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• wet macular degeneration
• Posted: 2008-01-01 15:32:16 By Phyllis G
• You should have the lucentis or avastin shots in your eye. The eye is deadened and there is no pain. The eye is sore for a couple days but that is all. The sight is greatly improved. You need to have the shot as soon as possible. Also after some time it may not be necessary to have a shot every month.
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• Happy New Year one and All
• Posted: 2007-12-30 13:59:30 By Mary S
• Have a Very Happy New Year everyone.May this year bring better vision and a cure to many diseases, including eye disease, and MD.
  mar
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• recently diagnosed wet amd
• Posted: 2007-12-23 12:47:21 By jack g
• i was recently diagnosed with wet amd.the rs said the only thing that would help is avastin or lucentis.he gave me my choice of either one.i'm having a hard time working up my courage to be injected in the eye once a month.anyone have any input on what to expect? he didn't have much to say when i asked him.
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• vitreous veils, floaters
• Posted: 2007-12-20 19:25:41 By russ r
• to all
  
  I've come upon a list of MD's who do floater treatments; check out www.eye-floaters.com/links-surgeons.php
  Please also note that all MD's listed including the most notable, Karickhoff, and Geller, do not have any comments about their practices or treatments from patients or others. Any choice of MD would bear loooking closely into their practice background. russ r.
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• Drusen
• Posted: 2007-12-18 21:56:43 By Phil M
• My opthomologist told me I have 20-30 small to medium drusen in my left eye near the macula and a few pindot sized ones in my right eye. Does anyone know the rate at which these can move into the macula. Has anyone had drusen that seem to just stay as they are and if so,for how long.
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• December IMDSG webcast online
• Posted: 2007-12-18 15:36:04 By dan r
• Dear Friends,
  
  This month's International MD Support Group session with Ellen Troyer ("Holiday Food Fun and Eye Health") is now available for viewing online--but be careful, you don't want to watch it with an empty stomach! You may access Ellen's presentation, which includes several tasty recipes, from:
  
  http://www.mdsupport.org/nsg.html
  
  I hope you have been enjoying and learning from these monthly presentations and that you are looking forward to the line-up for 2008. You will find them listed at:
  
  http://www.mdsupport.org/nsg/2008.html
  
  Best wishes for the holidays,
  
  Dan Roberts, Director
  MD Support
  director@mdsupport.org
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• importance of low vision rehabilitation
• Posted: 2007-12-14 12:13:55 By dan r
• Dear Friends,
  
  The following article emphasizes the importance of low vision rehabilitation for patients in the intermediate and late stages of AMD:
  
  http://www.biosyntrx.com/Article.php?ArticleID=549
  
  I hope this is news only to those who are not part of our Internet community. The rest of us should be fully aware of the importance of educating ourselves about our own continuum of care. Please take time to review the information at the above link.
  
  Dan Roberts, Director
  MD Support
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• Availability of Avastin
• Posted: 2007-12-13 14:20:29 By Lillian Y
• Dear all,
  
  Do anyone know what will happen to the availability of Avastin for Macular Degeneration when Genentech discontinue to supply Avastin to compounding pharmacies Jan. 1?
  What is FDA's role in this?
  
  Lillian
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• big news for visually impaired veterans
• Posted: 2007-12-10 10:43:16 By dan r
• Dear Friends,
  
  The VA is taking a big step forward by allotting 40 million dollars over the next three years for low vision rehabilitation care for visually impaired vets. If you served in the US armed forces, you will soon be able to take advantage of the expanded program. This means free help with everything from initial evaluation of needs and goals to selection of appropriate optical and non-optical devices.
  
