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• AMD-dry type
• Posted: 2007-08-23 07:42:04 By Eileen B
• Someone very close to me is suffering from Age Related Macular Degeneration of the dry type. This is a disease that effects the retina of the eye and causes blindness. At the moment she has reached the point where she has only peripheral vision and it is getting worse.
  
  There is laser treatment out there for the AMD wet type but not for the dry type.
  
  Apparently Dr. David Wong, Professor of Ophthalmology at Royal Liverpool University Hospital performs ‘macular relocation surgery’ for AMD dry type, but they say is a complex surgery and prone to complications.
  
  I am finding it hard to fish off the net specific information on how one qualifies for this surgery, the cost, what the success rates are, and if there are any people I can talk with who have had the surgery performed on them.
  
  
  I would be ever so grateful if anyone can offer me more information how I can help this person who I love dearly find a way to treat this disease.
  
  Many Thanks,
  
  Eileen
  contact@ebnefsi.com
  

• Re: AMD-dry type
• Posted: 2007-08-23 09:36:11 By Mary S
• Eileen,
  I agree with you this disease is devistating to all who have it.And yes
  what you stated is correct. At this time there are no treatments for Dry md.
  however one of the eye drops, either othera's or the targen was also testing their drop with dry md.
  You may want to look into those trials for your friend.
  I have both wet in one eye and dry in the other eye.Dry can go to wet, wet being the one were the most vision loss occurs. I hope that your friend is seeing an RS on a regular basis.
  
  Also your friend may benefit from a Low vision specialist.
  There are some experimental surgical proceedures for dry md, one impants a telescope like device.
  
  Are you and yur friend in the USA?
  Best wishes Mary

• Re: Re: AMD-dry type
• Posted: 2007-08-23 09:49:43 By Eileen B
• Dear Mary,
  
  Thank you very much for this information.
  
  She is not based in the US but in Greece, so finding the treatments you discribe in Athens may be hard but we will look in to it.
  
  I have already gone through the mdsupport site you reccomend which I found also very useful.
  
  Thank you very much again!
  
  Eileen

• Re: Re: AMD-dry type
• Posted: 2007-10-30 21:38:25 By russ r
• Mary S
  
  You and I communicated earlier this year. I've been battling my eye problems, and really have not had much success. Now I'm at a dry armd stage where the central vision is slightly distorted. doctors have said not to worry-it's just the vitreous hanging in front of the macula. called a veil. I am skeptical because I've had so many stories told me by the eye md's. lost a lot of trust with them. particularly when they down play any condition that a patient has. most every md does that, thinking the patient will be salved and some divine intervention will preserve their vision. not being truthful is criminal to me. we all have lives and hope to have plans for the future. Best wishes Mary S. Your well informed emails are a great help to me and I'm sure to many others. Russ r.

• Re: Re: Re: AMD-dry type
• Posted: 2007-10-31 18:26:39 By Mary S
• Hello Russ,
  good to hear from you.
  Happy Halloween and all that stuff.
  
  just got in from the old work place, taking a mninute to try to check some mail I did not get to yesterday and came across your message.
  
  have not been around cyber world much lately. pc problems, and renovations to my home right now.
  
  Getting to the the eye docs.And Truth of the matter with the disease:
  first of all,
  having dry md is a whole lot better than wet md.
  The wet is more devistating, despite the
  " Treatments" that are out there for it.( the wet)
  
  The dry continues on to progress and more vision loss and distortion will occur as time marches on.
  
  With the wet , even with the development of some of the newer treatments, the disease will continue to progress. The Hope with those treatments is it will slow down that progression and improve some acuity for certain people at an earlier stage that do not have perment damage just yet.
  
  As far as the eye docs and their stories.
  Well this is how I see it in most cases.
  Most doctors want to help their patients.
  they try their best to hold out some sort of hope for them and their condition and try their best to keep the patient's condition from slideing into the places of no return.
  
  They get excited when they see that soemthing helps at the cellular level, so even if we do not ""see ""the difference or note improvement in our vision, there may be a change for the better when they are looking at the results on our FA's or OCT's and so on.
  
  For us, what is important is the Visual aspect, how well we see, if we can maintain independence, drive, work , see our grandchildren and so on.
  this is how we measure success, we do not measure the cells...or changes in the cellular structures.
  
  It is the Basics, of vision and visual acuity, independent function, and being able to continue on in a productive way with our lives that ranks the most importance.
  
  So there is this gap that makes little sense to the average patient, and when he/she does not see improvement in the literal sense, the upset and emotions of loosing sight kick in and take over.
  
  The eye and all its structures is a very complicated body part. the cells and tiny minute functioning parts are difficult to work with and need specialized tools usual under a microscope, when they are used to do surgery or proceedures.
  
