Choroidal Neovascularization

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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

Comments

Serendip Visitor (B Marie)'s picture

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.

Serendip Visitor's picture

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

Kim's picture

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

Serendip Visitor's picture

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.

Kim's picture

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

Serendip Visitor's picture

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.

Serendip Visitor's picture

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

Serendip Visitor's picture

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.

Serendip Visitor's picture

Thanks

thanks to guide me.saima.

Serendip Visitor Tracie's picture

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!

Kim's picture

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

Roseanne's picture

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!

Roseanne's picture

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!

Serendip Visitor's picture

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

Roseanne's picture

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!

Carrie's picture

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.

Serendip Visitor Diane 's picture

eye

i had there first shot of avastan on march 7th it is now march 21 and i think my vision has been lost more ....can your vision be lost in such a shot time ..I feel like my eye is getting more blured..and distortion is worse i am so afraid ...should i contact my doctor ...i am really scared i am going blind in that eye .....can anyone help me

Marc Tessier's picture

dealing with CNV (part 3)

Those who have been newly diagnosed with CNV, I understand what you are going through. It's not easy. If there is anyone who wants to exchange emails in greater detail, I'd be happy to become CNV pen pals. My email is cram_man@yahoo.com.

Thanks, Marc

And thanks to everyone for posting their stories and information. Hopefully we can help each other in some small way.

Take care and best of luck with your treatments.

Marc Tessier's picture

dealing with CNV (part 2)

What I haven't found is any information that states what happens to my eye if I don't get the avastin shots or the PDT. Does anyone here know? In my case, I think it's genetic as since the diagnosis I found out there is a history of macular degeneration on both sides of my family ( a double whammy).
The thing that scares me most is whether my left eye stays healthy. I just turned 40 and have a 2-year-old son and a baby due in June. I really just want to be able continue working to support my family and see my kids grow. Is there any information out there about the percentage of people who get CNV in the other eye after it begins in one eye? As of a couple of days ago, my left eye was completely normal.
Also, no one here has mentioned nutrition. Vitamins A and C along with Lutein, Zeaxanthin and Zinc have all been linked to maintaining healthy eyes in studies. I would recommend everyone worried about their eyes to check into this. I take a Lutein supplement every day (10 grams) and have been eating more carrots (Vit A) and leafy green vegetables such as spinach (which are rich in Lutein). I also eat wolfberries, a small orange fruit that has Zeaxanthin and Lutein.

Kim's picture

CNV

Marc, I am curious to know if there have been any improvements with your right eye? Has the leaking stopped yet? Kim

Liz's picture

dealing with CNV

Hi Marc!
I have Myopic CNV and my retina specialist told me to come in at the first sign of distortion or blurriness. I use the Amsler grid every day. I have them in the car/fridge/office. He explained that if I don't get the shots, the bleeding would continue and my vision would be affected and permanent damage would occur. He did not state how long it would take but reading various online sources, it appears that the bleeding could increase and within 4-6 weeks I could have permanent vision loss. Not sure if that helps.

I have become such good friends with the staff at the Retina specialist that they are like family. I see them 1-2x a month. My CNV started in my left eye and stablized but 8 months later the Right eye started. Now I get to monitor both eyes and spend as much time with my family as possible.

I am concerned about long time usage of Avastin. I have been receiving multiple shots in both eyes over the last year. Each time, my vision improves but more leaks occur within 4-5 months after the shot. I don't know how long I can keep getting the shots before the tissues/eye is weakened and my vision is ultimately compromised. I am going to ask the doctor this next time I see him.

I also started drinking green juice each day, working out to relieve stress and taking an eye vitamin supplement. I can only hope this helps my eye heal after each injection.

Regarding your note:" I just turned 40 and have a 2-year-old son and a baby due in June. I really just want to be able continue working to support my family and see my kids grow. Is there any information out there about the percentage of people who get CNV in the other eye after it begins in one eye? As of a couple of days ago, my left eye was completely normal."

Congrats! Enjoy the time with the little ones. I am also concerned about this to as I am considering having another child.

Marc Tessier's picture

CNV update

Hi Liz,

Thanks for sharing your story.

