Posted by Lynn on July 05, 2000 at 23:04:46:

Hi to everyone. I have been reading this board for the past 3 days and have obtained a wealth of information from all of you. My husband went to the ophthamologist on Friday 6/30 for what he was sure would be a diagnosis of a detached retina which would need surgery. Five hours and many diagnostic tests produced the shocking words MD...diffused bleeding, can't find the vessel which is leaking...very limited treatment options for wet MD. This diagnosis was made by a retina specialist at Univ of Wi who had the bedside manner of a dimwit. We are having a second opinion on 7/6 by another member of the vitreous society here in Madison. We of course are hoping for a misdiagnosis but expecting the worst. This leads to several questions for all of you...it seems that much of the cutting edge research is being done at Johns Hopkins. How difficult is it to get an immediate appt there? Are there any other institutions anywhere in the US that you would highly recommend? How do we check the credentials of the physicians? Your suggestions are deeply appreciated. Posted by Tim on July 08, 2000 at 09:00:45:
In Reply to: Finding top docs and their departments posted by Lynn on July 05, 2000 at 23:04:46:
Sorry to hear your news. I am 36 and have wet MD. My local Dr in Syracuse arranged for an appointment for me a JH. I have family members which are high skilled in the medical fields and all high recommended that I visit JH. They were accomodating but it is a large center and they see a lot of people. So bring your patience. I was there for 7 hours. Appointments can be made at 410-955-3518. I would call ASAP. I do not think that you need a referral from another Dr.
good luck
Posted by barb on August 01, 2000 at 07:23:53:
In Reply to: Re: Finding top docs and their departments posted by Tim on July 08, 2000 at 09:00:45:
Sorry to hear your news. I am 36 and have wet MD. My local Dr in Syracuse arranged for an appointment for me a JH. I have family members which are high skilled in the medical fields and all high recommended that I visit JH. They were accomodating but it is a large center and they see a lot of people. So bring your patience. I was there for 7 hours. Appointments can be made at 410-955-3518. I would call ASAP. I do not think that you need a referral from another Dr.
good luck
tim, i am 33 and MAYBE dx w/ md? dr not sure due to my age, could you please e-mail me and give me details on your symptoms, i am so very stressed at the lack of knowledge i am receiving. thank you barb
Posted by Judy Rose on July 06, 2000 at 19:07:10:

In Reply to: Finding top docs and their departments posted by Lynn on July 05, 2000 at 23:04:46:
Hi to everyone. I have been reading this board for the past 3 days and have obtained a wealth of information from all of you. My husband went to the ophthamologist on Friday 6/30 for what he was sure would be a diagnosis of a detached retina which would need surgery. Five hours and many diagnostic tests produced the shocking words MD...diffused bleeding, can't find the vessel which is leaking...very limited treatment options for wet MD. This diagnosis was made by a retina specialist at Univ of Wi who had the bedside manner of a dimwit. We are having a second opinion on 7/6 by another member of the vitreous society here in Madison. We of course are hoping for a misdiagnosis but expecting the worst. This leads to several questions for all of you...it seems that much of the cutting edge research is being done at Johns Hopkins. How difficult is it to get an immediate appt there? Are there any other institutions anywhere in the US that you would highly recommend? How do we check the credentials of the physicians? Your suggestions are deeply appreciated.
Posted by Joe on July 06, 2000 at 09:25:25:
In Reply to: Finding top docs and their departments posted by Lynn on July 05, 2000 at 23:04:46:
Hi to everyone. I have been reading this board for the past 3 days and have obtained a wealth of information from all of you. My husband went to the ophthamologist on Friday 6/30 for what he was sure would be a diagnosis of a detached retina which would need surgery. Five hours and many diagnostic tests produced the shocking words MD...diffused bleeding, can't find the vessel which is leaking...very limited treatment options for wet MD. This diagnosis was made by a retina specialist at Univ of Wi who had the bedside manner of a dimwit. We are having a second opinion on 7/6 by another member of the vitreous society here in Madison. We of course are hoping for a misdiagnosis but expecting the worst. This leads to several questions for all of you...it seems that much of the cutting edge research is being done at Johns Hopkins. How difficult is it to get an immediate appt there? Are there any other institutions anywhere in the US that you would highly recommend? How do we check the credentials of the physicians? Your suggestions are deeply appreciated.
I think the Wills Eye Hospital in Philly and Johns Hopkins in Baltimore are usually regarded as the "best" eye care hospitals in the U.S., if not in the world. You might want to try them. Though some hospitals in Boston and New York City might be close seconds. FYI. Joe
Posted by Judy Prevost on July 06, 2000 at 08:52:56:

