry world at an age where I am about to start a family and still need to work in order to provide for the family. The vision is just really frustrating and affects my ability to think, express, and relax.
Does anyone have similar experiences? I have great difficulty adapting to a somewhat good eye and a CNV eye with central vision loss. Its been almost 3 months, and there seems to be no adaptation improvement.
Thanks for your listening ears..
Hello; Your description is
Hello;
Your description is very similar to my own. I developed vision loss in my right dominant eye. Retina specialist misdiagnosed it as CSR and was told to return in 2 months. By that time my vision was very bad in the affected eye. I consulted with another opto and was told that he suspected CNV because it was bleeding slightly on fundus exam. Further testing revealed CNV under the center of macula(subfoveal). My vision was 20/200+ and after avastin injections for four months, it improved to 20/80. The vision is distorted blurry and there is major glare like I saw a camera flash(the afterimage of a camera flash) It is absolutely maddening, it has caused me to feel suicidal, severe anxiety, and major depression. I am now treating also with a psychiatrist and therapist. I am a very visual person and it feels that so much has been taken away. I also just recently had PDT(a week ago) and there is even more blurriness and glare though my opto states that this will resolve to baseline or possibly even better after several weeks. I wish all the best for you. Remember, there are new treatments coming around the corner for CNV and perhaps in a few years a cure will be there.
CNV-Do you have a Cat
Just checking to see if this a common theme. i.e. infection from cat causing this issue-
hello, I am so sorry to hear
hello,
I am so sorry to hear about your condition.
I totally believe it has a huge impact on all aspects of life.
My husband also has CNV in one eye and is currently undergoing treatment.
I didn't understand from your message if you are getting treated for the CNV.
Are you taking the injections ?
This seems to be very helpful to treat CNV that is not related to age related maculopathy.
Also did you receive orientation from a low vision specialist ?
I understand there are options to assist people experiencing such condition.
May I ask where are you from ?
I red that in US it was developed a kind of bionic glasses that in some cases allow even to drive again.
Of course, it all depends on your specific details, but there may be solutions.
When my husband first received this diagnosis we both got totally scared, but we cannot give up on living.
Especially that nowadays there are so many supporting technologies.
And maybe sometime not very far in the future even stem cells retinal regeneration can be offered to patients.
I know it's difficult, but maybe with the help of a psychologist or the support of an association you can overpass this phase.
We also plan to have a child and the future can be scary during the dark hours of the night.
I know this very well because I suffered of panic attacks and anxiety.
In my case, the psychologist did miracles with me.
But I know the nights are the worse.
Try starting with small steps, get as much information as possible about treatment and/or low vision aid - I didn't understand exactly the cause of vision deterioration in the good eye, but this needs to be checked by the eye doctor.
After this you will see you'll be able to think about the future again. Some adjustment may be needed, but we are adaptable, we need to be.
My husband is already profoundly deaf and now has also this eye issue. And even so we don't give up.
Trying to live our lives the best we can and take the most out of the available technology.
stay strong and do not give up on the future !
CNV-Do you have a Cat
Wondering if having a cat is a common theme for CNV Patients-
help me with some information
Hi all,
Thank you for sharing your stories, it can be really helpful to read.
I would be grateful if you could help me with some information.
My husband has been recently diagnosed with CNV due to high myopia.
He has the CNV in his left eye, already got a the first shot.
As the "good eye" is not a perfect eye - it was all the time the "better eye" - but however is still a myopic eye I would be very grateful if the people that have this condition can help me understand it better
At the moment he mostly relies on that eye to function normally. But using mostly one eye can weaken it ? Is it possible to damage the other eye of extra use ?
Also, people that suffer of decreased vision due to CNV do have some useful function out of that eye or not ?
For example, using only the affected eye is ehough for safetely walking or not ?
Maybe my questions are silly, but I never experienced any issue with my vision, I have perfect vision I could say and it can be hard for me to understand. I don't want to press him with questions and his doctor seems a really good doctor, but not a great communicator.
I need help to understand the level of useful function can exist in an eye affected by CNV.
Also, if he has it in one eye the risk to develop it in the other is very high ?
Thank you so much for your help !
Hugs
Irina
CNV
Irina,
There are no silly questions when it comes to CNV. It is a scary diagnosis with limited information and support. The good news is there is reason for hope. CNV especially in the young or middle aged has a better chance of responding to treatment. The Avastin and similar medicines worked very effectively in slowing and eventually stoping my CNV. Once the retina is stabilized and and the lesion (leak) stops, it is possible for your vision to regain a lot if quality sight. I have been in remission for over 6 years now with no reaccuring leaks and no CNV symptoms in my other "good" eye. The lesion left a scar through the middle of my retina and line of sight but I see through and around this scar. Everyone is different of course but I was amazed when I could eventually read again with my CNV eye and even pass an eye exam 20/40. Having it in one eye does not mean the other will get it as well. Relying on the good eye should in no way cause damage to it. There is a link between hormones, stress and elevated Cortisol levels. I am not sure if this would apply to your husband because his diagnoses was Myopic related however I always feel it is still worth noting.
I wish you both the best and I am sorry you are going through this.
