Day one:

Treatment day. Arrived hospital at 8 am. Dripped liquid into vein at arm using plastic tube for about an hour. Meanwhile dilated pupil and add anaesthetic drops to numb both eyes.( I was told that such drops slow down the shrinking of my pupil so remain wider for longer time) Injected Visudyne via same plastic tube took about 10 minutes. Applied cool laser for about 60 seconds to finish whole treatment. No pain. Hardly felt anything. Sight all red in first 2 minutes after the treatment then gradually resume normal. Rest in bed for 2 hours and left for home. The treated eye very blurry

Day 2:

Pupil on treated eye still wider than usual and sight blurry. More burden to good eye as I continued to read and type. Feel dizzy and overall feeling not good.

Day 3: similar situation

Day 4 (this morning):

Pupil of treated eye seems to have close a little bit but still wider. Side vision not as blurry. Old black cloud like in center vision still exist although appear thinner and lighter and can see big objects through the cloud. Actually already beginning to see through cloud before the treatment so reckon not credit of treatment. Assume by now blood being reabsorbed while scar developed and fluid continued to flow and cover the macula therefore still blocking sight but become lighter and thinner. Hope treatment will now stop the flow of fluid to damage the macula any further.

David Cheung, 3rd report:

This is now the 17th day since I had Pdt treatment. As reported later the black cloud blocking my central vision were getting lighter and thinner. Today that kind of improvement seems much more noticeable and I am beginning to be able to see medium to bigger size letters in a newspaper with the eye that had pdt treatment. However, what I see still a little bit twisted in shape and colors are a little bit lighter when comparing sights with my still good right eye. For example the red traffic light will look like pink and the green is less visible or more like apple green instead of dark to medium green.

My guess is that PDT had closed all leakage in my abnormal blood vessels and my body is now gradually re-absorbing all the previous blood and leakage. Nevertheless there remain in my macula the scar and stain from the previous leakage. The feeling is like a white sheet of paper being stain with blood and after the blood dry up there is still a shade of pink in the affected spot of the paper and that particular spot can never be as smooth and flat as it was before.

So to conclude, for PDT treatment does seem to bring me some vision improvement although still have to see long term results.

David Cheung, 4th report:

The obvious thing I have noticed after the pdt treatment is that I am more sensitive to sunshine and light and my pupil did not resume normal until after about 78 hours.

What I currently feel are that:

A. I feel some dryness in both eyes more often. However I had that same problem before my wet md problem and regularly use artificial tear

B. for the last few days I frequently feel dizzy. A kind of in balance feel although not so serious as to feel the places spinning but it sure borders. I am not sure whether it is because the position of my spectacle (it takes a lot of skill to fit progressive lenses) or it is the different messages I am getting from my bad eye and my good eye which confused my brain and thus also my sense of balance. Thats the reason I made so much grumble of late about wearing glasses as I now have to adjust to the different visions and then my glasses.

Bob Wooten, 1st report:

I recently posted about my having hot laser treatment as a result of some bleeding following my macular translocation surgery last March. I've been back for a couple of checkups since the laser, and was told on Friday that I still have the blood vessels and the leakage around the edges of the laser scar.

So I'm getting scheduled for PDT either tomorrow or Tuesday, providing this meets with the approval of my translocation surgeon who is out of the country. (My surgeon is in Hong Kong where she is presenting at an international MD conference.)

I should know tomorrow for sure about the PDT. The bleeding is getting very close to the newly relocated macula and they don't want to use any more hot laser.

They have now performed 65 PDT treatments at Duke Eye Center, where I go, and they say that they are very happy with the results so far.

Bob Wooten, 2nd report:

I have just returned home after having my first PDT treatment this morning. As someone said, "It was a piece of cake". It took ten minutes to inject the Visudyne drug (30 cc), a three minute wait afterwards, then 83 seconds for the cold laser which is a red light that is focused on the retina. The eye is held open painlessly with a little device that has a lens in it for focusing the laser.

Presently, my vision is somewhat blurry which I think is to be expected. There is no pain or any other side effect. Speaking of side effects, they told me this morning at Duke that they just haven't had any reported except for one person who reported a lower back pain which disappeared in a few days.

I'm to return in eight days for a follow-up. They charged me $1530 for the drug and said that people are beginning to get this reimbursed by Medicare. I'm to stay out of direct sunlight for three days or so, but other than that no other special requirements.

For those people new to the list, I had macular translocation surgery in early March, and then was unlucky enough to have renewed blood vessel growth and leakage which has affected under 10% of the people having this surgery at Duke Eye Center. The PDT treatment today is intended to get rid of these unwanted blood vessels and the leakage.