  I guess what I am saying is.
  Ido not think that RS docs are trying to tell us stories, there brains are working on the molecular and cellular end of it all, while we are working on the basic function of " jsut let me see well enougt to do what i need to do"
  
  This is why, while it is important to have hope and promise for the future with treatments, it is also important to be realistic in what benefits those treaments may hold for us, and the fact that they are a treatment, not a cure.
  So the disease process continues, cells die and our sight still gets to be less and less as time goes on.
  
  Until a Cure is found or the reason why md happens, so that they can work on a cure, all we can hope for is the slowing down of the disease process. If we go from wet to dry this is good. if we stay dry and do not turn wet in one eye, this is good.
  
  It is these small things that we hold onto for a smigen of hope that we will retain "Our vision" or as much of it as possible for as long as possible. And it is these small things that keep us hoping that the cure will happen in our life time,before our vision is gone, and the cells are destroyed to the point of no return.
  
  Hang in there Russ, I just read somewere not long ago, that they are working on a sort of bionic eye. not perfected yet, but perhaps it will help some of us down the road.
  
  In the meantime , live for today. take in all you can and enjoy all you can. As no one knows when the eyes will go. or life will end . we could be talking and keel over with a heart problem and zip were gone.
  
  So at times I think it is best to push this disease this chronic disease to the back of our mind and just go and live each day as we would have, if it were not there,only maybe a smigen better. We take in all we can, and try to enjoy all we can for now.
  work as hard as we can and so on.
  There are NO Promises in life, NO guarantees, except one....you will eventually leave this world. So make the best of what you can while you can.
  
  I have found that in realy living, I am much more free from the chains of this disease and its worry,than I was when I first found out I had it.\
  I can spend all my energy looking for more and more treatments, or I can spend my energy in living.
  I choose to do the living.
  well this is a book so I am going to close this chapter.
  I hope that all goes well for you, and I think I would go and get a second opinion on that veil from a teaching hospital were they have a good eye center and good RS docs, just to see what they have to say.
  then go from there.
  keep in touch.
  mar
  
  
  
  
  

• Re: Re: Re: Re: AMD-dry type
• Posted: 2007-10-31 18:44:51 By russ r
• Mar
  
  Thanks for the good words. I am always looking for solutions rather than peace for the moment. Have a hard time adjusting. I truly envy you for your fortitude to go on as you have. A lot more 'grown up' than yours truly, I must admit. Lets keep in touch. My email address remains as follows: Rrusrjr2@aol.com
  
  Russ r.

• Re: Re: Re: Re: Re: AMD-dry type
• Posted: 2007-10-31 19:36:29 By Mary S
• Rus,
  We all have those hard times with the adjustment issues.
  When things get to be alot for me, I give myself 3 days to feel it , get over it, and get on with life.
  it seems to help.
  
  Loosing ones vision is a LOSS and we go thru a grieving process. Getting thru the process is different for all of us, and because this disease is chronic, it can happen more than once. however when you can recognize that this is what is going on, and learn how to help your self thru that process the second and third and 4th time gets a bit easier.
  
  I am not saying that one should not look for solutions, but rather that the solutions aspect is best not to consume all of our time and our lives.
  WE can be a victim to this eye disease, or we can take charge and be in control by facing it and moving on with the changes that happen along the way.
  
  Ever read " who moved my cheese"
  Great book about change and how we handle it based on our life experiences and our personalities. I highly recomend it to anyone who has a Chronic illness/disease.
  mar

• Re: Re: Re: Re: AMD-dry type
• Posted: 2007-11-06 16:57:52 By Shirley B
• Subject: Seeing Eye Cat...
  
  
  
  
  Hi mary, I have not checked on this message board in about a month and was wondering how you are. I would hate to lose touch with you.
  
  Terri
  
  

• Re: Re: Re: Re: Re: AMD-dry type
• Posted: 2007-11-06 21:57:05 By Mary S
• Terri,
  Good to hear from you.
  hope your well.
  Have been very busy, between work( my job) and living with renovations being done to my home.
  
  Tired in fact, very-very tired, and can not wait until I reach a place were they are not in my house and I can actually have a break/rest
  
  These things being done were much needed. I had major bathroom problems, had to have it all gutted and a totaly new bathroom installed. it took them over 5 weeks to do that part.
  I still have not been able to bring my dog home, as I am waiting for the debrie to be cleared from the back yard.
  I just got back into my house this past week.
  Now for the big but smaller things to also be finished, or at a place were they are livable until after the holidays.
  
  So to make this long story short.
  I have not been around on the boards, between the home improvemt issues and having pc problems.
  In fact I was not living at home for 5 weeks, I was at a relatives house.
  