Sincerely,
Kim
Info
Thank you for the information. My sister was recently diagnosed and I will share your story with her.
Alison
Hi Irina, Sorry to hear about
Hi Irina,
Sorry to hear about you husband. CNV is definitely scary when you first are diagnosed. There's a feeling that you are going to go blind and the world as you know it will completely change. I was diagnosed with it in my right eye in April 2010. At one point, I even saw a traditional Chinese medicine doctor to see if that would help. She told me I would get CNV in my other eye within 1-5 years, which really scared me. Other doctors said there's no guarantee. My left eye is still fine just over 6 years later, so there is hope for patients with CNV in just one eye. Oddly enough, when I was first diagnosed I found out that my boss at the time also has CNV in one eye. He's had it for more than 20 years now and his good eye is still fine. Learning about his case helped me relax and not worry about it so much.
A couple of doctors told me I don't need to spend less time on computers or watching TV. Your good eye just does what it does. It doesn't work any harder than before. But if you are experiencing eye strain, headaches or just feel tired, give yourself a break. The big adjustment is from your brain. Over time, your brain learns to ignore the information from the bad eye and your vision won't seem so bad. Like others, the scarring in my bad eye is in the center and thus my central vision in that eye is basically non-existent. So it will affect your husband's depth perception. But you still get peripheral vision from the CNV eye that is valuable. Your husband probably is scared and many men internalize their emotions when feeling this way. He probably feels helpless and worried about being able to provide for his family. He may feel comfortable talking about it in time. I would suggest not pushing him. You can always let him know that he can tell you anything when he's ready.
Hope this helps a little.
Good luck, Marc
CNV
Hi Irina,
Sorry you and your husband are going through all this. If he is monitored closely and getting treatment, his chances of keeping a lot of vision are very good. The key is to see the eye doctor whenever he notices any changes, not to wait, because it is crucial to get prompt treatment if you have a bleed. I don't think using one eye can weaken it. I have never come across anything saying that. However, if he were to patch the bad eye (which I have been tempted to do before in order to focus better out of the good eye), the patched eye can become lazy from lack of use, so they don't recommend that.
As to your question of whether people have useful vision in an eye affected by CNV, I think there is probably a wide range out there. I think it rarely takes away all vision, but it really depends where the scaring is and how quickly it is treated. Mine is right in the center of my eye, so I have pretty much no central vision in that eye. I eventually found out that my CNV is from an inflammatory condition related to myopia. Treatment for that has caused glaucoma and cataracts. My eye is constantly dilated and I pretty much can only see 20/400 out of that eye right now, but I'm still amazed at how much I CAN see with that level of loss. It's all in flux right now, so I hope that I get more improvement, as I originally got down from 20/400 to 20/40. I HIGHLY recommend requesting an ICG dye test if your husband's doctor did not do one. It allows them to see more in the retina than with OCT and fluorescein angiography. I saw several well known retina specialists and none of them did this test on me. When it was finally done, they discovered an inflammatory condition that had gone untreated for 7 months, causing permanent damage. There is an article on pubmed about myopia and inflammation: http://www.ncbi.nlm.nih.gov/pubmed/22454750. It talks about the "iceberg" effect of the ICG test because so many things can be missed without it. Not saying everyone has something that can be found on that test, but it is certainly worth ruling out inflammatory lesions as a cause of vision loss at the outset.
Hi Andrea, Thank you so much
Hi Andrea,
Thank you so much for your reply !
It's really a terrifying situation as my husband is also deaf waiting for a cochlear implant.
Now the idea that this may happen to the other eye is horrible.
Yes, we went to the hospital the same day and received the shot the day after.
It's in the centre of the eye, but at least the doctor says it's small.
At least here, in Portugal, you don't need to go to a GP first and so on, so you can save a lot of time.
Did you try low vision aids, like magnifiers and so on, or you don't take any benefit of them ?
My husband is a computer programmer so he depends a lot on his eyes to work.
Since this started he also experienced a lot of headaches. Do you know if this is a normal consequence ?
I pray for his other eye stay stable as much as possible, it's something that even if it's not life-threatening it can be a nightmare.
Let's hope the new discoveries regarding retinal regeneration with stem cells will be soon available for patients...
It sounds like a small hope for the future.
Hugs
Hi again, That's excellent
Hi again,
That's excellent that he got quick treatment. That is really the key to saving vision. He should immediately see a doctor anytime he thinks something is changing in his eye. I don't use any low vision aids, except that I constantly enlarge my computer screen and devices. I do carry around a magnifying glass to see small things at the grocery, etc. I did see a low vision specialist at one point and she showed me a lot of tools that are available if I should need them. I only have one eye affected so far, so I have been able to adapt, although not to read at the same level and degree that I used to. I do sometimes get headaches if I read a lot, especially on a computer screen, so I try to limit my time on them. I have had to take a break from my career, as it involved constant reading and looking at a computer. I hope your husband gets improvement from the injection and that his other eye stays stable. Hang in there!
hi Andrea, hope you are fine
hi Andrea,
hope you are fine :)
my husband has been working despite the problem. in a way it's good he's not on medical leave because he would probably felt depressed to stay at home. so far it's only been 3 weeks, the doctor advised that it will take about 2 months to feel improvements. but at list he told me he can now see the little ball on the amsler grid. a very small step, hope it's a reason to be a bit more optimistic.
the doctor did not make the test you were talking about, but from what I red on your previous posts you take immunosuppressive drugs. if this is the treatment, my husband already does it as he had a kidney transplant and he'll always take these drugs. also it's very unlikely to be able to make changes on this treatment to not overwork the kidney... but I'll ask the doctor about the test.
so is there any hope for you to get improvement with the treatment or is there already permanent damage ?
