Gideon Naor, 1st report:

I underwent hesitantly, as patient #12 of this country ..., the treatment on the first PDT instrument which barely arrived in Israel. Knowing the probability of 1-6 necessary repeats during 1.5 - 2 years, I am glad to report that 8 months after the one treatment the leakage stopped completely, the vessels are closed and no additional treatment was needed up to now. (Right in these days a new leakage appeared, however not under the vision center, so that the opthalmogists have decided meanwhile not to touch it, thinking that the harm in forming another PDT scar seems to them meanwhile greater than the benefit.)

I would like to mention that soon after the treatment, strangely enough, I felt a revival of my first ARMD eye, which was completely useless and out of order for 8 years. Although not being PDTed it started gradually to somehow function again. I am able to read slowly with it, see much less distortions and the sight is clear and not nebulous as it was. My hunch is that the Visudyne (called here Verteporfin) has entered the vessels there, and even though not treated by laser, the daylight during the coming days, (weeks months?) affected it somehow. My professor said this is impossible, it rather stems from my efforts to read...this happens sometimes. Has someone else of the PDTers on the List experienced something similar?

Gideon Naor, 2nd report:

After consulting with my doctor about the question of scarring after PDT, he offered this information:

There are some "scars" after the PDT.

To my (our) question about the "unscarring" PDT, which supposedly is *the* main benefit of this new treatment vs the previous hot laser, he replied:

1. Any treatment leaves some tissual changes. The very closing of the vessels by the treated chemical causes these changes.

2. The difference between the two treatments is that the scar tissues of the conventional hot laser occupy the whole width of the retina and the choroid. On the other hand, the scarring process of the PDT occupies only the choroid and the offending blood vessel.

Roxanne, 5th report:

I have been reading all the mail about pdt scarring. When I first found I had md, I had a 1/4 th inch grey area. and crooked lines. After my first pdt I had straight lines and an inch of grey area. The grey mist never dissappeared. It got a lot thinner. My lines turned crooked again. Then on my second pdt the lines again became straight. The inch of grey mist is there but every day gets thinner. I keep hoping it gets better.

The good news is i have straight lines again and i won't go blind. I can live with that.

Anna:

I finally had my first and only PDT 15 days ago. I returned today to see the RS and he had very good news even though I did not think he would. I have gained vision from 150 to 125 and he pointed out to me on my photos that there was much less fluid although I still see lots of lavender colored fuzz which moves around and in and out of my field of vision whether my eyes are open or closed. I was delighted with his news. He also told me that "they" (whoever that is!) are working on developing a contrast dye to take the place of Iodine contrast dye to which I am quite allergic. I'll be happy when that is accomplished so that I will be able to take full advantage of all treatment options. I am to return just after the first of the year.

After my PDT I felt much more blind. The blinding cloud seemed to grow larger and larger. After two weeks the cloud diminished somewhat in size although not dramatically. I was able to see faint things on the TV and read a trifle better on the chart. I am still hoping that the vision will improve more as time goes by. I see very well out of my other eye, thank God. The actual procedure was not too bad. I did have extreme burning in my arm pits and in my lower back along with pain in the back. The pain ceased as soon as the injection of Visudyne was completed. The 83 second countdown of the laser prodedure seemed endless but was not painful. The following days of being confined were very easy as I had planned for them. Almost anything is worth slight improvement in vision!

I hope that I may have helped a few wanna be's for PDT. By the way, my first RS told me that I was NOT a candidate for the treatment. This DR said I was and now he has shown me how it has helped.. ALWAYS get a second opinion!!!

David Cheung, 8th report:

I had my 1st pdt on 6/19 and because of new bleeding on the same eye I had my 2nd pdt treatment on Monday 10/9.

Like the 1st treatment it was quite a simple operation. 30 ml of visudyne was injected into my vein and non thermal laser shone into my retina for 60 seconds. Doctor said he had shone on a larger area this time and so should have better effect. Because of the very strong light and the dilated pupil, there were a larger area of darkness in my vision which last about 2-3 hours. What then left is the blur because of the dilated pupil which resume normal today (after about 72 hours). Doctor said the strong dilation is necessary to prevent the pupil from contracting during the strong laser light.