Here's an update on my condition. I saw another specialist in April (it's now been 2 years since I was diagnosed with CNV in my right eye) and he said that Avastin or Lucentis will no longer help me as I have so much scarring in the retina and am in the late stages of CNV. He said there is no bleeding, but that I have cysts (small pockets of fluid) in the eye. The vision in the right eye is really bad, just have some clarity around the periphery. The doctor said the vision may get worse, but that I wouldn't notice it since it is already so bad. He said I would continue to have some clarity around the periphery. He also said that with each injection there is a risk, albeit very small, of an infection. If I were to get an eye infection, he said I would lose all vision in that eye. So armed with that information I have chosen not to get any further injections.

My left eye is still healthy (thankfully). He said given my relatively young age and that they don't know the cause of my CNV, there is a good chance my left eye will remain healthy. Still, he cautioned the potential for it to develop in my left eye is higher than normal.

Glad the Avastin shots are helping you. I would certainly ask about how long you can keep getting the shots. I haven't read any information about this.

Take care, Marc

Marc Tessier's picture

dealing with CNV

Hi Everyone,

Like many of the other posters here, I was also diagnosed with idiopathic CNV (my right eye) in April 2009. I had an avastin injection within 2 days of the diagnosis and another about 4 weeks later. About a week after the first injection I noticed an improvement in my vision, however it started to get worse about 6 weeks after the second injection. I was fearful of doing more injections since it is a relatively new treatment and no one knows if there will be any long-term side effects. In October 2009, I saw a different eye doctor who recommended not doing anything and seeing how it goes. I have also seen a tradition Chinese medicine doctor who has prescribed a big mix of herbs. This doctor treats it as though it's a circulation problem.
In February 2011, I saw my original doctor and he is now considering PDT (which based on everything I've read, I definitely don't want to do) as there is still some leaking and also scar tissue.

Tanis Fox's picture

CNV

I just received my third injection of avastin. I will have repeat scans next month. So far I haven't noticed any improvement. I am unsure whether to continue with injections or not. I am 53 years old. There is no known cause of why I developed CNV. Any advice would be appreciated. Thank you.

Serendip Visitor's picture

CNV

If your seeing a retinal opthalmology specialist then I would follow his/her advice. Since the only thing known to potentially dry up the leaking vessels is the shots, my doctor recommended for myself to keep up with them. It's worth the expense. My vision did not improve for a while after I first began treatment. It took time for the leaked blood and fluid to reabsorb and then even more time to form scar tissue. But eventually my vision began improving. Also, personally, I feel my CNV was related to a rise in my hormone levels (progestin) due to an IUD I had implanted a month or so before the problems began. So my advice would be to hang in there with the shots (of course with your Doctors approval and recommendation only)and also to look at your overall health for a possible answer. I'm sorry your going through this.

Kim

Johnathan's picture

CNV

My wife, who is 26, was diagnosed with Idiopathic CNV last December. She's had laser treatments to kill the bleeding vessels, only to have them grow back closer to her center of vision. She's also had 3 Avastin shots. The first one worked temporarily, but the last two have proven useless. Her vision is now 20/100 in her right eye and is getting worse. Worse news than that, she also has CNV in her left eye and is beginning to see a blind spot just like she did months ago in her right eye. The specialist we've seen has said he can do nothing else for her right eye, but he'll watch her left eye closely.

Anyone else know of any other treatments? We've contacted Will's Eye Institute in Philidelphia, Pennsylvania. Any other highly-renowned clinics? My email is . Please feel free to email if you'd like.

Serendip Visitor's picture

Idiopathic CNV

I was 33 when diagnosed with Idiopathic CNV. The physicians I saw in Salt Lake City were among the top in the county. Unfortunately, from what I have acertained from the opthalmolgy community and from my own research, currently the best form of treatment is the Avastin shot. From my own personal experience aprox. 1 month before the first bleeding vessel occured I had an IUD implanted. A birth control option that slowly released progestin into my system. There is no medical link between the two but I felt and still feel the timing of the two was too close to ignore. It may not have been the direct cause nor the cause at all but progestin can do a variety of things to a womens body including simply raising stress levels and cortisol which has been linked to CNV. I immediately had the implant removed and after one more smaller reacurrance and several Avastin shots I have been in remission for almost two years. I know my situation and experience is unique to me, however, I urge you and wife to look outside of the box for answers. Get a physical, check blood levels.. do whatever you can and just stay strong. I know how scary this can be so please feel free to email me if you have any more questions.