I do look forward with a lot of interest for the stem cell retinal regeneration research... I red that in UK they'll start a second phase with about 10 patients soon. and in Japan also.
let's hope and pray that the treatment will be available for patients soon.
I'm really happy I can talk with you. my husband doesn't like to talk about it too much, maybe he's scared I guess. I would also be...
have a great weekend !
Dietary measures for CNV
Hi Everyone,
My father had CNV in left eye some 10 years back and recently it has started to occur in right eye too. He has gotten his 3 Avastin and he feels his vision has improved post that, but it has just been few days back that he was administered his 3rd shot.
Just out of curiosity, can any one please help me with what dietary measures he should follow to prolong the acuteness of CNV in right eye? Please suggest!! Thanks a lot in advance
dietary measures
If you google anti-angiogenesis foods, you'll come up with a list of foods that help prevent the growth of new blood vessels. Lots of antioxidant rich foods, like deeply colored berries, leafy greens, turmeric, garlic, ginger, etc. There is a TED talk on foods to help with angiogenesis. It mostly relates to cancer, but is equally applicable to growth of blood vessels in the eye.
Idiopathic CNV
Hi there
I was so pleased to find this site, I live in the UK on the Isle of Wight, and my consultant has no other patients like me, no one to make contact with who understands how upsetting this condition can be.
I am a 33 year old mother, 8 months ago I developed a very bad headache with some visual disturbance. We were moving house at the time so simply put it down to stress. Several days passed and it had worsened, and I had a blank spot in my central vision in my left eye. I finally got sent to the eye department and after a few weeks of returning for tests they diagnosed Idiopathic CNV.
By this point it was already scarring so was told there was no treatment, it would settle down and over a few months my brain would adjust to the mixed messages it is receiving, all would be fine with my good eye.
It seems that as I already wear glasses for short sighted-ness and my left eye is my weak eye, the other eye had been compensating, which is why it was so well developed before I noticed anything.
Anyway, I was sent away with a future check up booked in.
But I took myself back to the clinic much sooner than that, horrendous headaches, area of vision loss seemed to be bigger, and it was when tested. Whatever the cause was active again, scaring increasing. So they decided to try Avastin, a course of 3 injections seems to be standard here. They were convinced after these all would be fine.
I don't know about anyone else, but I find the injections hard. Emotionally I struggle, I have always had very sensitive eyes. My eye often seems to get scratched by the speculum. And in answer to another's query I do get crusty eyes for a few days after, I have to do salt water eye washes to get my eyes open in the morning, alongside the antibiotic drops. As each injection has passed my eyes seem to be more light sensitive, I largely live behind dark glasses now, inside and out. It takes the best part of a week to be properly functioning again. I have found lots of extra sleep really helps speed the recovery.
I went back for my check up a couple of weeks ago, they were so sure it would all be fine, and in visual tests I do seem to have improved, but I have worked hard at learning to use my peripheral vision more. But on scanning the scar is still increasing in size, there is still activity. And to top it off on examining the other eye (I had complained of decreasing night vision and increased light sensitivity) I have some thickening of the retina, which is potentially the start in that eye...
They are totally bamboozled!
So 2 days ago I had yet another Avastin, this time my eye did not get scratched which is a relief at least, so recovery wise it is the best one yet.
Time will tell...
I now have appointments for each eye. The consultant simply told me that this condition can take over your life, relying on others to transport you, constantly going for either treatment or check ups. With a young family and previously being very independent it is hard to adjust to. I sit in the waiting rooms surrounded by elderly people, at least I brighten up their day, something more interesting to talk about.
My biggest fear had always been to lose my vision, I am just a very visual person. I feel sorry for my family, I have changed with this, we were always so active, but now I tend to hide indoors on sunny days.
It is hard for family and friends to understand, I know they do feel helpless, but it seems to be either pity (which I find quite depressing) or a sense of 'what on earth are you whinging about, it's not terminal' attitude - not terminal but life changing all the same.
I think the hardest thing to accept is the 'Idiopathic' part of the diagnosis. There must be a reason, they just don't now it yet! And once you are in that Idiopathic bucket there is very little interest in trying to ascertain a reason.
Interestingly, reading previous discussions, I strongly feel that my vision and severity of symptoms - general blurry ness of vision and headaches - does alter with my hormone cycle! And I am seeking referrals to see a gynaecologist to discuss and be tested.
I refuse to just give up and accept it, there must be a reason, I have always been of the mindset to treat the cause not the symptom. I have been contacting research centres in numerous countries, but ironically I am too young to be considered, you have to be at least 50.
