ECHO Therapy
Page 2
Jack:
January 2, 2004
My report on the treatment is somewhat mixed. (I am 48 with Stargardt's). My left eye improved from 20/400 to about 20/50 for reading, but the central blind spot remains the same, and I still must use eccentric viewing. While that is great improvement in clarity of my left peripheral vision, it is not enough improvement to notice subjectively. My right eye has not responded as well to the drops. My right eye has a similar sized central blind spot to the left, but there is a small clear spot in the very middle that allows me to read normal font (only about three letters at a time though). I was hoping that the clear spot would enlarge with the drops, but so far there has been no change in the blind spot. The clarity of the right peripheral has improved, but the central clear spot is about the same at 20/30. With the drops in the right eye, my reading through the clear spot seems more difficult, though I can't explain why. Maybe it is that there is more eye strain while reading.
Overall, I would say my vision has improved, but it is a small improvement in terms of everyday life. I am in touch with Dr Nolan, and we are trying other dosages for the right eye. Even if there is little improvement, the drops are worthwhile if they slow down or stop the progression.
Cathy (for son Corey):
January 9, 2004
Corey went to see Dr. Nolan on Dec. 29 and 30th. The appointment was a bit upsetting, as we found his vision had deteriorated to 20/300, and at our last check he was at 20/100 most days and 20/200 on bad days. After administering the drops the first night and not getting much sleep in the motel, he had only improved a bit the next morning. We came home and administered in the other eye, and the next day he read 20/100. Yea, things were better, however, within about 2 days, the drug seemed to wear off, and things went right back to where they were.
I agree with some that Echo appears to create the pinhole effect. Corey has very large pupils, and when his pupils are constricted, which is usually the next day and for awhile after, he sees well. Once it starts wearing off, which is before the next dosage is due, vision is not good.
We are increasing the dosage, per Dr. Nolan, on Sunday and I feel we will have good results. If pupil constriction is all we get, and it helps, I am all for it. Anything is better than where we have been.
February 9, 2004
Corey's near vision continues to stay pretty much the same (20/50 ish) with distance vision we think at 20/100 and doesn't regret going to Dr. Nolan. He says that the best results from using the drops is that everything is brighter, and peoples faces across the room are clearer and not as hazy, and that he can see the blackboard at school much better. He had hoped that he would get enough distance vision back to be able to drive again. Doesn't appear that will happen. I think not being able to drive gives him the most stress with this disease. The other issues seem much more manageable. He opted to keep statistics rather than play basketball this year and reports that he can see the scoreboard much better since using the drops.
Colleen:
January 29, 2004
I was diagnosed with Stargardt's disease 8 years ago. Since the birth of my little boy last July, my vision had taken a big turn for the worse. So we thought we would try Dr Nolan out, and I am glad I did. I can drive still and can see color better, too. I went on the 19th, so it has been a short time still, but very glad I went.
Rhonda:
February 5, 2004
I have just been to visit Dr. Nolan last week and had my 1st dose of ECHO on January 29th. It does kind of give you an unusual feeling when you first wake up in the morning, in that it seems difficult to move your eye; but that only lasts a few minutes or so, then is back to normal. I have been noticing an excessive amount of floaters, although it is not the same as floaters I have seen in the past. It is more of a ripple effect.
But all that aside the next morning after I received my first dose of ECHO, my vision improved from 20/800 distance to 20/400 and 20/400 to 20/200 near vision, which was really exciting! I am still experimenting with the dosage. Last night, we diluted it with liquid tear, and that seemed to help. Dr. Nolan said he may need to give me a lower dose. So far, I have treated my left eye twice and right eye once, and it does seem to be making a difference. So far, everything seems to be going well, and everyday is a new experience to see what I can notice new for the day!
February 26, 2004
I have Retinitis Pigmentosa and was diagnosed at age 5 and am now 36. Prior to using the ECHO, I was only able to read the 20/400 line on the eye chart, and now can easily read the 20/100 and some of the characters in the line below that one; but still can not make them out too clear. I have also noticed imrovements in color, which seems much brighter and more distinct. Reading the computer is much easier now, and my eyes do not seem to tire so quickly.
