My Vision Stats

I just wanted to document my exact eye conditions to see if anyone else out there had a similar condition.

I have congenital horizontal nystagmus and extremely high myopia. My right eye refraction is -21.5 – 6.0 x 15 and my left eye is -18.5 – 6.0 x 180. I had approximately 3/60 acuity prior to developing a Foster Fuch’s spot on the right side with central subfoveal haemorrhage in July 2002.

Is there anyone else out there who has a similar condition to me? Be interested to hear from you.

:)

No New Bleeds

I’ve been meaning to post here for a while now and finally got around to it.

My eyes have been stable for the past 20 months which is great news. I visited my RS a few weeks ago and he said to see him again in 2 years.

Thanks to everyone who has left comments and shared your stories. I will keep this blog updated from time to time.

Another bleed...

Hello everybody on earth!

Over the weekend I had my suspicions that my eye was getting worse, then late on Sunday night I confirmed my worse fears! My right eye has leaked fluid again, in the same place as it leaked earlier in the year.

As per usual, I made an emergency appointment with my RS, he saw me that afternoon and couldn’t see any fluid, but we made a clinical decision to have another shot of Avastin as he trusts my judgment. The fact that I have a nystigmatism makes it harder for doctors to diagnose neovasculisation as the eye is constantly moveing from side to side when they try to look into it.

Anyway, the next day at 11am I had the shot. As usual I’m having to wait 2 days before I can put my contact lenses back in, but that doesn’t bother me. Just waiting to see how well this gets cleared up, I really hope it works again……… I really dislike going through all this!

Saturday, 4th August, 2007

It's been 11 days since my Avastin, there has been a lot of improvements, the whole liquidy blurryness has mostly gone, i'm left with a blind spot area though but it's not as frustrating as when it first happened. Very happy with results, Avastin does seem to work well with Myopic Macular Degeneration. Just hope my eyes stay stable for 5 years or so now!

Foundation Fighting Blindness

Driving research to save and restore sight, the Foundation Fighting Blindness (FFB) is a non profit organisation and has an excellent website for people who suffer from or know people who suffer from visual impairment or complete blindness. You can find their website at the following address: http://www.blindness.org/

The FFB needs donations in order to continue to provide funding for important research, the more funding they get, the more research they can fund which means more clinical trials and eventually, better treatments or even cures for the future.

If anyone wants to donate money to an extremely wonderful cause, please consider donating to the FFB. Any amount will help, no matter how small.

Let us continue the research and find some cures for future generations.

To make a donation, visit this website: http://www.blindness.org/donate/default.asp

Effectiveness of Avastin in Myopic Macular Degeneration

As some of you may already know, I have been treated with Avastin for Myopic Macular Degeneration.

The interesting thing to note here is that unlike Age Related MD where an average of three shots is required to dry up the eye, usually only one shot is needed to have the same effect for patients with Myopic Macular Degeneration. My RS told me this was because the patients are younger and the causes are different. (stretching of the eye rather then old age)

Avastin does its job really well, drying up all the blood before it has a chance to scar. In my case, all the blood was dried up and most of the blind spot had disappeared, but some still remained. So why would I still experience a blindspot if the eye was no longer wet? Well when the eye bleeds, it lifts the outer layer of the eye up slightly, the Avastin then enters the eye and clears away the leakage, however the outer layer that was lifted up due to the leak, doesn’t fully flatten down again, thus causing a slight blind spot.

This may not occur in all patients, some may experience their normal eyesight again after treatment, but the point to raise here is that the Avastin does what its supposed to do and dries up the eye.

Please remember I’m only a patient and this information has just been passed onto me by my RS so may not be 100% accurate, but I just like to let people know what I’ve been told and what has happened to me in case there are others out there about to have this treatment and want more information on it.

Living with High Myopia and Myopic Degeneration

I can’t find anyone out there who seems to be experiencing the same vision problems that I’m going through. I have high myopia which had lead to Macular Degeneration and I’m 23 years old.