The treatment effect came earlier this time. Today I already felt some slight thinning of the black cloud blocking my center vision. I am beginning to be able to see through that cloud some big and bright objects. Now that the treatment should have prevented new blood or fluid from getting into my macula, I envisage my vision will continue to improve as my body gradually absorb the old blood and fluid left inside the sealed area.

I will have my 1st check up next week and will certainly report progress again.

Bob Wooten, 8th report:

I had my first PDT treatment on July 12th. Following subsequent bleeding, I had my second treatment on September 12th.

I went for my four week check up day before yesterday, and am real pleased to report that the doctor told me that there was no new bleeding, and the bleeding I had had previously is being absorbed by my body. I go back in four more weeks for another check up.

Carolyn Rosin:

I wrote to the list a month or so ago in regards to my mom receiving pdt. She was undecided and not sure she wanted to go through with the treatments. I read so many supportive emails from all of you and printed every one to share with my mom...Thanks to all of you, she finally decided it was the right thing to do. She had her first pdt last week. She reported there was "nothing to it" and had no side effects. Today, a week later, she says the gray spot is slightly smaller , although still many wavy lines. She knows she will be needing at least one more treatment...

Thank you all so much again. I am not sure what we would have done without this great list and the information all of you provide.

Gideon Naor, 3rd report:

In the last days I experienced some strange temporary changes in my vision in my "better" eye, the one which was treated once by PDT, last January. Since then the leakage stopped completely. However a new leakage appeared 2 months ago, but since not under the vision center, no treatment was done. Two angiographs showed no changes. The treated place remained closed and dry with some connective tissue formed. The new leakage did not develop further. But still I felt some worsening of my vision in that eye. (It was recently 20/200, for the first time worse than the other "bad" eye, 20/180 (treated hot laser 9 yrs ago). So much so that in the last week or so I felt during reading like losing gradually my central vision and having to rely more and more, even completely, on peripheral vision, while reading. This quite frightened me.

It looked like after all the efforts I made, and after gaining quite some speedy reading again, that all this was in vain. But today, suddenly, not gradually, the vision returned again to its previous better condition, as 2-3 weeks ago. At once I gained again the central vision and that former speed. This of course really cheered me up and I hope it stays so.

Barbara:

I went for my 6 week check-up. The 2 areas that were leaking in my right eye are completely gone. A large area in my left eye that was leaking was greatly reduced. My doctor is very pleased. This was more than anyone expected.

Debra Harvey:

I had a second PDT today about 3 hours ago. My eyesight measured 20/200. One week ago it was 20/70. I really hadn't noticed any difference and my doctor seems really concerned about my subjective impression. My vision measures can differ dramatically in a short period of time.

The nurse put some anesthestic eye drops in my eye. The doctor then came in asked me to put my chin in the device and put a huge contact lens-type device on my eye to keep it open. She adjusted a strap on the back of my head to hold my head into position. He spent some time adjusting the laser. It was mildly uncomfortable, but no big deal. He said that this time, he was going to treat both leaking areas simultaneously, which is what I expected. Last time, he did two 83-second laser treatments on the two areas. One is subfoveal--the other is now juxtafoveal (very close to the center) Then he left.

The nurse inserted the IV and injected the drug. That was relatively painless and took about 5 minutes. Towards the end, I felt some tingling in my forearm. She and I talked for about 5 minutes and then the doctor came back in. I got in position again with the huge contact lens on my eye. They did a count down and then he shown the laser. I saw a red circle that looked like a moon for a while. It changed in appearance a few times. The nurse gave prompts: "less than one minute, 45 seconds," and the doctor verbalized encouragement. I felt some liquid dripping down my cheek. Don't worry about blinking--you can't with that huge lens on your eye.

