At my first appoinment, I went through several different examinations, from pressure tests to having photos taken. I also had the photos taken where they give you a Fluorescein injection and time to see how long before the dye starts showing up in the photos, all the while snapping shots of your retina. The woman taking the pictures was a bit abrupt with me, but I suppose its hard to get people to look at the right spot all day, especially when they can't see it too well. Oh, and the blinking. That drives them crazy.
After seeing nurses and undergrads, the doctor finally came in to talk to me. He was nice enough, he explained to me what the disease was and how he wanted to proceed. He told me that Avastin was a newer, experimental drug that had shown lots of positive results when used to treat macular degeneration and other cases of CNV. He told me that this was not a cure, and that it would not make it go away. The Avastin would simply stop the veins from growing temporarily, but it would wear off in a matter of weeks and I would have to undergo another injection, and repeat process.
After I finally agreed to say yes, signed the release forms, and as soon as they left the room to gather the matierials needed, all of the weight from what I had just learned hit me like a ton of bricks. I learned that my life was going to change forever, that I was going to eventually loose my sight, I just broke. I cried so hard that day, big messy sobs that wrench you deep in your belly. I cried for my future, I cried for my loss, I cried because my life was going to revolve around my disease now.
The doctors gave me plenty of time to pull myself back together, granted it was shaky together, but together none the less. The nurse explained how the procedure was going to go. My first shot went like this: The nurse administered some numbing drops over the course of 10 minutes, and also used iodine to clean my lids, lashes, and the eye itself. This part stung like no other, because the numbing drops had very little against the burn or the cleaning solution. After it was "cleaned", the doctor came in and used an eyelid speculum to hold my eyelids back. I was given a smaller injection of numbing solution to numb the area to be injected. I was told to look to the right, towads my shoulder so that the doctor could inject the avastin in a part of the eye where there is a specific area where they can inject without causing harm to the eye. At this point I froze, completely like a statue. I held my breathe because there was no way I wanted to have any movement while a needle was in my eye. Despite the numbing and the pre shot, it still hurt. I could see the medicine as it was being injected into my eye, and they swirls of it floating past. It is truly a weird thing that nothing is like. This went relatively quick, seconds really, but it seemed like it took forever.
I was done, they took out the speculum, gave me antibiotic drops to use every 4 hours for 4 days, and I was told that there was a risk for infection and so on and so forth. At the point, all I wanted to do was wake up from this nightmare. I went home and just slept for a few hours after that.
Thursday, August 30, 2012
Monday, August 27, 2012
I was diagnosed with CNV at 19
This is my blog, to let people know that eye problems are not just age related. Especially huge ones, like Choroidal Neovascularization. I am near sighted, and have been for most of my life. I got glasses when I was in the 4th grade, and it was then that doctors started taking pictures of my retinas, because they noticed there was something... different... about them. I was told that i had "tigroid retina"
Definition? Well, In a tigroid fundus there are lesser amounts of pigment in the retinal pigment epithelium, allowing streaks of underlying normal choroidal pigmentation to become visible and give the characteristic appearance
Now, I was little and hated all the doctors appointments, and especially the machine that puffed air into your eyes to check the pressure. Oh man, did I loathe that one! There was one visit where the nurse yelled at me to sit still and stop crying... which of course, that made me cry more. My mother took me home, but the doctor and nurse told her that it was inevitable that I would probably go blind some day. Yeah, that stuck with me my whole life and terrified me. We didn't go back there either.
We didn't know that my near sited state would be any different than my other family members, and the tigroid didn't really give the doctors whom we spoke with any real indication that this was my future. I never really had any issues, and always had new glasses every year. Saw lots of doctors and not one of them said anything else about it. None. My mother always made sure we went in yearly no matter how broke we were, just in case... but when no one sees anything wrong, you tend to forget the looming statements of years past. Kind of, anyways.
I remember it was the beginning of Christmas break, and I was home from college. This was my second year and I was back in my room at my mother house. Now, before we go any further, let me just add that my sister has a migraine condition, so I am well aware of the signs of all kinds when it comes to migraines. When I saw the "spots" of distortion ( like television snow, just in one area) I thought that I might be coming down with a migraine. But after a few days of these spots lingering and no other signs, I let my mother know.
We went to see the optitrician that had recently gotten me set up with my handy dandy contacts, and she promptly asked me if i had been staring into the sun. I told her no, because everyone knows you aren't supposed to do that! Then she asked me if I had been shining a laser into my eye. Once again, I said no. She looked at me, then she wrote down the number to the retinal specialists at Texas Tech, and told me to make an appointment with them. We called them immediately, but for some reason, even though we expressed how urgent it was that we saw a doctor, they wouldn't set up an appointment for at least 5 weeks. I strongly believe that this was negligent on their part, but that has come and gone, and it has been years.