Mindey (for son, Matthew):
February 11, 2004
Prior to the drop, Matthew's distance vision was 20/100 in the left eye and 20/140 in the right eye. His near vision was 20/40 in the left eye and 20/50 in the right eye. Matthew had two drops in the left eye this past Monday night. On Tuesday am we went back to Dr. Nolan's office. After receiving the drop, Matthew's distance vision was still 20/100 in the left eye and 20/140 in the right eye. We saw a slight improvement in his near vision, which is now 20/30 in the left eye and 20/30 in the right eye.
Matthew experienced no side effects. He didn't notice anything different at all. You can't really prompt him for answers, because he'll say what he thinks you want to hear (he's 7). We only noted the improvement in his near vision from reading the card. I'm not disappointed, as these are still minimal gains.
I only hope the drops halt the progression of the disease, as his near vision is still very good. I'll continue to post his progress over the next few weeks.
Geoff:
February 26, 2004
I started to notice vision problems in the year 2002. I was diagnosed with one of the rarer forms of hereditary MD called Central Areolar Choroidal Dystrophy (CACD).
I have been using the Echo drops in both eyes for a couple of weeks as per Dr Nolan's instructions. First impression was that the drops had not made any difference to my vision. Over the next few days I thought that maybe things looked brighter and sharper but,in truth, I think the improvement noticed is bordering on the imagined. Colour vision is much the same.
I will finish one bottle of drops, which should last about 4 weeks and then have a break of a few weeks before starting the second bottle. This should tell me if the drops are really having any effect. It may be easier to tell if my vision actually worsens after stopping the treatment.
I was not expecting a dramatic improvement, but I thought maybe a small improvement would show the drops are having some effect. The big question for me is whether Echo has a beneficial effect on the longer term progression of the condition. Will the treatment slow down or even halt the degeneration?
April 5, 2004
I used one bottle of .015% strength drops which lasted just over four weeks. I applied one drop to alternate eyes every other day. Initially, I thought that maybe things looked brighter and sharper once the side effects had worn off the day following treatment. However, I now think that this was either imagined or a short term effect. I have not used the drops for about two weeks now, and my vision has not changed noticeably without the drops.
I have another bottle of .015% drops, so I may resume treatment but increase the dose by using two drops instead of one and see if this makes any difference. Verdict so far is that the Echo drops have no beneficial effect for me.
May 24, 2004
After using the .015% drops and not seeing any improvement, I have been trying the .02% drops for the last 3 weeks. I still see no improvement. If anything, my vision is worse due to the side effects of dim/blurred vision which lasts about 18 hours after each treatment. Today I went for my 6 monthly check up with my Ophthalmologist and as usual, I was given a field test. I asked for a copy of the test results which also include results from earlier tests prior to starting the Echo drops. The field test did not show any improvement over previous tests and the doc confirmed that there had been no improvement.
This is very disappointing as even a small improvement would indicate that the drops are doing something positive. It is still possible that the Echo drops may slow down progress of the condition, but unless the proposed clinical trial includes a long term study, it is still going to be a matter of faith.
On balance, I don't think it is worth continuing with the Echo drops. For me, at least, they are not having a beneficial effect.
Tom:
February 26, 2004
(To Geoff:) I have been on the Echo drops since about Thanksgiving. I have cone rod dystrophy and I am 45 years old. It sure sounds like we are having the same experience. The color changes, the eye chart etc. I am happy with the way things are going, I hoped for more, but the drops are what they are. Having about the same vision as you, and close in the type of disease, I'm sure you would agree, any improvement is a big deal.
Debbie:
March 10, 2004
I have a wonderful 17 month daughter who has been completely blind since 6 months of age. She was diagnosed with Leber's Congenital Amaurosis.
We found Dr. Nolan and were very skeptical about eye drops helping her blindness. However, I went with my gut and took Maddie to Connecticut.