He stopped, said it went well and I asked some questions and he showed me the pictures of the leaks. I go back in 6 weeks (usually it's 3 months but because I have myopia, he's watching me more closely. The nurse then irrigated my eye by pouring what looked like saline in it.

She warned me about being photosensitive and told me that my eyesight might be worse for a few days because of the laser. She gave me some cool looking pink sun goggle that fit over my glasses. Unlike last time, instead of going home, I came to work. About an hour after the procedure, my eye started aching a little as the anesthesia wore off. My eyesite in that eye is definitely more blurry than it was before I had the procedure.

All in all, it was fine.

Roxanne, 6th report:

I had my 3rd PDT treatment this afternoon. My treated left eye had a little more serous fluid build up this trip than it did back in September. I could read the eye chart top line only uncorrected (sigh) 20/200. Immediately after the treatment my crooked lines were gone again (smile). I had no bleed this time, just the clear serous fluid. My left eye is scheduled for another look see in March 2001 with a probable 4th PDT at that time.

Merritt Buckland:

My grandmother went for another PDT treatment Friday, and the doctor was just blown away by the improvement she showed. He said he doesn't usually see anything until the third treatment, and she is already significantly improved! From not being able to read the chart at all, she can read all but one letter.

A New Year's gift to my grandmother and our family and me!

W Davis:

I started to notice AMD symptoms several years ago, and they seemed to disappear after I started taking lutein and bilberry supplements. They occurred again this past year and finally, two weeks ago, I received my first PDT. My vision wasn't that bad prior to this procedure. I could read using glasses and there weren't any wavy lines at that time. After the treatment, indoor lighting looked as dim as a 20 watt light bulb. About 8 days later, I started to see wavy lines again. A medium gray spot I saw in dim light conditions increased 50% about a week after the PDT. When I'm outside, vision is fine except for a slight decrease in color. It is now two weeks after the PDT and my sight is about the same. Dim indoors, fine outdoors with wavy lines.

Gideon, 4th report:

Update: Last week, on the fourth checkup, the doctors decided unanimously that signs of drying up and absorbing the fluid are clearly seen. They both assume and hope the thing might be over. My RS even added that no further deterioration of sight should be expected "if you will continue to have luck"...

This sounds too good to be true, but I definitely share the hope. It seems to me that almost 14 months with only one treatment is quite unusual, unless someone else can report something similar.

Roxanne, 7th report:

I had my 4th PDT two days ago in my left eye. I knew that I needed a treatment, because of the crooked telephone and fence posts, and my RS agreed. It was painless, as usual, except for the needle to put the dye in. I had no blood, just serous fluid leakage. As he lasered the area I think I could actually see the fluid disappear.

Tom:

I was diagnosed in 1999 at 59 years old as having wet MD in my right eye with classic bleeding. As soon as the FDA approved PDT for wet classic bleeders, my retina surgeon put me into treatment. I had three PDT procedures, the first in early May, the second in August, and the third in November, all in 2000. Before the PDT treatments, if I looked at a person with only my right eye, I would see only the outline of the person's hair and head. After the 3 treatments, the bleeding stopped, and I could see facial features. There was some permanent damage before PDT was approved. Everyone and everything appears thin, and I lost most of the ability to see yellow with the right eye. At the last 2 three month checkups, the right eye has been stable, with no evidence of bleeding. I can only read with the right eye at 8X magnification, and I would give up driving if I had to use only that eye.

J.D.:

Thought it might be a good time to give you an update on my MD progress. A little background: I had two PDT's in Birmingham ordered by two RS's in Huntsville, AL. All went well until I had a hemorrhage in my wet MD eye. This resulted in my "blur circle" going from a one inch diameter to an oblong one about 7 X 9 inches. My two FS's gave diametrically opposed opinions on what should be done so finally settled on nothing. This is when I "packed my bag" and went to a different RS in Nashville, TN. He did a flourescein angiogram and a PDT and scheduled me for another exam and FA in six weeks. At this time my blur circle had expanded to 12 X 14 inches. About 5 days after the PDT, I started taking 6mg of lutein a day. Two days later, my blur circle started shrinking, and it is now down to about 9 X 10 inches. I don't know whether my improvement resulted from 1) the PDT or 2) the lutein or 3) a combination or 4) none of the above! All I know is that I can see better, because the blur circle was beginning to impinge in my left peripheral vision. The proof of the pudding is that my new RS actually said I was somewhat better! This is the first positive statement about my vision that I have heard in over a year. I am actually looking forward to my next FA in August.