  Please take a few minutes to read more about it and follow the links beginning at:
  
  http://www.mdsupport.org/news.html
  
  Best wishes for the holidays,
  
  Dan Roberts, Director
  MD Support
  director@mdsupport.org
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• Myopic Degeneration Progression
• Posted: 2007-12-08 11:49:04 By Patrick S
• Hi I was diagnosed with Myopic Degeneration last April 07. I just got back from a follow up with my retinal specialist and praise God he didn't see anything that it had progressed (its been about 9 months)
  What is your experience with time of progression? I have heard it differs by case and some even takes years to advance
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• GOOD FOOD for EYES
• Posted: 2007-12-07 20:16:39 By james n
• http://www.school-for-champions.com/health/fleming_food_eye_health.htm
  
  Please eat fruits and vegetables that has vitamins and minerals to imrpove your eye sight and slow your eye degeneration diseases.
  
  Good luck and God Bless.
  
  
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• Vitreous detachments
• Posted: 2007-12-01 14:06:20 By russ r
• PVD's (Posterior vitreous detachments) are often associated with other retinal problems. Severity of this condition can vary from simple floaters, to massive globs and heat wave effects of the vitreous as it changes from gel to liquid as we age. When connected with other problems such as macular degeneration,the daily life can be a nightmare. I speak from much experience. doctors will not touch this condition, saying 'risk is too high' to do vitrectomy, the surgical removal and replacement of the vitreous with a fluid or a gas bubble. Surely the risk is for both the doctor and his patient, not just the patient. Vitreolysis, use of lazers to break up some types of vitreous debris, is not very effective-maybe 30% of the patients have improvement.
  While this is not a direct subject in the FFB list of topics, I wonder why not. A poll, please of those who consider this to be significant to them, and those who have found ways to combat this severe affect on the visual. Thanks in advance for your commentary. Russ R.
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• Hello all
• Posted: 2007-11-25 05:40:57 By Mary S
• Hello one and all , HOpe ou had a nice holiday, so sorry I have not been around too much, with all that was going on here.
  son is in from TX, and said my old pc died from a fried mother board, so we just got the new one hooked up last night.
  still some things to do with it,along with me learning all the new technological soft ware and hard ware,
  bottom line is I am now connected once again.
  so I will be around more after son and family's visit.
  Hope you are all well
  mar
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• stem cells from human skin
• Posted: 2007-11-22 10:34:50 By dan r
• Dear Friends,
  
  You may have recently read that two research groups have published papers describing a method of creating induced pluripoint stem cells by inserting master regulator genes into the chromosomes of human skin cells. The altered cells appear to behave like embryonic stem cells, in that they might be capable of changing into any one of the 220 types of cells in the human body. This could eventually eliminate the need for using human embryos for research. The results were published in Cell by Shinya Yamanaka (Kyoto University and the Gladstone Institute of Cardiovascular Disease in San Francisco), and in Science by James A. Thomson et al (University of Wisconsin).
  
  At first reading, this sounds promising for the macular degeneration community, but there is a problem.
  
  Four genes were used to reprogram the human skin cells, all of which act to turn other genes on or off, essentially reprogramming the cells into which they are introduced. A current drawback, however, is that one of the genes has a 20 percent risk of causing cancer, which means the stem cells created would not be suitable for replacement in people with degenerative cell diseases such as diabetes and macular degeneration. Unless that problem is resolved, the stem cells would be useful only for study outside of the body. More study is needed, also, to determine if the reprogrammed cells are indeed the same as those from embryos. If that can be confirmed, destruction of embryos and donation of human eggs would no longer be necessary for ongoing stem cell research.
  
  For a summary of the past seven years of stem cell research, see:
  
  http://www.mdsupport.org/library/7years.html
  
  Dan Roberts, Director
  MD Support
  www.mdsupport.org
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• Please talk.
• Posted: 2007-11-20 15:53:54 By Debra U
• About anything, how you cope, your experiences, devices you use, brands of vitamins----
  Thank you.
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• Santa Fe Protocol/Russ r
• Posted: 2007-11-13 11:37:45 By Gretchen K
• Dr. Lundgren says he does not treat fluid in the eyes, you would have to look elsewhere to resolve that. He says the visual acuity you have now is the dream goal for most of his patients. DHe wouldn't be able to improve on your current level of acuity. He's not sure why you would have tried microstimulation--doesn't seem necessary.
  