There is a research programme about to start with the Oraya machine, which I believe is more accessible in other countries and is produced by an American company. It is a form of radiotherapy and initial trials have shown to considerably reduce or even stop the need for injections! How I wished I was fifty the day I got turned down for that study ;). It can be paid for privately but is very pricey and not a guarantee. This may be of help to some of you...
The British NHS is a bit behind the times but as I see most of you are in America you may find the work of a Dr Rosakis interesting. I have had internet discussions with him and he has done some interesting research, he is now looking at the use of gene therapy I believe. Bit far for me to travel ;)
Interestingly I was chatting with my father the other day, who has been battling with cancer for several years. His palliative treatment has been more successful than anticipated, thankfully, and he is enjoying a good quality of life at the moment. He openly said he'd rather have what he has than have a condition such as mine... It really did take me by surprise!!!
I wish everyone luck on their journey, thank you for being a much needed sounding board!
Ruth
CNV
Hi Ruth,
I totally relate to your story. I am 35 and was diagnosed with CNV in July and no one understands what I go through. The way you describe it is exactly what I feel like. The injections always ruin my entire week. Mine is also in my left eye, but has been ascribed to high myopia. Nonetheless, I think hormones have played a role, though no doctor seems to believe me. I have had all sorts of hormonal symptoms since my youngest stopped nursing about a year ago. This has changed my whole life. I am a lawyer and can no longer do my work. We were planning to have another child, but not sure now. I also have the light sensitivity -- anytime I'm exposed to changes in lighting, I get a shimmering aura in my eye. Yet, everyone says, "you look fine," which I find very irritating. They also always say, "well, you still have your other eye, so does it even matter?" Even my retinal specialists don't understand why it affects my life. When I told my old doctor that I was finding it difficult to do my work, he said, "like on the day of the injection?" and couldn't understand how it affects me any other day. My new doctor told me that my other eye is okay so it shouldn't affect me at all. I have had very mixed results with the injections. I got worse with the Avastin and they switched me to Eylea. I recovered nearly all my sight after a single injection and then 2 weeks later got to the point where I couldn't see even the big "E" on the eye chart. I got a little better and stabilized for a couple of months and then it got worse again. I have also been told I have myopic traction maculopathy, which is a separating of the retinal layers, and that there is not much to do for that, except a vitrectomy, which my doctor doesn't currently recommend. She thinks the injections have aggravated the maculopathy (which I have in both eyes). It is so frustrating, the uncertainty of it all and I can't find much information out there on CNV that's not related the age-related macular degeneration. I hope things get better for you!
andrea
CNV
Hi Andrea,
How have things been going with you since last year?
Thanks,
Alexa
CNV
Hi Alexa,
Wel, it's been quite a year. A few days after I originally posted on here, I got another opinion and found out I actually have a really rare form of posterior uveitis, called punctate inner choroidopathy (PIC). (I encourage anyone diagnosed with CNV to get an FFA and ICG test to rule out uveitis). It's an autoimmune disease in which the immune system attacks the back of the eye, causing cell death and vision loss. I have had CNV as a complication of the PIC. I have been on high dose steroids for nearly a year, just now getting down to a "safe" dose. They've put me on immune suppressants as well. I've gotten a number of injections for the fluid and just had a steroid implant put in my eye. It's been a year of unpleasant side effects and constant doctor appointments. Now I have high pressure from all the treatments and am on numerous glaucoma drops. I have recovered some vision, but still have a huge scar in the center of my left eye, making it hard to read or recognize faces out of that eye. Although considered a bilateral disease, so far my right eye is not affected, so I hope it will remain that way. I'm grateful to have found a doctor who knew how to diagnose me and who has helped me maintain the vision I do have. Do you have CNV?
Best wishes,
Andrea
CNV
Hi Andrea,
I actually do. It is occurring in my right eye. The RS told me it is due to severe high myopia, and the stretching of the eye. It just started last Jan as I was 22 weeks pregnant. At that time, the doctors thought it was a one time thing and an injection or 2 and that would be the end of it. However if had a reoccurrence on average every other month so about 6 shots total.
I am looking to speak to others who may have a similar diagnosis and experiences to see what else is out there. Can more be done?
It sounds like your condition is not related to myopia but another condition. What prompted the doctor to investigate further for a better answer?
Let me know if you prefer to speak offline.
Thanks,
Alexa
CNV
Hi Alexa,
Please feel free to email me at andreathoms at gmail dot com. I'm happy to chat. I know they can do photodynamic therapy if the injections are not working, but that can leave a scar in your retina, so it depends where the CNV is. Some doctors combine the two. There are also 3 different anti-VEGF drugs that I'm aware of that can be injected -- Avastin, Lucentis, and Eylea. So if one doesn't work for you, you can consider looking into the others. I had sought 3 other opinions (plus talked to partners of the various doctors I was seeing), and they all told me it was CNV due to myopia. I am highly myopic (-14.25 in both eyes). Finally I got to a doctor who said it might be inflammatory and he ran the ICG test that allowed him to see spots in my retina. Knowing what I know now, I would insist on getting that test done if you have not had one yet, just to rule out an inflammatory component. I think the other doctors saw my high myopia and jumped to conclusions. The condition I do have, PIC, presents in young, otherwise healthy, myopic females. There are many types of uveitis though. There is an article on Pubmed on Myopia and inflammation that I believe discussed that ICG testing should be mandatory in all cases of CNV associated with myopia. The treatment for uveitis can involve anti-inflammatory meds, like prednisone, and immune suppressants. The anti-VEGF injections can be used to address fluid/bleeding, which is a common complication of uveitis, but will not address any inflammation. Personally, I think mine had some sort of hormonal trigger, as it presented not long after I stopped nursing my second child. These eye conditions can be very lonely. I am more than happy to chat! Hope you are doing well.