Roxanne, 7/5/01:

My fifth PDT treatment went well. My R/S said my bad treated left eye vision was slightly worse than three months ago, but the good part was no blood, only serous fluid leaking, and in a lesser amount then previous. Almost immediately after the cool laser PDT treatment, I could notice again that the "s" curves in the venetian blinds were gone. My good right eye, though slightly affected by wet md, was better than previous, and so far no treatment is required. Maybe all the greens is paying off.

Alice, 1st report:

I had my treatment to the right eye yesterday. The Retina Specialist administered the drug. It took ten minutes. He didn't have too much of a problem finding a vein. He felt around and found one in my left arm. Then he adjusted the aperture on the laser. Placed a lens on my eye and directed the beam into my eye for precisely 83 seconds. That was it. They told me that I may experience low back pain and possibility of dimmed vision in that eye for the first few days. So far I haven't had either. He also told me hopefully that I will fall into the percentage that notices some improvement in their vision. (I hope so) I went home all covered up. This is the second day and I keep forgetting not to turn off the flood lights in my kitchen. They also told me not to be on the computer, because of the glow of the monitor. So I will say bye for now.

Alice, 2nd report:

I had my follow up appointment today on the PDT treatment. It looks like the treatment worked. My vision today was 20/200. Before the Visudyne treatment it was 20/400. My left eye is the same 20/80. The retina specialist wants me to come back in about three months to make sure everything is still okay. It was a very good feeling to get good news for a change at the doctor's office. Now I will take it one day at a time until the next check up.

Dave:

I had my 4th PDT but it didn't go too well. The Tech had started the Visudyne infusion in the back of my left hand. Somehow, someway, the needle slipped out of the vein and began injecting Visudyne under the skin. The Tech finally noticed what she called "leakage" and removed the needle. She observed 3 or 4 cc of Visudyne still in the vial and somehow concluded that the vein had received it's necessary 15 cc. The PDT was then administered.

My daughter-in-law (chauffeur) and I started back home (80 miles) and got about half way when I removed the cotton bandage from the infusion site. Almost immediately I began to have excruciating pain in my left hand and arm. This was at about 2 1/2 hours after the PDT. The pain continued until we got home about one hour later. I then called and talked to the Tech who had done the infusion. She advised me to take Tylenol and use a cold compress on my hand which helped for a little while. I finally called and talked to the RS last night. He seems to think that I had somehow exposed myself to the elements even though I kept covered from head to toe. I tried to explain that I did not have a sunburn on the skin but a deeper pain as in broken bone.

I have had two phone calls today, Thursday, the second from the Tech who advised that the hand had very little fat to help dissolve the Visudyne and therefore it was going to take a little while for the pain and swelling to go away. I asked her if this sort of thing had happened there before. She said two men had the same thing happen. I also asked about permanent damage and she said not likely. So, the bottom line is that I'm going to hurt for a while. Of course if it gets worse, they want me to call.

Roxanne, 8th report:

I needed the 6th pdt treatment. Dr Germer (my RS) said the serous fluid was noticeable less than previous treatments. He wanted to do the treatment in order to keep me stabilized and he wants to see me again late December/early January for another look see. My good right eye is 20/30 (better than three months ago) while the treated bad left one is CF2 (most know this means count fingers - two) - can't see the big E (which is 20/400) at all. I feel blessed with the vision I still have.

I am so happy for Frances and Gideon who each have only had to have one pdt treatment. Maybe I will be able to stabilize after my 7th or 8th.