We have since witnessed a miracle. His ECHO treatment has changed our entire household. Instead of teaching Maddie how to get around in a dark world, we are now filling her toy chest with bright beads and lighted toys. She has not only began focussing, she is even tracking objects. This is from a child who could see NOTHING. She has even grabbed for her pacifier twice.
Dr. Nolan is a blessing to us. We thank God each day for finding him. Although our child may only see some outlines of objects, I go to sleep each night knowing my child will be alright in this world. She now sees light and may even see my face one day.
Firoz:
March 23, 2004
My father, my wife, and I have just returned from Farmington, where we saw Dr. Nolan on Monday, March 15. He carried out a vision test. My close distance (reading vision) was 20/300. He carried out a peripheral vision test (found to have blind spots), a color vision test, (90% color vision), and an angiogram. My left eye was the better of the two. I was told to treat the left eye with the ECHO drops Monday night. My father had the same tests, but his retina has substantial damage. He was asked to carry out the same regime as myself.
On Tuesday morning I noticed some difference in my reading vision, and my father noticed the foggy image was not as foggy. When we went to see Dr. Nolan on Tuesday, my eye test showed my distance vision (20 feet) to be as it was on Monday. Closer (10 feet) vision had improved by 3 lines, but my reading vision had improved to 20/100 in the left eye. My father could make out the first letter on the vision test at close distance that was not seen by him on Monday. We were told to treat the right eye Monday night.
We were told to administer the left eye again on Thursday again. When we visited Dr Nolan on Friday, before we returned to Britain, my eyesight in both eyes had improved. For 20 feet distance there was an improvement. 10 feet was improved by 6 lines, but the greatest improvement was in my reading vision from 20/300 on the Monday to 20/70. Color vision went to 100%.
My father had an improvement that he can make out objects like a clock and picture frames on the wall, which was not possible previously. We are continuing our treatment and will keep you posted on our progress. We had lost all hope of improved eyesight, but Dr. Nolan has given us a new lease on life.
Gretchen (for Annie):
March 31, 2004
Good news for Annie! We arrived back home in Minneapolis last night after seeing Dr. Nolan in Connecticut. When we arrived at Dr. Nolan's office on Monday morning, Dr. Nolan and staff performed many eye tests on Annie. Annie was diagnosed with Stargardt's disease the end of August. She was 20/120 in her left eye and 20/100 in her right eye. Mid February her eyes worsened to 20/200 in both eyes. When Dr. Nolan checked her eyesight on Monday, her left eye had worsened to 20/300 and her right eye 20/200. That night, she read for 20 minutes and then we put 2 drops in her right eye (better eye), and then she was to sleep for 8 hours uninterrupted. The next morning she couldn't see any difference, but we had also learned that sometimes it can take awhile. We returned to Dr. Nolan's office, and when she read the eye chart, her left eye could read at 20/200 and her right eye 20/100 (minus one or two as I recall)! She remarked that colors seemed brighter. We had to head to the airport right away, and sitting at the airport, Annie remarked that there wasn't as much glare around lights. Last night, she received her 2nd dosage. This time, to be put into the left eye, with only 1 drop at a slightly higher dosage. This morning, she was tweezing her eyebrows and said she could see her eyebrows better! So in a nutshell, it's working!!!
Dr. Nolan and his staff are outstanding people. Incredibly nice and helpful! We are to return in 6 weeks. I wanted to update everyone and will continue to do so and to also thank everyone for writing in, because we would not have heard of these drops had it not been for this website. We are very excited and grateful. We will continue to update!
Susan:
May 8, 2004
I have triumphantly returned from my visit to Dr. Nolan. My vision has improved dramatically. I was diagnosed with dry MD of my left eye in November of 2003, but after the first ECHO application, my vision is better than it was several years ago. The day after the first application of ECHO drops, I was able to read the newspaper without glasses, something I had not been able to do for 13 years prior to my diagnosis. Vision in my affected, treated eye is much better than in the unaffected, untreated eye, except that everything in the affected eye is much darker.