All the support groups out there are designed for older people who suffer from the more common, age-related kind. In all my years of searching for others like myself to talk to, I have never found anyone.

For me, being shortsighted was annoying because I always had to get up close to read things. Macular Degeneration is just plain horrible because you can’t read things full stop.

I hate not knowing what’s going to happen next, I hate waking up every morning to check and see if I’ve lost anymore vision and I hate that sick feeling I experience when I realise I’ve lost more vision yet again.

All my friends have perfect vision, I’ve always gone through the mainstream schooling system and been brought up like any other child and I’m thankful for that. Out of all my friends and family there is hardly anyone that fully understands what I have to go through. The thing about extreme shortsightedness and macular degeneration is that people can’t tell you have a problem just by looking at you; it’s up to you to tell them.

In most cases I don’t tell the people that I have vision problems. I’m embarrassed of my problem, I don’t like to call it a disability, I don’t like to be treated any different and I don’t want people being nice, polite or especially kind to me because of my problem. I just like to be treated normal like anyone else; this is why I tend to not let people know. The downside to this is that obviously sometimes I’ll make myself look stupid because I wont be able to read that small print or I might completely ignore someone that waves to me across the room, however even if I did tell people, they may not care or chances are, they wouldn’t understand.

David from my MD emailing support group wrote the following in an email to everyone, it illustrates my points perfectly and is so true.

“It takes a person with plenty of wisdom, and understanding, who does not have vision loss, to fully empathize with someone who does have significant vision loss. It is "an invisible disease" - as others have said. When we see Michael J. Fox on TV, doing a spot to support research for Parkinsons Disease, his condition is very obvious and dramatic to behold. His affliction causes very easy-to-see abnormal motions, so it's very easy (and rightly so) to sympathize with him. Christopher Reeves, in a wheelchair, similiar
idea.”


Not being able to drive a car does suck, but to be honest, not driving a car is the very least of my worries, I just want to be able to maintain a stable amount of vision to go through life.

I hate not knowing what’s next! I know it could be worse, I know I should be thankful I don’t have a terminal illness and I am, but my vision is so important to me and it’s just so scary.

I wish we had a cure or at least confirmation that there will be a cure in ten years, that would make my life so much easier to deal with if I knew there would be a cure in 10 years, but that fact is, I don’t and no one does.

I will never admit defeat to my vision and maybe that’s a bad thing, but for me, there isn’t any other way.

My Avastin Experience (Part 2)

Unfortunately, 5 years after my first bleed in my right eye, it occurred again.

As per usual, I made an emergency appointment to see my RS and he confirmed what I already knew.

One day later, I had a shot of Avastin (this was my first ever shot in my right eye).

The operation went really well and I was able to wear my contact lenses two days after.

I begun to notice some improvements about a week after surgery. It's now been about 6 weeks since the surgery and my RS says the eye is completely dry.... "as dry as a rock" as he put it. There still is a blind spot but less then it was.

My Avastin Experience

Hey everyone, this entry is all about my experience using the drug Avastin to treat Macular Degeneration. I wrote this so other people who are about to have the treatment or want to know more about it, can follow my journey and get the information they require regarding this promising new treatment for MD.

Four years ago I was diagnosed with Macular Degeneration (Myopic) in my right eye, back then there wasn’t much at all that doctors could do to treat the disease, all they could really do is slow down the progression of the disease. Eventually the leakage scared over and caused permanent central vision loss in my right eye.

One month ago I developed the same condition in my left eye, so I was unable to read because all my central vision in both eyes had now gone. I went on a new drug called Avastin; which is basically the same as Lucentis, both of which are made by Genentech.

Having the Avastin surgery was quick and painless; I was only on the operating table for all of 1 minute. After the surgery they put a patch over your eye which you can take off 2 hours later. I had to return to the doctor the next day so he could check my eye in case of infection, but all was good.

I didn’t notice any difference for about a week and then my eye slowly started getting better. It got to the stage where I could read the computer screen again.