  The Santa Fe Protocol, however, is effective treatment for retinitis pigmentosa, and other diseases of the retina, FYI any readers with retinitis.
  
  General info: aside from visual acuity-- color percepton, contrast sensitivity, amt. of light needed, and distorion all improve with the Santa Fe Protocol, but since the practitioner has no way to measure those reliably, he determines progress by testing with a standard eye chart.
  
  Sounds like you need to find a specialist to treat the fluid in the eye and related conditions for the present time.
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• macular hole from injury
• Posted: 2007-11-11 15:49:55 By Elizabeth S
• My nine year old has an injury involving the cordodial layer and macular layer. He has cordial tears (3) and macular hole. A golf ball at the driving range hit him. He has peripheal vision, but no central vision. The retinist is having us to to surgeon Tuesday 11-13-07 for surgical consultation. Is any one having or had similiar injuries who could give me the best advise. The surgical procedure of vitrectomy is said to be difficult in a child his age - as the vistrous gel is quit thick and would need to be scraped out rather than extracted. Many concerns, but most important, what are the right questions I should be asking.
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• prism glasses
• Posted: 2007-11-11 14:48:56 By brian h
• Hi I was wondering if anyone is familiar with some form of glasses with prisms that they have come up with to help people with macular degeneration, my dad has the wet version for a few years now and really misses his vision, he would just like to be able to fish and or hunt a little, someone mentioned something about some new glasses but we have not been able to locate any information on this, if anyone knows anything about this we would greatly appreciate the info.
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• symptoms of progression
• Posted: 2007-11-11 14:15:59 By russ r
• All
  the internet shows before and after effects of macular degeneration, but none of the interim steps. I'm sure there are phases, before the dull black or gray spot appears. Anyone been explained the indicators of progression, other than with the Amsler grid? EG, what phase is central vision/acuity change, is there a phase where the central vision has movements such as reflecting of light and altered views, darkening spot in the center, or? Might help for those of us in various stages to have a comprehensive list to follow. Comments would be appreciated. thanks. Russ R.
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• Avastin
• Posted: 2007-11-11 11:52:55 By Ann C
• I received my 5th Avastin shot on Thursday. There was still leakage although it was a little better than last time. I go every 6 wks for the visit. My question is this, does the vision continue to deteriorate as long as the leaking is going on? My eye chart tested better this month than last, but I was faced with not getting a shot until after the new year which would have made it almost 8 wks from shot to shot. I was worried about waiting that long that my vision would go downhill and then would be unrecoverable. Does it matter to let the shot go longer as long as the leaking is still going on. I was once again denied coverage with my appeal to the insurance co. I need to gather more ROBUUST data showing that Avastin is a safe and effective treatment for the condition. An organization called SPOC is helping me appeal. Back to the drawing board.
  Ann
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• Antioxidants
• Posted: 2007-11-10 14:04:30 By Andrew V
• Hello, I will be 64 on December 1st. I am curious to know if anybody has had Pycnogenol recommended by their Ophthalmologist. My PC recommended I go to Bascome Palmer for studies on their sophisticated equipment. I showed my antioxidant to my Bascome Palmer doctor and he said: "That is very good but this is better! I want you to take two 50 mg Pycnogenol capsules daily... forever!"
  
  This was two years ago when both my eyes were advanced dry. Since then my left eye has gone wet and I have a new PC who has been administering the Avastin injections to me. On my first visit to my new Opthalmologist I showed him the Pycongenol jar and he became furious. He said to stop taking it immediately, throw my supply in the garbage and take an antioxicant designed for the eyes.
  
  I don't know, but it seems paradoxical: My PC is against Pycnogenol because it is designed for the heart and blood circulation, yet he abides by Avistan that is designed for colon cancer.
  
  Since finishing the the Avistan treatment several months ago I have had no noticeable improvement in my left eye. My doctor says there is "clinical improvement". As for the Pycnogenol versus ARENS I have no way of knowing if one is actually better than the other.
  