Lesile (for daughter, Melissa):
May 11, 2004
Just wanted to let you all know about Melissa. She actually is home from school today with a severe headache. One of many that she has had since she started using the drops. Her pupils don't seem to be constricting like I thought they were suppose to, and she says she doesn't notice any real improvement. She says the headaches are the worst. Especially when she tries to read. We have another appointment May 21st (her birthday). Hop efully, Dr. Nolan will be able to help us.
Marian:
Sep 29, 2004
I have hesitated to write to our group about my ECHO experience because I didn't want to say anything that might keep someone from possibly getting help from ECHO. However I think I should talk about it now. My experience has been disappointing.
My daughter and I flew from CA to CT in early February. We put one drop of the .015 ECHO in my right eye. The next day in Dr. Nolan's office my right eye stayed at 20/40 but the color vision improved from 25% to 75%. My left eye went from 20/30 to 20/20 plus. We were elated. However, when we returned to CA I did not have that improvement.
We again flew to CT in early June. At that time my right eye tested 20/70. Dr. Nolan explained this as that on different days our eyes see differently.
Last week I saw my retina specialist. My right eye had worsened to 20/90. My left eye was 20/30. I told my RS that I had doubts about the treatment. Before I went to CT the first time, I gave my RS copies of Dr. Nolan's studies and told him I was going to see him. I wanted him to know about it in case I had any problems when I returned to CA. At that time he had reservations about the treatment but knew I was going to do it and wished me good luck. All along he has said he never could understand how it could work. He also has had a concern that the action of ECHO on the pupil can eventually wear out the muscle (not his scientific explanation) and eventually an RS can't dilate the pupil to examine the eye.
When I commented that Dr. Nolan was charging for the treatment, he very quietly said "A physician should never charge for an experimental treatment."
I am in a quandary. I am afraid to stop the drops and I am concerned about continuing. I have had a lot of trouble with glare since I have used ECHO. I have also had the "dimming" which is pretty scary when you don't know what it is. Also tearing and puffy eyes.
Mindy:
Sep 29, 2004
I took my 7 year old son, Matthew, to see Dr. Nolan, too. He took the drops for 4 months, and we saw no improvement. His vision was 20/100 and 20/100 (L and R eyes). At his next appointment at Hopkins, which wasn't until a good two months after I had stopped the ECHO drops, Matthew's vision had improved to 20/70 (or he was having a good day). We saw no benefit whatsoever.
Rosie:
Sep 29, 2004
I saw Dr. Nolan in June 2004 and have been taking the drops since then. I don't think my retina doctor would recommend taking them and I have not informed him about this. I have dry MD and a scar (from macular hole surgery). I think the eye with the scar got a bit better and the other one a bit worse. I asked Dr. Nolan whether vision in his patients ever got worse. His answer was NO. I'm also very nearsighted (corrected with IOLs and glasses) and it might be that my vision got worse because of that.
Rhonda:
Sep 29, 2004
I saw Dr. Nolan in late January 2004 and have been using the drops since that time. I am 36 years old with RP, and initially did notice some improvement in my vision from using the drops. After my first treatment, my vision improved from 20/800 distance to 20 /400 and from 20/400 near to 20/200. I have also noticed some improvement in color vision and in night vision. Although I must say I too have had a lot of problems with the extreme dimming effect that the drop causes in the treated eye for the next day or so after using the drop. My left eye seems to do a little better, the dimming is minimal and usually does not interfere much with my working on the computer each day. Although my right eye has never done too well on the drops and the dimming effect is so extreme that I have a very difficult time reading the computer screen for at least 2 days after treating that eye.
Recently, I have started only treating my left eye once a week and not using the drop at all on my right eye. I had asked Dr. Nolan about the dimming effect a few times, and was always told to dilute the drop with liquid tear, but that has never seemed to have made much of an improvement.