Bob Wooten, 3rd report:

When riding to the hospital yesterday it looked as if there were blue, misty clouds in the road ahead; today, I don't see this, and it looks fairly clear to me. This may very well be just wishful thinking as I don't really believe I would see any improvement in just one day. I'll keep you posted.

Bob Wooten, 4th report:

It's been almost three weeks since my PDT and I think my vision is now about the same as it was before treatment. For a few days after treatment it seemed to get worse, and then improved back to where it had been before. I'm about 20/60 minus a letter or two with some good coaching, or about 20/70 on my own.

My doctors checked out my eye on the eighth day after PDT and said the bleeding had stopped. I'll go back in about three more weeks for another checkup.

David Cheung, 5th report:

I had pdt on 6/19, so some six week ago. For the 1st 2 weeks I did not feel any better nor worse and then by about the 3rd week the cloud blocking my center vision began to shrink and became lighter. On 7/18 (about one month after treatment) I went for a follow up check and was told that there were improvement and more improvement should be expected. Personally I myself had that same feeling too. How nice and bright then.

About one week ago, I remember sneezing quite heavily and then later I found to my disappointment that the cloud blocking my center v ision had grown back larger although not darker. I am not sure whether the sneezing reopen the abnormal blood vessels which were closed by the visudine drug.

In fact I once asked my doctor that growth of new blood vessels should be a response to the body's call probably for more oxygen and nutrition. Now that visudine closed the blood vessels then how are those natural needs of the body be answered and if not answered then what will happened. His answer then was that it is true that there is no answer and we will have to see what will happen then. With such background information, I believe that somehow our body find ways to break open previously closed vessels or found new routes to what the body feels it needs. Judging from the above, looks like it will be an ongoing battle as PDT did not solve the most fundamental problem of the elongation of the eyeball which thins the retina and caused new blood vessels to grow. All this is just the simple logical thinking of a layman. I am now scheduled for a second check up on 9/4 about a month later and about 10 weeks after PDT treatment and should know more by then.

Also after having the PDT treatment I regularly feel dryness and some kind of tightness in both of my eyes although my right eye is so far good.

David Cheung, 6th report:

As to PDT, I have last reported that about 3 weeks after the treatment, the fluid blocking my center visions seems to dry out and shrank so there seems to be some improvement. However by about the 4-5 week new fluid seems to have leaked again and the cloud blocking my center vision becomes bigger and thicker again. So, back to round one. I am now scheduled for a checkup tomorrow and looks like I will have to take another treatment within short.

Basing on my experience so far, I still hold the opinion that for now PDT will only temporary stabilize the leak to minimize further damage to the macula. It is not a cure, it does not address to the fundamental problem of an elongated eye ball in the case of myopia nor the continuous growth of abnormal blood vessels. It is more like a mean to buy time, and quite expensively, until a more comprehensive and effective method is found. Sounds depressing and I hope I am wrong.

I will report progress again.

David Cheung, 7th report:

My doctor confirmed today that there is indeed a small leakage in the sealed off area of my 1st PDT treatment. Therefore the cloud blocking my central vision has become bigger and thicker. He believed it is not serious and suggest to observe for a while more. He gave me some eye drops to help release some eye pressure and told me to return for another check up in 6 weeks. I had my 1st PDT two months ago.

As to the question of PDT not being a cure, he told me the following:

Wet md is like carpet in a room suddenly flooded with water. PDT is like closing the tab so no more water will be added to the carpet. How well the carpet will restore to its original look depends on how serious is the flooding and for how long. The more flooding and the longer the carpet suffers from water the worst. If water leaks again then more PDT to close the tab tighter. If no leakage then no further PDT necessary.

I know it is layman language but I certainly understand my position much better now. I am posting it just in case some one else might be interested and particularly those who have difficulties in getting information from their own doctors.

OLLEHC:

I am a 33 year old woman who was diagnosed in February with neovascular macular degeneration due to severe myopia. I have spent many months as a viewer of this forum and have found the information/compassion of others priceless. My sight in my left eye is 20/400. I had to wait 3 to 4 months for the FDA to approve Visudyne, I didn't fall into the compassion phase of it due to my age. I have had one treatment and had zero side effects from the Visudyne. I have severe allergies and expected something. I had reactions to the photographs. I am happy to report that the bleeding has stopped.

Bob Wooten, 5th report:

[My PDT] was done July 12th. There is a very small amount of the Visudyne drug. It varies from person to person, but I think mine was about 30 cc. The needle is normal size - I didn't notice anything more than for fluorescein or for drawing blood. I think the time they tell you to stay out of sunlight is the best indication, and this does seem to vary from doctor to doctor. My vision returned to "normal" in 6 or 7 days, and it wasn't affected all that much during the 6 or 7 days. I did not experience any surprises.