  Is anybody out there familiar with Pycnogenol? Doctors? Patients?
  
  Best regards to everybody
  Andrew
  
  
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• November IMDSG presentation online
• Posted: 2007-11-09 19:04:44 By dan r
• Dear Friends,
  
  The November 8 webcast of the International MD Support Group featured Edward J. Huggett, Jr., O.D., Chief of Low Vision Services, St. Luke's Cataract and Laser Institute in Tarpon Springs, Florida. The archived audio/visual recording of "Eye Didn't Know That!" is now available free to the public as an easy-to-understand tour through the eye and fun facts about how it works, leading to a greater appreciation for the process of sight. You can access it from:
  
  http://www.mdsupport.org/nsg.html
  
  I hope you enjoy this outstanding program.
  
  Best wishes,
  
  Dan Roberts, Director
  MD Support
  www.mdsupport.org
  
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• Lucentis injections
• Posted: 2007-11-09 13:33:11 By Shirley B
• Hi, I was wondering if anyone (female) has experienced problems with genital area and also has anyone (male or female) experienced thinning of the hair on the head??? I have been getting injections of Lucentis since Dec. 2006..
  Any information would be helpful...Thanks
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• quantum Warp 10 LED
• Posted: 2007-10-30 20:56:50 By russ r
• Warp 10 was developed by NASA. One of it's applications was repair of retinas damaged by laser beams by the enemy-in the war zones. has anyone had any experiences with this device. It is under clinical trials for retinas pigmentosa, but use for that disease and others other FDA studies could take 4-6 years. We need this now if it is safe and effective. Any experiences?
  
  russ r.
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• important news on Avastin
• Posted: 2007-10-30 12:17:54 By dan r
• Dear Friends,
  
  Genentech senior executives recently met with American Academy of Ophthalmology (AAO) and American Society of Retina Specialists (ASRS) leadership to discuss the company's decision to stop supplying Avastin directly to compounding pharmacies.
  
  I'm pleased to announce that two major agreements were reached:
  
  1) January 1, 2008, rather than November 30, 2007, is now the date on which Genentech will discontinue the supply of Avastin to compounding pharmacies. This allows affected physicians sufficient time to develop and implement transition plans.
  
  2) Genentech will reinstate its supply of Avastin to compounding pharmacies if the FDA gives the company legal and regulatory authorization to do so.
  
  For more details about the delivery process of Avastin and the recent agreements, see Genentech's open letter to the community at:
  
  http://www.gene.com/gene/features/avastin/open-letter.jsp
  
  MD Support recognizes that Genentech has obligations to its investors, but also that the company is concerned for our welfare and maintains the highest integrity in its commitment to us. We appreciate not only the work they have done to bring Lucentis to market, but their willingness to continue in collaboration with the professional community and to keep us all informed.
  
  Best regards,
  
  Dan Roberts, Director
  MD Support
  www.mdsupport.org
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• spontaneous chatroom
• Posted: 2007-10-27 17:00:30 By Debra U
• I found a chatroom called We Move for the parkinson diseased that is always open and people talk back and forth. I wish this chatroom were more utilized for when a person is just lonely.
  Debra Ulm
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• how can we help?
• Posted: 2007-10-26 15:25:33 By dan r
• Dear Friends in the MD Community,
  
  I have spent the last several days in meetings at the American Academy of Optometry in Tampa, Florida. My main purpose in attending this event is to witness firsthand the educational opportunities the Academy offers to our optometrists, who are often on the front line of macular degeneration diagnosis and treatment.
  
  I have found the quality of the presentations high, the content informative and the doctors enthusiastic. I have seen men and women who are serious about their work and who are leaning more and more in the direction of low vision services for seniors like us.
  
  At the same time, I have witnessed frustration in many of them who worry that the profession is not moving fast enough in that direction. As our older population grows and the number of care providers dwindle, they fear that their ability to provide sufficient care will soon begin to be overburdened by the sheer number of people who will need it. A low vision rehabilitation delivery system is in place (see http://www.mdsupport.org/lvrehab.html ), but it can work only if enough care providers are in place to steer it.
  