By the time my appointment had came, the spot had grown in size and I was terrified, because I had no idea what was going on with my sight.
-Sharon
Definition? Well, In a tigroid fundus there are lesser amounts of pigment in the retinal pigment epithelium, allowing streaks of underlying normal choroidal pigmentation to become visible and give the characteristic appearance
Now, I was little and hated all the doctors appointments, and especially the machine that puffed air into your eyes to check the pressure. Oh man, did I loathe that one! There was one visit where the nurse yelled at me to sit still and stop crying... which of course, that made me cry more. My mother took me home, but the doctor and nurse told her that it was inevitable that I would probably go blind some day. Yeah, that stuck with me my whole life and terrified me. We didn't go back there either.
We didn't know that my near sited state would be any different than my other family members, and the tigroid didn't really give the doctors whom we spoke with any real indication that this was my future. I never really had any issues, and always had new glasses every year. Saw lots of doctors and not one of them said anything else about it. None. My mother always made sure we went in yearly no matter how broke we were, just in case... but when no one sees anything wrong, you tend to forget the looming statements of years past. Kind of, anyways.
I remember it was the beginning of Christmas break, and I was home from college. This was my second year and I was back in my room at my mother house. Now, before we go any further, let me just add that my sister has a migraine condition, so I am well aware of the signs of all kinds when it comes to migraines. When I saw the "spots" of distortion ( like television snow, just in one area) I thought that I might be coming down with a migraine. But after a few days of these spots lingering and no other signs, I let my mother know.
We went to see the optitrician that had recently gotten me set up with my handy dandy contacts, and she promptly asked me if i had been staring into the sun. I told her no, because everyone knows you aren't supposed to do that! Then she asked me if I had been shining a laser into my eye. Once again, I said no. She looked at me, then she wrote down the number to the retinal specialists at Texas Tech, and told me to make an appointment with them. We called them immediately, but for some reason, even though we expressed how urgent it was that we saw a doctor, they wouldn't set up an appointment for at least 5 weeks. I strongly believe that this was negligent on their part, but that has come and gone, and it has been years.
By the time my appointment had came, the spot had grown in size and I was terrified, because I had no idea what was going on with my sight.
-Sharon
You have Choroidal Neovascularization? What's that??
This is something that has been part of my life since I was 19. This was something that I have had in the cards for my whole life, but I had no idea. Genetics are a bitch sometimes, and it just so happened that my parents took a dip in the gene pool for me, and this just happened to be one of those things that got put in the mix
.
What is Chorodial Neovascularization? Well, when I was diagnosed, I was told I have Chorodial Neovascular degeneration - however I believe that they are the same thing. It's only more recently in the last couple of years that there is more on the subject when I google it.
Here is the break down for those who don't know. This is from Wikipedia but since it can change, I'll just post it on here.
Choroidal neovascularization (CNV) is the creation of new blood vessels in the choroid layer of the eye. This is a common symptom of the degenerative maculopathy wet AMD (age-related macular degeneration).[1]
Causes
CNV can occur rapidly in individuals with defects in Bruch's membrane, the innermost layer of the choroid. It is also associated with excessive amounts of Vascular endothelial growth factor (VEGF). As well as in wet AMD, CNV can also occur frequently with the rare genetic disease pseudoxanthoma elasticum and rarely with the more common optic disc drusen. CNV has also been associated with extreme myopia or malignant myopic degeneration, where in choroidal neovascularization occurs primarily in the presence of cracks within the retinal (specifically) macular tissue known as lacquer cracks. (ie. The retinal wall is too thin and veins are for some reason trying to grow through, causing tears in the retina. These blood vessels are too weak to support themselves so they leak, causing the retina to separate from the back of the eye. The combination of leaking and seperation is causing vision loss. )
Symptoms
CNV can create a sudden deterioration of central vision, noticeable within a few weeks. Other symptoms which can occur include metamorphopsia, and colour disturbances. Hemorrhaging of the new blood vessels can accelerate the onset of symptoms of CNV.