Bob Wooten, 6th report:

I didn't worry about the side effects or the newness of the drug. The procedure had been under a very closely supervised clinical test for a couple of years at a number of hospitals and retinal clinics across the country before it was ever approved by the FDA.

My vision didn't particularly decline before I had the PDT, but I was getting some bleeding close to the macula, and they chose this as a way to stop the bleeding, which it did at first. But after about six weeks more bleeding occurred. I have an appointment to return on Sept. 12th when I expect to receive another PDT treatment.

I am pretty well satisfied with what has taken place so far, but will feel much, much better when they tell me the bleeding is stopped for good.

Tom McHale Jr.:

It has been 4 weeks since my Dad's 5th PDT/Visudyne treatment for wet macular. His eye is dry and vision is maintaining 20/32-2 (from 20/200). His next visit is Oct. 5, 2000. He usually starts leaking 8 weeks after treatment but this was his first "totally dry" follow-up visit since he started PDT/Visudyne in January, 2000. I hope all of you have the same success as my Dad.

Camille Guy:

I've had this treatment too and it was really a breeze (well that's how it seems looking back) and certainly there was no unpleasantness.

As for the staying indoors, i was told to do so for 48 hours only. While the house was sunny and bright I wore the sunglasses they provided. I did slip out into the garden near the end of that time (out of direct sunlight) and my RS rang just at that moment and ordered me back inside. She said she was worried about the UV radiation in New Zealand, since we are under an ozone hole and may be worse affected by UV than other countries.

Staying indoors really wasn't a problem for me, but i do have a husband and kids (well they're bigger than me now) around, so I had company some of the time.

I know that sometimes reassurance isn't much help - at least not until you have first had a chance to air and work through all your fears and reasons for not doing something. i have just had to decide about having submacular surgery and for some days I was quite sure I wouldn't do it, but eventually, and with some encouragement from kind people on this list, it became acceptable to me.

Jean B.:

I have had four visudyne treatments with no problem. You have to stay out of the sun for five days. My treatments have not helped me, however, I was a borderline case...I have had a doctor who was very negative about this treatment and another who believes in it strongly.

Bruce Vance:

Wednesday, September 6th, I had the new PDT treatment. The prior week had th e 'focal' treatment on my other eye. I have to comment that the focal treatment was more demanding.

It has been two days since PDT, still in my 'stay out of the sun' stage (boring). Hoping that it has stopped the leakage, can't really say that I sense any improvement. Don't want to get my hopes up.

Creating this posting is hard work and frustrating, but beats the alternative of not sharing.

Roxanne, 3rd report:

I just got back from my second pdt this afternoon the 12th of September 2000 and it was even easier this time. I still had the two needles, one for the eye exam photos and the other for the visudyne. Doctor Germer did not have to put all that what I call jell in my eye this time to roll that big glass ball around in. This time I did not have all those bright bright colors. Although they were beautiful colors they were so brilliant that they were almost more than I could stand. My first time it took two days for all the jell to get out of my eye before I could really see past the blur. This time when he put the glass ball in to look all I could see was a little red light about the size of the blue in my eye. I could see his hand moving back and forth like he was scrubbing my eye and he said we are done. I could see out of my eye immediately this time except for the small gray square. Doctor Germer said my eye wasn't bleeding but that it was a clear fluid and I didn't understand what he meant but he said it was almost the same thing as vessels bleeding.

He said he would see me in 3 months and at that time more photos will be taken and he will determine if another pdt is needed. He mentioned all patients are different in the number of times he must do the pdt. I was so pleased to get this second treatment because I had blamed a little set back on my recovery due to a shingles flare up and Doctor Germer agreed that the shingles could have set me back a little.

I'm now back on track again and still would highly recommend this treatment to those who qualify. He again told me its pretty bright sun out there so stay in the house for the next five days. Go outside at night if you must.

Bob Wooten, 6th report:

I had my second pdt treatment at Duke Eye Center yesterday afternoon. This was on my "good" right eye. I had had my first treatment exactly two months ago. I still have some leakage - "two small blips on the fringe of the previous treatment" as it was described to me.

I have had no side effects other than a decrease in my vision today, which will probably last for just a very few days if it follows the same pattern as the first time.

Before having the pdt yesterday my vision checked out between 20/50 and 20/60 which was at least one line better than when I had it checked on Aug. 22nd at which time they opened the capsule (a capsulotomy), which immediately improved my vision.