Kimberly

Serendip Visitor Diane 's picture

eye

i have just been told i have this amd i had the first shot of avastna......I feel my eye has gotten worse......I don't have a dark spot in my vision ye t...but letters are uneven..an distortion is worse . i am so afraid ...My left eye is pretty good and i am taking the vitamins as ordered can period of three weeks since the shot make your vision so much worse / m vision is also blured more in that eye ..Should I get in contact with my doctor? please help me diane

Marc Tessier's picture

CNV

Hi Diane,

Sorry to hear about your case. I know how you feel and it is scary.

As far as I know, the avastin shots take time to work. In my case, my vision didn't get worse after the shots but it did take time for an improvement. I think if you have any concerns you should definitely talk to your doctor.

For your information, it has been nearly 2 years since my initial CNV diagnosis in April 2009. My good eye is still fine and the interesting thing is that over time your brain disregards the distorted image from the bad eye. The distortions become less noticeable with your brain adjusting.

I haven't had any treatment on the eye with CNV since May 2009. I believe the leakage of blood continues. At my last OCT scan in September 2011, the doctor said it had stabilized, but that there was still bleeding. It's probably the same now, but I will likely go for another check in the next couple of weeks.

I'm not a doctor, so I won't pretend to tell you what is the best course of action in your case. If you are worried, talk to your doctor. If there is a problem, it's best to find out as soon as possible.

Strangely, I have found out my boss also has CNV. He has lived with it for 18 years. The avastin shots didn't exist when he was diagnosed so he never had any treatment. His good eye is still fine today..... so there is hope for us CNVers!

I wish you all the best.

You can e-mail me directly at if you want to stay in touch. I'd very much be interested in hearing how your treatment goes.

Thank you, Marc

michelle25's picture

idiopathic CNV

Hey Kimberly
I ended up on this website looking for information. I had been under a progestin only birth control pill for 8 month when I was diagnosed with CNV. I had 2 avastin shots and my eyesight improved a lot. I mentionned my birth control pill but the doctors assured that my eye condition was unrelated to it and so I did not switch/change pill. That was 5 months ago and now it seems that I am having a reacurrance...
I keep wondering if there might be a link between my birth control pill and my eye issues.
I completly understand what you went through.

Serendip Visitor's picture

Cnv

Michelle,

I am sorry I never responded to your comment last year on CNV and a possible link between Progestin. I am just now seeing it. I didn't receive a notice of your post. I am curious to know if you decided to change or stop your birth control with Progestin and if your condition has improved. Did you decide to go with Avastin shots? since my last post I have had no recurrence of my CNV in either eye and I am very hopeful it will not return. I refuse to take a chance with hormone related birth control pills however. It was too much of a coincidence that only a few months after started birth control (for the first time in my life) I had this condition. I was informed by my Opthalmolgist that there was a possible link to elevated cortisol levels ( the stress regulator put of by your body) and CNV. It could be that the Progestin, which is knows to raise stress and anxiety levels especially at first, could have raised these levels.

I wish the best for you,
Kim

Serendip Visitor's picture

Choroidal Osteoma

A Plea for help:
A 5 year old boy was recently diagnosed with Bilateral Choroidal Osteoma. He has lost vision in his right eye and is loosing vision in the left eye as well. His left eye's vision deretiorated from 20/30 two months ago to 20/50 in two months. Apparently there is no treatment for Choroidal Osteoma. We are under great supervision at a Los Angeles hospital, however, I feel the need for additional research.
Hope you can help:
1. Are you aware of treatment for Choroidal Osteoma, C.O.?
2. If not, are you aware of anyone who may know/has treated C.O. patients long term?
3. Is there a Retinal Experts network this questions can be posted to?

Any suggestions greatly appreciated.
Thank and Best Regards,

chris's picture

I suffered an eye injury from

I suffered an eye injury from a tennis ball & had a sub-retinal hemmorage that has now cleared. I am left with a permanent Choroid Rupture. (just missed the fovea) I was told by a retina specialist that i have a risk of developing choroidal neovascularization.

