Photodynamic Therapy (PDT)
Accounts of Personal Experiences
Roxanne, 1st report:
I do not know the proper medical terminology but here goes. I had this Visudyne (verteporfin for injection) and the PDT (Photo dynamic Therapy)done 31 May 2000. I was restricted from any sun light for 5 day for fear of burning. Takes five days for you body to get rid of the dye. Putting the needle in the veins (for me) was the worst part of the procedure.
My treated eye is still sensitive to light and my vision has not yet returned completely. I still have some wavy line when I look at “The Amsler Grid and Visual Field Grid” and with a gray spot in the middle. This Amsler Grid and Visual Field Grid is available for downloading [from the MD Support site]. We are hoping that my vision will get better in a few more weeks. My doctor said another treatment in 3 months and perhaps even another 3 months after the that.
My day to day progress covering my good eye has been:
1st day: looking at tv – dark red filter
2nd day: looking at tv – lighter red filter with faded picture
3rd day: looking at tv – rustic color of brick red with faded picture
4th day: looking at tv – grey filmy picture but can make out colors – amsler grid to blurry to see
5th day: looking at tv – picture much clearer
6th day: looking at tv – picture more clear than yesterday. Amsler grid still blurred but can see outside of the square but veiled in center.
7th day: looking at tv – picture is more clear -veil on Amsler grid is a lighter dark square and center is smaller.
8th day: looking at tv – picture is clearer – no curves when I look outside at trees and electric poles.
Still can’t see the lines real good on the Amsler grid. Each day I seem to be seeing better. I am so happy to see no curves in venetian blinds, electric poles and trees.The good part of this treatment for me was the Doctor said with the treatment I would not go blind and perhaps my vision would also improve to some degree.
I only have this in my left eye, my right so far seems to be fine.
My Doctor accepts “Medicare”. I am on “medicare” and have secondary insurance that will pick up the amount that medicare approves and does not pay. Therefore did not stress my self with what the total costing will be. I did have to sign a paper the I would be responsible for the cost of the Visudyne ($1.500.00) should medicare not approve that portion. I called and they will pay for that also – just takes them awhile to process, I might have to pay and then be reimbursed later..
In our State of Louisiana (Louisiana State University) offered to put me on a list for this procedure to be accomplished. I believe this is probably for individuals who either do not have insurance or can’t afford it. It would be well for you to inquire if something like this is available at your colleges or universities.
Sorry that I don’t know more but will update you with my progress as time passes. Don’t not stress yourself with the procedure – that part is as we say “a piece of cake.”
Roxanne, 2nd report:
I am at the 12th day after receiving the Visudyne and PDT. My treated left eye is now only about three shades darker than my right.
I can now see to read with my reading glasses (I don’t need glasses in my day to day chores or driving – I’m 20 for seeing) which are 2.50 – but did not want to stress my eyes for an evening of reading so used my hands free magnifying lenses. I use my reading glasses to look at the tv guide, etc.
On the amsler grid I have a small gray square but the rest of the grid lines are straight, telephone and venetian blinds are not curved (how sweet that is).
About all I know right now – just wanted to catch you up on my improvement over the past four days. I just thank God that I was able to receive this treatment as soon as I did after being diagnosed and will give you more updates as time passes..
(Note from husband Tom:)
Roxanne was scheduled for her 2nd PDT on 3l August 2000 but RS Doctor Germer moved his offices across that street and everyone got backed up. She is rescheduled for the 12 of September now… Medicare here in Louisiana has approved the use of the injection so we should end up not paying anything…
David Cheung, 1st report:
Today I went to the Eye Center of a private hospital to have the captioned treatment. The whole process took no more than half an hour. It took about an hour dripping some clear liquid (I do not know what it was) into the vein in my arm to prepare me for the treatment. Injecting the visudyne took about 10 minutes while the laser took only 60 seconds. Injecting liquid into my vein seems even more complicated then the main job as I went to the toilet twice and in both times blood start to flow out to the plastic tube. I later find out this is because the plastic bag containing the liquid is not held high enough while I went to the toilet.
There is no pain and I can hardly feel anything. My eye was dilated before the treatment so my vision is still blurry up to now (almost six hours after the treatment). Other than that I do not feel any better nor worse. I was told that I can leave the hospital after 2-3 hours so I rush back home by taxi at about 1 pm covered with sunglass, long sleeve shirt and a hat.
It was pretty sunny then so I do later feel that it would have been better to leave in the evening after the sun is down.
Aside from being poorer now there is really not much else to report at this stage. I will advise of progress again later.
David Cheung, 2nd report:
For the 1st 24 hours I am to refrain from exposing eyes or skin to bright light such as bright sunlight, tanning salons, halogen lighting in homes and offices and light used in dental and surgical operations. For the next 24 hours I can resume outdoor activities but avoid excessive sunlight.
After the treatment I do not feel light condition inside the hospital any bother but I put on my sunglass anyway mainly because of the dilated eye. Because it is so boring staying in the hospital, I left the hospital about 2 hours after the treatment. It was then about 30 degree centigrade with bright sun shine. So although I was wearing sunglass, long sleeve jacket and a hat, took a taxi under shade I still feel the uncomfortable brightness and some heat in my skin. It is not serious but should be better if I have waited till the evening when the sun went down. I remained indoor since then and only went out briefly yesterday for 20 minutes in a car at about 6 pm which was not a bother again. I guess CIBA Hong Kong once told me that Visudyne only has a cell life of 4 hours so I reckon it is important to avoid strong light within the first 24 hours and that should be easy to manage.
Let me recap the progress as below:< /font>
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
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.
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.
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.
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.
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.
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.
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.
Basically the IV adminstration does not bother me, and on the first treatment I really felt nothing out of the ordinary. I did experience a cloudiness in my vision of sorts, with a red type appearance.I was not seeing things in the same way after the first treatment. Even when enough time had passed to allow for a clearing of vision, my vision seemed to be worse.
My RS schedules me for every 3 months, so I had no return visit before then. On that second visit, my vision had gone from 20/20 in my left eye to 20/40, and I had a notable grey type spot in my visual field. I did have another leak and another PDT in Jan of 2005, once again minimal discomfort. And an odd feeling in my eye, with some soreness that time, and a feeling of itchiness in the eye itself.
Again my eye did not seem better but, vision appeared to be worse. In April I again went in for another PDT and it was determined that I did not need to have one. But my vision was now at 20/50 I could not realy make out faces or see tv with that left eye. And I could not read normal print with it. There seemed to be something in the central area of my vision, and I had been told I had a scotoma that developed, but now it had gotten larger.
In July of 2005, I had number 3 PDT for another leaky vessel and visual acuity at about 20/65. I did experience more side effects from the Visudyne, but again, nothing that lasted very long. In November of 2005, I again went in for an exam and it was determined that I had another leak. My visual acuity had returned to about 20/45, but it was thought I needed another PDT, so I had Number 4. My eye felt very sore after this 4th PDT for along time I was bothered by it. It seemed as though something were in my eye. I could feel a roughness or scab type feeling in the back of my eye, and at times it itched, and watered alot more. There was more distortion, I could see far less than I had been seeing and I was getting worried when it did not seem to improve. So I went back in to my RS, and had another fluorescein angiogram (not my most favorite test). I was told there was no leak , but perhaps the disease itself had gotten more advanced. The scotoma looked huge on the angio pics that I saw, and I was told I did have quite a large scotoma.
I wonder just how much of the scotoma was created by the PDT treatment itself, as the leaks were small. I return to the RS around Jan 27th for another scheduled exam and treatment.
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.