With my left eye gone, with vision worse than 20/400, they're still doing everything possible to save the right one. So far, we're gaining ground. I'm keeping my fingers crossed and saying my prayers!

Bob Wooten, 7th report:

I wrote briefly about my second pdt treatment which I had last Tuesday. I have since experienced more vision loss each day since the treatment, which is the same thing that happened after pdt # 1. The last time this lasted around six days and then started getting better, and I am assuming, and hoping, that the same will happen this time.

I think this temporary vision loss is listed as one of the possible side effects, and I am just wondering how prevalent this might be.

Bruce Vance, 2nd report:

It has been over a week since my PDT and my right eye sight has improved. My post testing revealed that I could read about 3 or 4 lines on the chart rather that seeing only a very out of focus E. Left eye holding.

Roxanne, 4th report:

I saw the mail lady come up the drive and just ran right out the front door and was signing for a letter and the top of my feet started getting hot. Then it hit me. What am I doing out here in this hot sun. I ran back in the house and my feet were still hot. I put some noxema on them really quick. I have a sign on the back door but not the front. My grand son 4 got a paper and wrote something I can t read on it so i woulnd't do it again. the paper is there to warn me. I think I know what they mean stay out of the sun. I was only there not more than two minutes.

This is day 4 and i can see thru the grey mist enough to know that the steaks and poles are straight again. Each day the gray is getting thinner so tha I can see more thru the mist.

The eye is doing fine. The doc said they will check every three months to see if they need to do the pdt test again. Some do and some don't.

Monica Banks:

My experience with the sun after my first pdt. was I had waited until like the 4th day to go outside and I felt really hot. I had been inside the first 4 days with no sunlight at all. Then I had gone for a walk in the neighborhood on day 4 and just got really hot.

My other experience with the sun was after my 2nd treatment. I had problems with the IV. I really don't do well with the needles etc. So after the plug coming out and blood squirting everywhere, my vein collapsed. That was in the arm. So they moved to my hand. So I had the IV in my hand. After 3 days of being inside I gradually would expose myself to the sun a little at a time. Then went on vacation and then by day 6, I was laying in the sun on an air mattress in the water. My hand started tingling. And the same thing the next day. It was just my hand, not my arm or anything but just my hand. It would tingle like it was going asleep. I really felt weird. But then it went away. It only did that 2 days and then it stopped. Had any of you out there experienced anything like that? I just figured that spot on my hand had been exposed too much to the sun.

AJ, 1st report:

I'm in my third day from my first treatment and my vision is less today than it was yesterday. Mostly I notice everything is darker than before. Bright light is not as bright to me as it was yesterday. I can't wait until this turns around. I know I read about this before but I think we need to keep mentioning it so those that are experiencing it don't get anxious. Also I noticed this darkness appears as a very dark blue.

AJ, 2nd report:

I've passed the fourth day by going to church and to a cook out. I wore sunglasses and watched very carefully for burning. I'm happy to report that my photo-sensitivy seems to be gone. My vision's not back to normal yet.

Day 5 back to work as usual, my vision still down a bit but I was able to work a nine hour day, most of it in the sun.

Bruce Vance, 3rd report:

Two weeks ago I had the new PDT treatment on my right eye. A week before my left eye had the 'focal' type laser. So, going into the PDT I had a decent left eye with some laser scar tissue.

I developed my own little test for any progress on the PDT eye. While in bed I cover the left eye and look at the time on the alarm clock. To help with definition, I bought a large, about 3 inches high, digital clock that has red neon type numbers on a black background. Prior to the PDT treatment I could only make out that there was a faint red glow. Then one morni ng, about 6 days after the treatment, I could almost make out the numbers. Now it has been about 2 weeks and I can actually read the numbers. They aren't as clear as with both eyes or the left eye but are readable.

I had a follow up exam last Wednesday, mainly to keep track of the left eye, and had some suprising results. Just before the PDT I couldn't even make out the E on the chart, this time I read down about 3 lines. The technician said 'Is someone showing off?' What a great feeling.

This is the first good news of this experience.

I fully realize that this is an on going process, and a holding pattern is success. I don't get my hopes up too high. But down deep we all hope for progress.

I have taken other measures to help along, such as consuming mass spinach and related products, taking lutein supplements and getting off ibuprofen and aspirin.

I am sure, based on all the helpful information from here, that I will be taking more PDT's. But, it beats the alternative.

Thanks to all for there stories, they have helped.

Mary Smith

About one year after diagnosis of macular degeneration, I noted some sort of odd distortion in my vision. I contacted my RS, and was told I had a small leak. At that time I was 20/20 in my visual testing. I went in for my first PDT the following day. Fall of 2004 was the first PDT.