Andrea
Hello again
HI Andrea, just in case they will allow us making contact, my e-mail is please please get in touch for support, I am around everyday anyway so would be nice to hear from you.
Good luck with your treatment, let me know how you get on
Ruth
x
Hi Andrea
I'm so pleased to hear from you, and that you found this site! I've no doubt like me you did countless searches trying to find information on CNV.
How are you doing??? Are you still having your injections? I believe I reacted badly to the Avastin but was not offered anything else. It has not resulted in regaining any sight as the scaring was already too bad but it does now seem to have stabilised and not got bigger so i am having a break from injections, phew. I hope you can get to that stage soon.
The old 'your other eye is fine so you'll have no problems' line is very frustrating isn't it! And as we 'look' okay people do forget, though i do have to wear dark glasses most days due to light sensitivity.
Having had it for just over a year now my other eye does seem to have adjusted but I still don't have the confidence to drive, I miss things. I have had ever increasing problems with migraines and visual disturbances/aura/balance, which they are now adamant are not eye related. So now I seem to be doing the rounds at the hospital. Gynae and Endo to check hormones but all seemed fine, now awaiting Oral surgery (impacted wisdom teeth) and ENT to check sinuses, and Neurology also..... I can't say my GP isn't trying to help me.
Are you managing to do some work Andrea? I have to say I have almost totally given up even trying to find a job. I would need so many sick days, I can't cope with any kind of strip lighting, can't drive, and these low suns in the sky over winter.... it really does get you down. I totally empathise!!!
Its a shame we don't live near by, I doubt, I'm on the Isle of Wight and am rather a novelty in the eye clinic, it would be nice to have some company that understands, it does get quite lonely a times.
Please stay in touch, I'm not sure we're allowed to exchange e-mails or anything on here, or i would give you mine for support.
If you do have any worries I'm happy to listen
Ruth x
CNV
Hi Ruth,
I'm sorry for all you've been dealing with! I totally relate and it is a very difficult condition. I have had very mixed results with the injections - sometimes improving and other times worsening. I've now tried Avastin, Eylea, and Lucentis. After my last injection I got incessant flashing in my eye, which was driving me crazy. I did have to leave my job over this -- my job required all day reading, which is not possible right now. I do hope I can get back to it one day.
I actually very recently got a different diagnosis (which is why I haven't gotten back to you sooner) - posterior uveitis/multifocal choroiditis. It's an inflammatory auto-immune condition of the eyes. I am being treated with steroids for now, which so far have helped reduce some of the inflammation and helped with the flashing/aura. I am told I will not recover most of the vision I've lost, however, which is pretty much all of my central vision in my left eye. I may have had a cnv as well, which is not uncommon as an effect of the uveitis. I have been to see four prior retinal specialists and this is the first one who has discovered the inflammatory condition. It is apparently often misdiagnosed. It might be something to look into if you are not getting relief from the injections and you don't know the cause of the CNV, especially if you are having other symptoms.
I'm sorry we don't live closer -- I am in the U.S. I am glad to hear that you have had some stabilization and have a break in the injections. They are the worst. I feel like you in that I am very sensitive about my eyes. I hope that you are able to find some more answers and relief!
Take care!
A comment on cnv
Hi Ruth, I have cnv in my left eye diagnosed in March 2014. First let me say I am understanding and empathize with your condition. You explained it well as it is life altering. You mentioned you were short-sighted. My cnv is because of my extreme myopia. Could that be case for you? I know they said idiopathic but as explained to me, the shape of the eyeball makes the retina thin stand that could result in what's called lacquer cracks I the Bruchs membrane. When this occurs, the vessels can begin to leak through these cracks and cause damage to the retina. The avastin is an anti-VEGF drug. People who have cnv their bodies produce a substance VEGF, that stimulates blood vessels in the back of the eye. Avastin is an attempt to kill off these vessels and stop the stimulation of new growth. I hope this helps. I'm only 8th injection and I wait for some good news. It is very hard to make plans to get far away because every 30 days I am in the Drs office. I will keep you in my prayers!
If you need support, please reach out to me and anyway I can help you cope as we are not alone.
Roseanne
CNV
Hello Roseanne,
Lovely to hear from you!
It is nice to know that someone really does understand, though I do have lovely friends and family they do find it hard to empathise.
They don't seem to think it could be due to Myopia, but who really knows, thankfully though it is in my central vision it is still only developed in the left eye, so my right eye is working hard to compensate. It's funny we both have it in our left eyes :)
I have had 5 Avastin injections now, but I have been really lucky to have a break from them over the Summer, no fresh leaks for a few months (fingers crossed) It is hard to plan life though isn't it, the monthly hospital trips to have the tests etc. and needing someone to drive you there and back.