In Reply to: Finding top docs and their departments posted by Lynn on July 05, 2000 at 23:04:46:
Dear Lynn,
Please visit the MD Support web site, linked below, where you will find a great deal of information pertaining to retinal degeneration.
On the Centers page you will find listings of reputable ophthalmological institutions. In the Library you can read articles about current research and clinical trials being held for the treatment of the "occult" (hidden leaking vessels) form of MD.
Here is a link from the Vitreous, Retina, and Macula Society. You will find a listing of certified retina specialists in the U.S.A., and you can look for one in your area.
http://www.vitreoussociety.org/members/directry.htm
It is always a good idea to have a second opinion when first diagnosed with MD. It is important to find a doctor you can communicate with, and there is no reason to put up with anything less.
It is a shock to hear the words MD for the first time, but it is not the end of the world. There are many of us with this eye disease, and with time we have learned coping strategies through reaching out to others.
Presently there is no cure for MD, but there are treatments available for temporary containment of the degeneration. Try and keep in mind the old saying "Prepare for the worst, but expect the best."
Good luck with your searches, and please give my warmest wishes to your husband.
Best regards,
Judy Prevost, Co-Owner MDList
MD Support
Posted by Sally G. on July 06, 2000 at 08:48:24:

In Reply to: Finding top docs and their departments posted by Lynn on July 05, 2000 at 23:04:46:

: Hi to everyone. I have been reading this board for the past 3 days and have obtained a wealth of information from all of you. My husband went to the ophthamologist on Friday 6/30 for what he was sure would be a diagnosis of a detached retina which would need surgery. Five hours and many diagnostic tests produced the shocking words MD...diffused bleeding, can't find the vessel which is leaking...very limited treatment options for wet MD. This diagnosis was made by a retina specialist at Univ of Wi who had the bedside manner of a dimwit. We are having a second opinion on 7/6 by another member of the vitreous society here in Madison. We of course are hoping for a misdiagnosis but expecting the worst. This leads to several questions for all of you...it seems that much of the cutting edge research is being done at Johns Hopkins. How difficult is it to get an immediate appt there? Are there any other institutions anywhere in the US that you would highly recommend? How do we check the credentials of the physicians? Your suggestions are deeply appreciated.
I agree with you. This AMDF web site is excellent! As you know, there are many fine hospitals in the U.S. Wills Eye Hospital in Philadelphia is one of the best for eye problems. Johns Hopkins in Baltimore is another. Other cities well-known for the excellence of their hospitals are Boston, New York and Houston. You can find names and addresses and phone numbers for all these cities and hospitals right here on this AMDF web site. Go to the HOME page. Click on Eye Care Centers. Then go to the state listing where those cities and hospitals are located. Then call and try to make an appointment. There are also three eye care centers listed for Madison, Wisconsin and one more in Milwaukee, WI. Best of luck in your search. My best wishes to you and your husband. Tell your friends about the AMDF web site. (I do.) And visit often. Your friend, Sally G.
Posted by Peter Wells on July 06, 2000 at 08:59:05:
In Reply to: Macular Degeneration & Finding top doctors and their departments posted by Sally G. on July 06, 2000 at 08:48:24:
Hi to everyone. I have been reading this board for the past 3 days and have obtained a wealth of information from all of you. My husband went to the ophthamologist on Friday 6/30 for what he was sure would be a diagnosis of a detached retina which would need surgery. Five hours and many diagnostic tests produced the shocking words MD...diffused bleeding, can't find the vessel which is leaking...very limited treatment options for wet MD. This diagnosis was made by a retina specialist at Univ of Wi who had the bedside manner of a dimwit. We are having a second opinion on 7/6 by another member of the vitreous society here in Madison. We of course are hoping for a misdiagnosis but expecting the worst. This leads to several questions for all of you...it seems that much of the cutting edge research is being done at Johns Hopkins. How difficult is it to get an immediate appt there? Are there any other institutions anywhere in the US that you would highly recommend? How do we check the credentials of the physicians? Your suggestions are deeply appreciated.
I agree with you. This AMDF web site is excellent! As you know, there are many fine hospitals in the U.S. Wills Eye Hospital in Philadelphia is one of the best for eye problems. Johns Hopkins in Baltimore is another. Other cities well-known for the excellence of their hospitals are Boston, New York and Houston. You can find names and addresses and phone numbers for all these cities and hospitals right here on this AMDF web site. Go to the HOME page. Click on Eye Care Centers. Then go to the state listing where those cities and hospitals are located. Then call and try to make an appointment. There are also three eye care centers listed for Madison, Wisconsin and one more in Milwaukee, WI. Best of luck in your search. My best wishes to you and your husband. Tell your friends about the AMDF web site. (I do.) And visit often. Your friend, Sally G.
I endorse everything Sally wrote in her message to you Lynn about top doctors and macular degeneration. I would add that Cleveland and Chicago are also noted for their great hospitals. For two other "name" hospitals, you might want to check out the Washington University School of Medicine in St. Louis, MO. and the Mayo Clinic in Rochester, MN. Again, you can find listings and addresses for all these cities on this very helpful AMDF web site by going to the HOME page, then the EYE CARE CENTERS button, then to the state name. Keep the faith. With time, we will find a cure for macular degeneration. The sooner the better. Best of luck to you and your husband. Peter Wells