(Mine were spots of grey vision that looked like the spots when you get migrains. Distorted and patchy, and with flashing. The flashing looked similar to the "snow" you get on television when the station is out.)( When looking an an amsler grid. the lines would be extremely distorted and wavy)
CNV can be detected by measuring the Preferential Hyperacuity Perimeter.[2] On the basis of fluorescein angiography, CNV may be described as classic or occult. ( I actually developed an allergy to the flourescein dye, and no longer can use it. It made me so dizzy I passed out, and possibly stopped breathing for a moment. All I remember was waking up surrounded by doctors and nurses, while laying on the floor. After that day, its all laser photos for me)
Treatment
Standard of care in retinology today are intravitreal injections of anti-VEGF drugs to control neovascularization and reduce the area of fluid below the retinal pigment epithelium. These drugs are commonly known as Avastin and Lucentis, and although their effectiveness has been shown to significantly improve visual prognosis with CNV, the recurrence rate for these neovascular areas remains high. Individuals with CNV should be aware that they are at a much greater risk (25%) of developing CNV in fellow eye, this according to the American Academy of Ophthalmology and further supported by clinical reports. ( I recieved and still receive shots of Avastan in my active eye, and have actually lost count of how many shots I received in total. It is truly an unnerving process, one you cant really imagine until you had it. I will go into detail about this in another point, I have CND in both eyes, one is scarred over but we keep a close "eye" on it, just in case. Other suggested treatments had no affect and were not repeated)
In 'wet' (also known as 'neovascular') Age-Related Macular Degeneration, CNV is treated with photodynamic therapy coupled with a photosensitive drug such as verteporfin. The drug is given intravenously. It is then activated in the eye by a laser light. The drug destroys the new blood vessels, and prevents any new vessels forming by forming thrombi.[3]
Anti-VEGF drugs, such as pegaptanib and ranibizumab, are also used to treat CNV. Anti-VEGFs bind to and inactivate Vascular endothelial growth factor.[4]ci
Thanks for reading
- Sharon
.
What is Chorodial Neovascularization? Well, when I was diagnosed, I was told I have Chorodial Neovascular degeneration - however I believe that they are the same thing. It's only more recently in the last couple of years that there is more on the subject when I google it.
Here is the break down for those who don't know. This is from Wikipedia but since it can change, I'll just post it on here.
Choroidal neovascularization (CNV) is the creation of new blood vessels in the choroid layer of the eye. This is a common symptom of the degenerative maculopathy wet AMD (age-related macular degeneration).[1]
Causes
CNV can occur rapidly in individuals with defects in Bruch's membrane, the innermost layer of the choroid. It is also associated with excessive amounts of Vascular endothelial growth factor (VEGF). As well as in wet AMD, CNV can also occur frequently with the rare genetic disease pseudoxanthoma elasticum and rarely with the more common optic disc drusen. CNV has also been associated with extreme myopia or malignant myopic degeneration, where in choroidal neovascularization occurs primarily in the presence of cracks within the retinal (specifically) macular tissue known as lacquer cracks. (ie. The retinal wall is too thin and veins are for some reason trying to grow through, causing tears in the retina. These blood vessels are too weak to support themselves so they leak, causing the retina to separate from the back of the eye. The combination of leaking and seperation is causing vision loss. )
Symptoms
CNV can create a sudden deterioration of central vision, noticeable within a few weeks. Other symptoms which can occur include metamorphopsia, and colour disturbances. Hemorrhaging of the new blood vessels can accelerate the onset of symptoms of CNV.
(Mine were spots of grey vision that looked like the spots when you get migrains. Distorted and patchy, and with flashing. The flashing looked similar to the "snow" you get on television when the station is out.)( When looking an an amsler grid. the lines would be extremely distorted and wavy)
CNV can be detected by measuring the Preferential Hyperacuity Perimeter.[2] On the basis of fluorescein angiography, CNV may be described as classic or occult. ( I actually developed an allergy to the flourescein dye, and no longer can use it. It made me so dizzy I passed out, and possibly stopped breathing for a moment. All I remember was waking up surrounded by doctors and nurses, while laying on the floor. After that day, its all laser photos for me)
Treatment
Standard of care in retinology today are intravitreal injections of anti-VEGF drugs to control neovascularization and reduce the area of fluid below the retinal pigment epithelium. These drugs are commonly known as Avastin and Lucentis, and although their effectiveness has been shown to significantly improve visual prognosis with CNV, the recurrence rate for these neovascular areas remains high. Individuals with CNV should be aware that they are at a much greater risk (25%) of developing CNV in fellow eye, this according to the American Academy of Ophthalmology and further supported by clinical reports. ( I recieved and still receive shots of Avastan in my active eye, and have actually lost count of how many shots I received in total. It is truly an unnerving process, one you cant really imagine until you had it. I will go into detail about this in another point, I have CND in both eyes, one is scarred over but we keep a close "eye" on it, just in case. Other suggested treatments had no affect and were not repeated)
In 'wet' (also known as 'neovascular') Age-Related Macular Degeneration, CNV is treated with photodynamic therapy coupled with a photosensitive drug such as verteporfin. The drug is given intravenously. It is then activated in the eye by a laser light. The drug destroys the new blood vessels, and prevents any new vessels forming by forming thrombi.[3]
Anti-VEGF drugs, such as pegaptanib and ranibizumab, are also used to treat CNV. Anti-VEGFs bind to and inactivate Vascular endothelial growth factor.[4]ci
Thanks for reading
- Sharon
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