I hope you do get some good news very soon!
Hears hoping Avastin continues to help, or maybe soon the Stem Cell research will provide a more permanent solution. There is some interesting developments for people with Diabetic Retinopathy, a special light emitting eye mask to sleep in, which prevents the development of CNV, maybe one day they will let us try it ;) We can but hope!
Take care Roseanne, if you ever need a sounding board, or having a bad day - i do find my fluctuates - please get in touch.
I really appreciate your reply
Ruth x
Cnv
Oh hi Ruth! Thanks for your response too. People don't understand what they don't see and feel. We see it and feel our symptoms everyday but it is invisible to others. But as sufferers of cnv, we know what each other struggles with in dealing with this disease. But I am hopefully as you are that maybe someday stem cells will help regenerate our retinas. It so curious that if you read all the blogs, the majority of cnv sufferers started in the left eye. Are we on to something here? Seems strange doesn't it?
Well, please keep me posted and I will do the same. So glad to make a new friend who truly understands. Thanks again! Roseanne
CNV
Hey Roseanne :)
It is nice to have someone to talk to who is actually experiencing the same, hearing from you has brightened my day!
My 7 year old daughter said to me the other day 'strangers have no idea about your eye as you look normal!' - (depending on your idea of normal hey!) apart from when I'm wearing my wrap round sunglasses on a cloudy day or inside public places ;) do you suffer with bad light sensitivity?
It is funny we are both left eye sufferers ;) very strange.... I am also convinced hormones play a big part, my eye definitely fluctuates with my cycle, but as there is really no research on younger/pre-menopausal women the Consultants (nice as they are) just don't buy it. Considering all the hormone receptors in the back of the eye is seems perfectly plausible to me, but hey, one day there will be a break through. I even went to the Gynaecologistm the GP thought is plausible, but to no joy. For a while I harassed all the research programmes going on for MD etc, trying to get on a trial, but kept getting turned down as I'm 'too young', haha never thought I'd be labeled as that!
When do you have your next check up? I'm back there on the 4th December. I am thankful to not have had injections for a few months but know there is a good chance I will have to at some stage, and the other eye may develop, the waiting and anticipation isn't easy huh? the thought of loosing central vision in both eyes is quite frightening! Does yours effect your central vision Roseanne? I will def ask my consultant about whether the fact I am long sighted has any effect, not had that mentioned to me as yet.
Do you have children Roseanne? I'm thankful mine are almost 8 and 11, it must be very difficult to cope with really young children. And do you work? When my CNV developed we had just relocated so I had no job, and I have to say having this has made finding one difficult, we are quite rural and I find it difficult to drive still, but sure it will improve as I adapt. It has also made it harder to try and make new friends, it really does knock your confidence doesn't it...
Yes please do keep in touch! Where do you actually live? I'm not sure they allow exchange of e-mails on here?
Let me know how you get on
Ruth x
Hi Ruth! So nice to hear
Hi Ruth! So nice to hear from you. Your daughter seems so in touch with the reality we face for such a young age. Its really wonderful. I have a 12 and 17 year old boys. The 17 year old is well....a handful! It does beat having very young children as I feel for those men and women. Very very tough. Yes I am light sensitive and affected by barometer. It is strange but true. I cant even open my eyes without sunglasses in bright sunlight. Also I believe hormones do play a role. I am currently not working as a result of this condition and my driving is limited. I am going 3rd week of November for yet another (9th one). I cant even go 5 weeks without a problem. The dr wants me to go every 30 days. That part is hard. I am allergic to dilation drops, the florescein stain they put on your eyes to check corneas, antibotic ointment, etc etc. This ultra sensitivity of my eyes to everything has made my eyes even more irritated and uncomfortable (as if the injection and condition itself is not enough) :(
If you would like to contact me via email, please feel free at mywhiteshep@comcast.net
I will definitely keep you posted on my next shot as I will be shortly before you and please let me know how your dr visit goes. I am thinking if you and praying for all of us that there would be a breakthrough in the reversing or prevention of cnv. Take care.
Roseanne
CNV - myopic degeneration
I am very thankful to have found this site. It is very difficult to find others with similar experiences. I was diagnosed with CNV in 2007 at the age of 46 that doctors indicated was the result of myopic degeneration, so my diagnosis is a bit different. I was extremely fortunate that one shot of Avastin stopped the leaking. I went five years without another occurance. However, in the past 1 1/2 years I was required to have a couple of Avastin shots. The most recent, this past week. This occurance is much more difficult to handle due the fact it is impacting my central vision vs, the side. But, reading these posts give me that glimmer of hope that all will be better and the shot will help again....just having a bad day and need support. Comments that may be of interest to others (1) I found that playing solitare with cards (not on the computer) seemed to help my eye/brain work together after the shot so I wasn't nauseated from seeing the distortions and in my case the other eye compensated quite well for the bad eye. (2) I always felt that my eye issues were related to hormonal changes in my body with the change of life so it was interesting to hear the comments on birth control. I actually met someone yesterday who experienced CNV (no known reason) after starting birth control to help level hormonal swings. (3) For those that are scared, it is natural but it is amazing the strength each and everyone of us has to make it through these difficult times.