I am still continuing with the drop, because as I said I have noticed some improvement . . . It has definately helped to keep my eyes from straining, as they had before using the drops, and I have slowly begun to notice some improvement in night vision, although it does seem to differ from day to day, depending on how soon after the eye was treated.
I have seemed to notice more of a glare than I had previously. I have tried several different types of sunglasses to help cut back on the glare, but it also cuts back too much on the light I require to be able to have the best vision.
I am planning to continue treating my left eye for now and may eventually try the drops, possibly in the lowest dosage on my right eye to see if there can be any improvement there. I am currently using the .015 dosage which I believe is the 2nd lowest dosage that Dr. Nolan prescribes.
Sharon:
Sep 29, 2004
I have been using the Echo drops for almost 1 year. I am very satisfied with them. I have had no problems once I got the dosage schedule worked out in a way that worked best for me. I still have variations in vision i.e. good seeing days and bad seeing days, but the overall effect on my vision and mobility is definitely worth it for me. It is important to follow the instructions for best results but I would recommend that you try it!
I have found the good day bad day flux is much less, and the blind areas are improved to the extent that the interference between eyes is greatly improved when I am current on my drops. I can really tell the difference when I have not taken them on schedule.
As far as charging for the treatment, Dr. Nolan only charged me for the testing, which was reasonable for the amount of tests and the time that he spent with me (both times). He came into his office on our scheduled appointments, and then on Saturday and Sunday morning as well, to check the progress. I pay a minimal fee ($35) for the drops, which last me about 6 weeks. I know for a fact that he has done the testing for free for those who have not had the means to pay. My follow up visit did not cost me anything either, even though more tests were performed. This is experimental, but he has not asked anyone to try it. I called him.
I realize that this doesn't work for everyone but for me, my vision improved, my test results improved (showing more blood flow to the retina), and I have had little to no side effects in this one year trial. I had nothing to lose, as my vision was 20/800. I improved and maintain 20/200 near vision and 20/400 distance vision. Of course, when one's vision is that poor, these numbers may not translate in huge practical gains. In other words, I am still legally blind, but the improvements in color and mobility in dark or bright light have made my life easier.
Tom:
Sep 29, 2004
I am also a user of Echo therapy for about a year, and I have had about the same results as Sharon. However, for me sometimes less is more. I don't try to stay on a schedule, that seems to get me in trouble. Things like fogginess and glare are the biggest issues and that seems to happen when I have too much. Too much happens when I put the drops in or if they go in too close together in days. I seem to have a good handle on how the drops work for me. I would advise anyone to use the drops when they think they need them not on a pre-planned schedule. What was nice to hear, was that a lot of you have experienced better color. Me too!
Pam:
Oct 8, 2004
Lesley is still on the ECHO drops. Next month will be a year that he's been on them. Hi s vision has maintained 20/70 with contacts. Before the drops, his vision was 20/200. He's in college and majoring in Computer Programming.
Muhammad:
Feb 11, 2006
I would like to share my visit to Dr. Nolan. Dr. Nolan is very kind hearted and he explained every thing in detail and he finally diagnosed [my son with] Stargardt's disease. Results are as follows.
January 30, 2006. Best EDTRS log Mar distance acuity (Snellen equivalent) right eye was 5 feet/ 40-2+2 and left eye 5 feet/100-2+2 fixation. Best near acuity (Snellen equivalent) was right eye 20/100 and left eye 20/160+2 at 3 inches distance. Color vision right eye 0/10 and 0/10 left eye no control.
1 drop every alternate day was advised and the results showed some improvement details as follows.
On February 3, 2006. Best distance acuity EDTRS log Mar (Snellen equivalent) was right eye 5/40+2 and left eye 5/63-1+2 eccentric fixation. Best near acuity were right eye 20/80 and left eye 20/125 at 3 inches distance. Color vision was right eye 2/10 with control and left eye 1/10 with control. Dr. Nolan told us if Muhammad stops these treatments, vision may deteriorate. Dr. Nolan told us to follow-up after 3 months.