JK's picture

Treatments

I work for a retinal practice and a few updates. Photodynamic therapy was the first attempt at treatment for CNV (also referred to as SRNVM - Sub-Retinal NeoVascular Membrane). Most have abandoned that therapy (with a few exceptions) as the newer intra-ocular drugs have proven to be a safer & more effective therapy. Currently 3 main drugs are used - Macugen, Avastin, & Lucentis.
These drugs are in a class called VEGF(Vascular Endothelial Growth Factor) Inhibitors. VEGF is the substance that triggers new blood vessel growth.
Macugen, the first approved drug is used in what is known as 'classic' or predominately classic cases - most retina doctors I work with (out of 9 total) use this drug the least amount by a large margin. The other two drugs are Avastin and Lucentis which are both manufactured by the same company (Genentech). Initially developed to treat colon cancer it was discovered that the mechanism was very similar in the eye and trials began. Lucentis and avastin are nearly the same drug. The basic difference is that in Avastin , a tiny section of the molecule has been 'cleaved' leaving something very similar but not quite the same as Lucentis. The biggest difference is cost. Lucentis wholesales at about $2000 per dose (usualy a series of injections are given 4-6 weeks apart)while avastin is about $50 per dose. As a result Genentech have not done the required studies to get avastin approved. Many physicians find the results of the two to be equal and some even prefer avastin over lucentis. Genentech also tried to limit access to avastin but a minor physician revolt put a stop to that.
As a result of genentech not doing the research needed but Avastin seeming to do as good a job, for the first time ever in the United States, Medicare (the govt.) covers/pays for the unapproved drug Avastin. Independent studies are under way to compare the to head to head and preliminary results are very promising.
The goal with all the new drugs is to halt or regress new blood vessel growth. Most success rates I have seen are about 80%-90% effective. About 30%-40% of people experience an increase in vision but this is a secondary benefit.

Carrie's picture

Thanks JK for posting this.

Thanks JK for posting this. I am glad to see the good results with Avastin, I needed some good news. Do you know more about the lifting restrictions? I go to Curves and do not want to miss workouts but I might need to tone them down.

Anonymous's picture

My 9 year old daugther was

My 9 year old daugther was just diagnosed with idiopathic chorodial neovascularization. Can someone explain the idiopathic part?

Does anyone have any idea of possible causes in such a young patient?

Kimberly's picture

the last line I meant to type

the last line I meant to type 50/20

Kimberly's picture

chorodial neovascularization

Sorry your daughter and your family are going through this. I was diagnosed a few years ago with idiopathic cnv however I was 33 at the time. Idiopathic, as you've been told, simply means they have no idea what caused it. At the time I had blood tests and a complete physical- nothing was out of the ordinary. It could have possibly been caused by stress but they just do not know. But I am happy to say that it only reaccured once, so I had had two leaks total and then suddenly nothing. No leaks going on a year and half now with no reason to believe they will ever reaccure. Given my "young" age and that it was idiopathic turned out be a good thing. Basically, because they don't know what triggered it and that it is so unique- it can go away as mysteriously and as quickly as it came (unlike other types of cnv). So please have hope and I would be curious to find out how your daughters vision is doing. Mine is wonderful now. My affected eye went from 20/200 to 50/100 in the space of about 6 months. I can even read with that eye now. I had a hard time finding information when I was going through this and I just hope this helps.

Sincerly,
Kimberly

Debbie 's picture

Choroidal Neovascularization in 15 year old - daily headaches

My 15 year old daughter who had perfect vision has been diagnosed CNV. First her vision was distorted a bit. Then more vision loss and she sees the color red out of her left eye. Her vision in the left eye is 20/200. She had an injection to stop the leaky blood vessels in Nov 09. The injection did not improve her vision at all. It did slow reduce the fluid. She experiences daily headaches and now has leg pain. Her legs tingle and from time to time go numb. Especially in the morning. We've been working with a neurologist and retina doc. They've ruled out MS. All blood work has been fine no infection. She hasn't had any injury either.

My question to you is anyone out there experiencing pains and other symptoms rather than just vision loss?

Serendip Visitor's picture

Choroidal Neovascularization

I have had 3 injections of avastin so far.. they don't know what is causing this. First I had a swollen optic nerve then just swelling or Choroidal Neovascularization in a small area of my left eye. It has left me with a blurred out secion in my parriferal vision. The shots seem to help but only for a couple weeks then the swelling comes back. I too was ruled out for MS and have had many blood tests to rule out other diseases.. from Toxoplasmosis to Bartonella i.e cat scratch fever. Soon after they found the swelling my arms started burning as did my legs. they don't go numb they burn feel crawly like I have acid under my skin. Then when they told me the name of what I had I did more research. I am now going in for lung xrays and blood tests for Histoplasmosis. I own birds but you can get it from soil and it can cause Choroidal Neovascularization. I am hoping they figure this out.. I hate the eye loss and it scares me to death. The fatigue the burning limbs the vision loss... its all weird no one can figure it out.

Have you found out anything more?

senderella's picture

Neovascularization of the eye

Could it be Homozygous c disease?