Choridal NeoVascularization
I am 33 years old lady, I have been suffering with eye problem since last five years, but now this year, this month in october, i am diagnosed by my doctor with Choroidal NeoVascularization in both eyes few days back. it means that i have had deterioration since last five years. i have leakage in five different places in right eye, and leakage in three different places in left eye and in front of macula. i have had FFA, OCT, ICG tests few days back and now i'm going to have my first Avastin Injection on 31 October 2012 in left eye first, i'm just scared of the injection directly into the eye, Please tell me will this injection dissolve the vascularization? will i be able to see clearly? is it curable? What will be the side effect of this treatment ? Will i be able to see more clearly after this treatment?
i need your kind assistance n suggestions in this regard.
Thanks,
samia
CNV
Samia,
One more thing. The first step is stopping the leaks then after time your vision can improve. While the vessels are still leaking i feel there is still a lot of distortion and shifted of vision. The Avastin shots will not immediately improve your vision. However, if you can get the leaks to stop then your eye can gradually settle and in a lot of cases improve. In my case, it took awhile for scar tissue to form in the areas of the leak. I could almost see my vision shifting and changing on a daily bases. Then one day I noticed it was improving a bit. Then after a few more weeks I realized that I could actually read again with that eye!!! It tooks months for things to get better in my case. So don't lose hope.
Kim
Hello . i am saima . i want
Hello .
i am saima . i want to ask u sumthing abt CNV. i ve idiopathic CNV in my both eyes. my doctor didnt tell my clearly. i all searched on net. pls help me. i want to confirm it .it is a malignant disease. i had my first avastin shot in my left eye on 31st oct 2012. i want to know any precautions after injection coz my dr didnt inform me anything. i will ve my next avsatin shot in right eye on 9th nov. is this disease a kind of cancer.i'll b very thankful to u if u reply me.
thanks.
saima jamal.
CNV
Samia,
I am so sorry for what you are going through. I know how scary it is to be diagnosed with CNV.
The Avastin shots can potentially help stop the leaks in your eyes and they do not hurt. My opthalmologist did not freeze
my eye before the injection. He simply put a numbing drop in my eyes then had me look to one side while he quickly did the shot. I didn't feel any pain at
all. You sometimes feel a little pressure in your eye but nothing that should last. My opthalmologist explained to me that this was my best option and it worked for me. I had a series of these shots regularly for a year and a half. And has Marc explained, there is a very small risk of infection at the site of the injection as with any shot. I am glad you are starting treatment and I wish you the best. I would love to hear how you are doing in a few months. And If you have any other concerns or just need to talk feel free to email me ().
Kim
Hello . i am saima . i want
Hello .
i am saima . i want to ask u sumthing abt CNV. i ve idiopathic CNV in my both eyes. my doctor didnt tell my clearly. i all searched on net. pls help me. i want to confirm it .it is a malignant disease. i had my first avastin shot in my left eye on 31st oct 2012. i want to know any precautions after injection coz my dr didnt inform me anything. i will ve my next avsatin shot in right eye on 9th nov. is this disease a kind of cancer.i'll b very thankful to u if u reply me.
thanks.
saima jamal.
Hi Samia, I'm really sorry to
Hi Samia,
I'm really sorry to hear you have CNV in both eyes. The injection itself isn't painful. Your doctor will freeze your eyes so you will only feel some pressure, but not pain, when he inserts the needle. It only takes a few seconds.
As to whether it will help you or not, I can't say. You can see from some of the other posts on here that avastin has helped some people. For others, it helps for a while and then the leaking begins again. If it works, your vision will improve once the scars heal.
The only side effect I know of is that there is a very small risk of getting an eye infection. If there are any long-term risks about repeated injections, I haven't read about them. None of the doctors I have seen have said if there is a limit to how many injections a person can get.
If my other eye develops CNV, I will have no choice but to get either avastin or lucentis injections.
I chose a different path by opting not to continue with the avastin injections. To this day, I don't know if that was the right choice.
I wish you the best possible outcome with your injections.
Please keep me updated about your condition.
Thank you and good luck, Marc
Hello . i am saima . i want
Hello .
i am saima . i want to ask u sumthing abt CNV. i ve idiopathic CNV in my both eyes. my doctor didnt tell my clearly. i all searched on net. pls help me. i want to confirm it .it is a malignant disease. i had my first avastin shot in my left eye on 31st oct 2012. i want to know any precautions after injection coz my dr didnt inform me anything. i will ve my next avsatin shot in right eye on 9th nov.can u pls tell me how avsatin works? is this disease a kind of cancer.i'll b very thankful to u if u reply me.i ve severe headache. is this pain related to my eyes.
thanks.
saima jamal.
Thanks
thanks to guide me.saima.
CNV sufferer
Hi there,
I've just come across your site and found some of the info relevant.
I was diagnosed 10 or so years ago with CNV, I live in Nottingham, England and was put under Mr Pagliarini of the Queens Medical Centre.
When I was diagnosed I was given up to 3 years to lose my central field vision in my right eye, put on a high dose of steroids and had to attend regular hospital appointments. At the time there was no funding for treatment on the NHS, and treatment was way out of my reach.