  I will not be around too much until after the holidays I am afraid, but I will pop in here from time to time or when a message shows to be posted to me , via e-mail.
  take care.
  best wishes.
  mar

• Re: Re: Re: Re: Re: Re: AMD-dry type
• Posted: 2007-11-07 18:55:52 By Shirley B
• Hope you are able to get into your newly remodeled home soon--that would drive me nuts to not be in my own home for that long! Take care and let me know when you are back home.
  Luv,
  Terri

• Re: Re: Re: AMD-dry type
• Posted: 2007-10-31 18:28:30 By Mary S
• Hello Russ,
  good to hear from you.
  Happy Halloween and all that stuff.
  
  just got in from the old work place, taking a mninute to try to check some mail I did not get to yesterday and came across your message.
  
  have not been around cyber world much lately. pc problems, and renovations to my home right now.
  
  Getting to the the eye docs.And Truth of the matter with the disease:
  first of all,
  having dry md is a whole lot better than wet md.
  The wet is more devistating, despite the
  " Treatments" that are out there for it.( the wet)
  
  The dry continues on to progress and more vision loss and distortion will occur as time marches on.
  
  With the wet , even with the development of some of the newer treatments, the disease will continue to progress. The Hope with those treatments is it will slow down that progression and improve some acuity for certain people at an earlier stage that do not have perment damage just yet.
  
  As far as the eye docs and their stories.
  Well this is how I see it in most cases.
  Most doctors want to help their patients.
  they try their best to hold out some sort of hope for them and their condition and try their best to keep the patient's condition from slideing into the places of no return.
  
  They get excited when they see that soemthing helps at the cellular level, so even if we do not ""see ""the difference or note improvement in our vision, there may be a change for the better when they are looking at the results on our FA's or OCT's and so on.
  
  For us, what is important is the Visual aspect, how well we see, if we can maintain independence, drive, work , see our grandchildren and so on.
  this is how we measure success, we do not measure the cells...or changes in the cellular structures.
  
  It is the Basics, of vision and visual acuity, independent function, and being able to continue on in a productive way with our lives that ranks the most importance.
  
  So there is this gap that makes little sense to the average patient, and when he/she does not see improvement in the literal sense, the upset and emotions of loosing sight kick in and take over.
  
  The eye and all its structures is a very complicated body part. the cells and tiny minute functioning parts are difficult to work with and need specialized tools usual under a microscope, when they are used to do surgery or proceedures.
  
  I guess what I am saying is.
  Ido not think that RS docs are trying to tell us stories, there brains are working on the molecular and cellular end of it all, while we are working on the basic function of " jsut let me see well enougt to do what i need to do"
  
  This is why, while it is important to have hope and promise for the future with treatments, it is also important to be realistic in what benefits those treaments may hold for us, and the fact that they are a treatment, not a cure.
  So the disease process continues, cells die and our sight still gets to be less and less as time goes on.
  
  Until a Cure is found or the reason why md happens, so that they can work on a cure, all we can hope for is the slowing down of the disease process. If we go from wet to dry this is good. if we stay dry and do not turn wet in one eye, this is good.
  
  It is these small things that we hold onto for a smigen of hope that we will retain "Our vision" or as much of it as possible for as long as possible. And it is these small things that keep us hoping that the cure will happen in our life time,before our vision is gone, and the cells are destroyed to the point of no return.
  
  Hang in there Russ, I just read somewere not long ago, that they are working on a sort of bionic eye. not perfected yet, but perhaps it will help some of us down the road.
  
  In the meantime , live for today. take in all you can and enjoy all you can. As no one knows when the eyes will go. or life will end . we could be talking and keel over with a heart problem and zip were gone.
  
  So at times I think it is best to push this disease this chronic disease to the back of our mind and just go and live each day as we would have, if it were not there,only maybe a smigen better. We take in all we can, and try to enjoy all we can for now.
  work as hard as we can and so on.
  There are NO Promises in life, NO guarantees, except one....you will eventually leave this world. So make the best of what you can while you can.
  
  I have found that in realy living, I am much more free from the chains of this disease and its worry,than I was when I first found out I had it.\
  I can spend all my energy looking for more and more treatments, or I can spend my energy in living.
  I choose to do the living.
  well this is a book so I am going to close this chapter.
  I hope that all goes well for you, and I think I would go and get a second opinion on that veil from a teaching hospital were they have a good eye center and good RS docs, just to see what they have to say.
  then go from there.
  keep in touch.
  mar
  
  
  
  
  

• Re: AMD-dry type
• Posted: 2007-08-23 09:39:31 By Mary S
• You can also go to
  http://www.mdsupport.org
  
  Dan Roberts has somewhere in his files, information on macular relocation surgery
  mar