  Unless a cure for MD is found in the next few years, the demand for treatment will grow tremendously, and the burden on society will become even greater. The annual economic impact of eye care in the US is estimated at 51 billion dollars, not counting the cost of refraction correction. According to James M. Tielsch, PhD (Johns Hopkins Bloomberg School of Public Health), as life expectancy increases, the prevalence of diabetes and eye problems grows, as the availability of treatments outpace primary prevention and (hopefully) as the health care system improves to become available to more people, we can expect the demand for services to flood the system by 2015.
  
  What can we do about it? First, we can slow the onslaught by practicing good prevention measures. It may be too late for us who are already in the system, but we can certainly help spread the word to others who need to understand the risks of poor diet, smoking, insufficient exercise and eye protection. We must do this not just for their sake, but for our own sake, by keeping our quality of care from diminishing as more and more people begin to crowd into the waiting rooms.
  
  Another thing we can do is to encourage our doctors to stress the importance of low vision evaluation and rehabilitation. The easiest way to do that is to print out and give to your caregiver/s the information about the low vision rehab delivery model from:
  
  http://www.mdsupport.org/deliverymodel/description.html
  
  This is important information for both professionals and patients, as we work in partnership toward maintaining an effective continuum of care during the coming years.
  
  Best regards,
  
  Dan Roberts, Director
  Macular Degeneration Support
  web: http://www.mdsupport.org
  email: director@mdsupport.org
  
  
  
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• Wet MD/Infections
• Posted: 2007-10-26 13:00:05 By Walter T
• Hi! I was diagnosed with dry MD approximately 30-35 years ago without any noticeable progression until about 2 years ago. My vision suddenlly became very, very distorted and blurred. I thought my eye glass precriptions needed adjusting, but upon a visit to my Optomologist, he immediately sent me to the RS I am currently seeing. Needless to say, it was wet MD (right eye only) and, the prognosis was injections of Macugen (at first). After the first injection, he suggested switching to Avastin, due to its increased success rate. After the third injection, several more blood vessels burst, causing a "rip' in the macular and a bubble of blood sat in the middle of my macula which was removed with an injection of an air bubble. Ultimately, this caused a permanent "blind" spot, but further Avastin injections stopped the leakage and the eye stabilized; the vision improved considerably. To my misfortune, after about the fifth injection, my left eye became "wet" also. It was agreed to start treatment with Avastin immediately; but, again after the third treatment, a staff infection formed inside my left eye. I was told this was a direct result of the injection and I had to receive an emergency treatment of 7 injections of multiple antibiotics, until the type of infection could be determined. During a period of approximately 4 weeks, I had to place an antibiotic (eye drops) and prednisone (eye drops) into the eye 4 times a day until the infection receded. It did not get any better and, the RS could not see through to the macula, due to the infection and medication, so it was determined that I had to have an operation to remove the infection manually. This was successful and, I eventually recouped. Due to all the trauma this eye had gone through, I have now developed a cataract, which I am scheduled to have removed next week and, I am told that I should regain most (is not all) of my vision. This was one "heck" of a ride!! If there is anyone out there with similar complications, I would really like to know how you "handled" this. Thanks for "Listening".
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• Recently diagnosed
• Posted: 2007-10-25 19:22:04 By James B
• I was recently diagnosed with a form of macular dystrophy. I go to a specialist tomorrow to find out what that really means. The last doctor didn't want to go into details and referred my questions to the specialist. It's been a month or so of waiting to find out. I am trying to find out more information, but it's rather had without much information. They have found drusen in both eyes, but I have no other symptoms. I guess I am looking for more information or more of a starting point. What I have found seems to be minimal. Any suggestions would be appreciated.
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• activities and devices
• Posted: 2007-10-23 17:03:26 By Debra U
• My vision is already affected with blurriness. I wonder what activities AMD sufferers engage in especially at my level and what devices are most helpful.
  
  Debra Ulm
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