Three days after I was put on steroids I stopped taking them, I hate taking tablets, and kept up with my appointments at the hospital. Over time they became less frequent.
The blurr on my right eye seemed to 'disappear' and my sight went back to 'normal' until a few years later when it came back!
I went to the same hospital and saw Prof. Murad, he booked me in for PDT and all went well.
I've not had any issues with my sight since my PDT, and I still have an open appointment to attend the hospital if I need to.
At the time of my diagnosis Mr Pagliarini was the only doctor in the country who knew anything about CNV! He'd been to America several times doing research etc, and I was one of three people in the UK who had this disease.
I still have my sight in my affected eye, I passed a DVLA field vision test with a top score and continue to live my life with my sight.
I don't know if I'm just very lucky or if I've defied medical science and 'cured' myself of this? Who knows!? I'm certainly not going to tempt fate or jinx myself but there is hope with this!
How I can still see is beyond me, so if you've been diagnosed with it, don't give up! Miracles do happen!
CNV
Tracie, thank you for posting your story of CNV. I too feel similarly fortunate with my now 4 year remission of symptoms. The Avastin shots worked very well for me and I too feel I defied the odds. I think it is very important to share our stories. When I was first living through this terrifying diagnosis I could find no positive or hopeful testimonies.
Kim
Newly diagnosed
I just found out that I have CVN. I received a shot of Avarstin. My eyes the following day are red, swollen and crusty! Did anyone experience this? It is terrifying when one first gets this diagnosis but after reading all the encouragement here from other CVN sufferers, I feel more hopeful. Thank you everyone and wish you all the best!!! And, yes I do believe in miracles as Tracie does. Can happen at any time!
Newly diagnosed
I just found out that I have CVN. I received a shot of Avarstin. My eyes the following day are red, swollen and crusty! Did anyone experience this? It is terrifying when one first gets this diagnosis but after reading all the encouragement here from other CVN sufferers, I feel more hopeful. Thank you everyone and wish you all the best!!! And, yes I do believe in miracles as Tracie does. Can happen at any time!
reply to Roseanne,
Hi Roseanne,
The initial diagnosis is scary as others here have stated.
How are your eyes now? Have you had another Avastin injection since the first shot?
I never had any crustiness following my 2 Avastin shots. The sclera (white part of the eye) was red around the point the needle was inserted. The red area was rather larger the day after the injection. It gradually disappeared over the course of 7-10 days. I never had any pain or swelling either. I agree with Kim that you should talk to your ophthalmologist about the crustiness.
It's just over four years now since I was diagnosed. My good eye is still fine although I do have some "floaters" in that eye, which can be annoying.
I am overdue for a checkup. As I stated previously, I opted not to continue with the Avastin injections because I was worried about the long-term effects. Two doctors also recommended not doing the shots because they said in many CNV patients there is a reoccurrence after the effects of the drug wear out. If I had to choose all over again and knowing what I know now, I'd do the shots. Maybe more shots would have made a difference, maybe not. But that was the best time to do them.
If I were to do Avastin or Lucentis injections now, the doctor said the improvement in my eye sight would be so minor that I wouldn't notice the difference due to the scars inside the eye.
But here I am still going about my normal life of helping raise my two wonderful children (my son is 5 and my daughter turns 3 next month) and working to support them. I'm a copy editor at a newspaper, so getting CNV really freaked me out initially.
Listening to the stories of others with the same disease has helped and I appreciate everyone who has taken the time to contribute to this page.
I'm also taking Kim's advice by trying to stay positive. I truly believe being positive can make a difference in our lives.
Some days when I wake up and can see, I smile and think "life is good, today will be wonderful because it's one more day that I can see."
Please keep us posted about your condition.
Kim, glad to hear you are doing well and there has been no reoccurrence of CNV.
As always, feel free to contact me personally at cram_man@yahoo.com.
Best to you all, Marc
CNV
Roseanne,
I am sure the red, swollen eye after the shot is normal but I would call your Ophthalmologist just in case. I always had redness in the area where the needle was inserted and my eyes always felt a bit sore, however I do not remember them being crusty.
Finding out you have CNV is really scary! I thought it was a sentence toward blindness but IT IS NOT!! I am now 4 or 5 years free from any recurrences and if there is hope for me there is hope for you=) As stated in previous posts, I believe my was set off by a hormonal birth control (IUD, Mirena). I got it removed within a month of my CNV diagnoses.
Hang in there and stay positive,
Kim
Thanks Kim for you support!
Thanks Kim for you support! I did think it meant blindness and sent me into a deep depression. I am glad that doesnt have to be our fate! Everyday there is more known and more treatments. Who knows our miracle can be just around the corner! Keep updating and I will too. Your time to respond is appreciated!
Thanks
Kim -
Thank you for posting this information and outcomes. I was just diagnosed yesterday with this condition and given my first Avastin injection. The bluriness I do have is not in the central part of my left eye, but towards the left part of my eye. Just enough to annoy me. I was told that this was caught early and the area was small. I can handle the blurriness but am so afraid it will get worse. I am glad to hear that Avastin helps/works. I am only 38 and am very nearsighted. I am glad to hear some promising news since everything I read is so overwhelming and can be upsetting.