Izzy's picture

CNV

My father, 85 years old, had CNV some 5 months ago, he had his 3 course eye injection treatment with Lucentis, he also had one laser session. However the CNV reappeared some 2 months after the course ended. Now he has had his 4th lucentis injection but at his age he finds the injection process difficult to bear. A local opthalmologist who examined him with a hand held auto keratometer informed us that lucentis is now obsolete treatment for CNV and stem cell transplanation is more current, more permanent and less invasive and painful. Has anyone heard of stem cell transplantation as treatmwent for CNV and any comments on the side effects and success rate?

Sue's picture

Lucentis- any advice about users who have had the drug?

I am having an injection of Lucentis on Friday April 24 2009 for the first time in a hospital in Kingston, Surrey, England... I am a 64 year old woman and it is my left eye that is affected; any advice on what to expect, or to do afterwards? It is the first of three.

Anonymous's picture

My daughter was diagnosis

My daughter was diagnosis with idiopathic CNV at 12 years old, she had laser surgery, Vitrectomy/membrane peel at Stanford in hopes of halting the progression which it seems to have done, her checkups were eventually prn, as she would see an opthmalogist regularly. No changes until just tonight she called from college and said she is noticing the the same symptoms in her "good" eye. So I am scheduling appointments now, any updates on effectiveness of injection treatment? anything specific I should inquire about that anyone know about, I would appreciate any advice, in the mean time I will be busy researching for any new answers.

Anonymous's picture

I also had the Avastin

I also had the Avastin injections thay did not improve my vision. However, I was told that my vision which is very poor had at least stabilized. This may be the case for your aunt. I am hoping my "good" eye will not be effected and am being closely monitored. Perhaps your aunt should get a second opinion. Good luck I know it can be very frustrating.

Chris's picture

Choroidal Neovascularization

My Aunt has received many injections and has had no improvement, she is 68 years old and was diagnoised with this condition in one eye, they have now told her that her only option is to remove the eye due to the blood vessels that continue to grow and they're concerned for her healthy eye. Is this true? Thank you, Chris

Jcode7's picture

Received Avastin

Hello,

I am a 30 year old male. I was diagnosed with idiopathic dry SRNVM (or CNV) two months ago and I find it very difficult to find information about this on the internet. This page is the best so far I've found.

Two months ago, I went to play badminton with people at my job. After an hour of intense physical activity I noticed the problem. I closed one eye and I noticed that on my left eye there was a small blurry/blind spot near the center of vision. It was so close to the center so it was very annoying.

The ophtalmologist explained to me I had new blood vessels growing near the macula and that they could take over the whole left eye within 6 weeks if not treated.

She injected me Avastin in my eye. She told me that this would stop the blood vessels from growing, that it was efficient 80% of the time. She also told me that my vision would not improve by more than 10%.

But surprisingly, during the next month, I noticed that my eye had fully recovered and this was confirmed by new retinal scans during my second visit at the clinic. So Avastin did the trick for me.

I read a post on some blogs and said to go easy on the physical activity. Some other people had new blood vessels that grew during or after intense physical activity.

Today, I noticed another blurry/blind spot had appeared on the other side of my macula, I am considering going back to the clinic for another Avastin shot.
Is there any better treatment than Avastin available? I am affraid that I lose my left eye vision. Thanks,

Anonymous's picture

CNV

I was just diagnosed a few days ago with CNV in one eye and will have an initial Lucentis injection next week. If the injection doesn't work, what's the next step ?

Anonymous's picture

CNV

I am a research coordinator for a retina doc and am currently involved in a study which is comparing Avastin and Lucentis in a head to head trial. It is called the CATT Study. Avastin (used off label for the treatment of CNV) and Lucentis which is and FDA approved drug are the two most effective treatments available at this point (for most cases of CNV). The most effective treatment schedule is still unkown, most ophthalmologist have started treating PRN but the research data on Lucentis was obtained by giving monthly injections. For patients with newly diagnosed CNV, I suggest you read up on both drugs and the different treatment plans. The CATT Study is a two year trial so we hope to have more information about these two drugs in the near future.

Sue's picture

Lucentis

I am about to have my first Lecentis injection on Friday April 24 2009 and wondered if you had found more information on the CATT study. I have CNV in my left eye onlyand I am 64, a woman, and have had previous trouble with that eye, ie partical retina detachment and cataract... thanks for any further comments.

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