It’s now been about a month since my first shot of Avastin and I’m due back to see my doctor tomorrow (August 22, 2006). My eye hasn’t completely cleared up yet but I would say it has gotten 60% better due to the first Avastin treatment. I’m expecting I’ll have to have another shot in a few days but I will see what the doctor says, he’s optimistic it will fully clear up. I’ll write again after my visit tomorrow.

Tuesday, August 22, 2006

Well today my doctor looked in my eye and couldn't actually see any leakage or fluid. Last time I saw him (three weeks ago) he could see the leakage, but now he can’t, so I guess that is good. Just because he can’t see it, doesn’t mean it’s not still there though, which is the case because I can still see a blob. He told me to leave it two more weeks and if it hasn’t cleared up fully by then, he’ll give me another shot.

I’ll post another update in 2 weeks time, hopefully I wont need another shot and hopefully it will have gone away completely.

Tuesday, September 5, 2006

Went back today to see my doctor again, he asked me how much improvement I had noticed since the first shot of Avastin, I said about 65% improvement. He looked in my eye and said it looked a lot cleaner then it was when he first looked at before the treatment.

He said the blind spot was small and it would be very unlikely to scar over at this point, he also added that with time he would assume it would dissolve away by itself, however we both decided to have another shot of Avastin just to get the job done quicker.

So anyway I’m booked in for surgery on Thursday 7th September at 4:30, I’ll write another post a day or two after my second shot.

Saturday, September 9, 2006

Its been about 40 hours since my second Avastin shot and I’ve just been allowed to put my contact lenses back in! The surgery went really good again, not painful at all. They start off with giving you some Panadole and then an eye drop to numb the eye. Then they put this thick gel stuff into your eye which also acts as a stronger local anesthetic to the drops, that same gel is applied again five minutes later and then the nurse leads you into the operating room.

I lay down on a bed, the doctor asked how my day had been and applied this disinfectant stuff on the skin around my eye and he then used some sort of device to keep the eye open. This didn’t hurt at all because the eye was numb from the local anesthetic. He then quickly inserted the needle and out came the Avastin, I could see if swirl around in my eye and then it dissolves.

The nurse then put an eye patch over my eye and I was told to leave the patch on for two hours. They also gave me some eye drops and I was told to place 1 or 2 drops in my eye every 4 hours for about a week, this just stops infection.

It wasn’t so scary this time around as I knew what I was in for and my sight had improved so much since last time I was there. My eye feels a tiny bit sore at the moment and there is a tiny red dot on the white of my eye where the needle was inserted, but this will go away within the next few days.

Too early to comment on improvements at this stage but I’ll post more in a week with more information on that.

If anyone who is reading this is about to have this surgery, don’t worry about it, it’s going to make your sight so much better and if you don’t have insurance like me, it’s the best investment you could ever make.

Monday, October 30, 2006

It's been almost two months since my second shot of Avastin. Sadly, the second shot did not improve things over the first shot. My doctor says my eye looks clear and is surprised I can still see a blind spot to the side, he was disapointed that it hadn't completely gone away. He says it could still fade away over time and that no further treatments are needed. I have an appointment to see him in late December.

All up, Avastin has been amazing. It has cleared up about 75% to 80% of my blind spot. It has prevented it moving closer to my central vision and above all, has enabled me to read with my left eye again. I'm still able to keep going, as long as I can get up close, I can still do everything.

Will post more after my next appointment.

Tuesday, January 23, 2007

Well its been 6 months since my left eye was blinded and if it wasn't for Avastin, my life would have changed 360 degrees. My blind spot is not in my central vision, there is still a tiny blind spot to the side but my RS says my eye looks cmpletely clear and he thinks some photorecepter cells got moved around a bit and should settle down even still.

This is the end of my Avastin Experience for now. I will write more on this topic only if needed, otherwsie thanks for reading and if you're about to have this treatment, goodluck and be strong, you have something no one had 2 years ago, a treatment that will most likely save your sight.