WHAT SHOULD I ASK MY DOCTOR?
by Dan Roberts: Owner, MDList
We would like to thank Dan Roberts for permission to use this
article, and highly recommend his site
Macular Degeneration Support.
One of the most common problems encountered by people who are first diagnosed
with macular degeneration is what to ask the doctor. The news usually takes us
by surprise, and we may have never even heard of the disease before.
To compound our confusion, many doctors have neither the time nor the
inclination to give information without prompting. This makes it our
responsibility to learn as much as possible, and then to return with specific
questions so that we can learn how to handle our condition, both emotionally
and physically.
Good doctors are busy. They cannot afford to spend an inordinate amount of time
with us, but they will take the time to answer our questions if we are
well-prepared and concise. That is the purpose of this web page. It will first
explain the basics to you (be sure to bookmark this page before following the
links), and then you can print it out and take it to your next appointment.
Do not expect your doctor to provide a great deal of emotional support. This is
not necessarily in the line of duty. Instead, expect a courteous professional
who knows how to take care of your physical needs and who is also familiar
enough with the resources to direct you to other support systems which you may
require. Above all, no matter what answers you hear, remain positive. Most
things will never be as good as you hope, but neither will most things be as
bad you think.
Questions
1. DO I HAVE WET MD OR DRY MD?
WET MD is caused by the formation of new blood vessels (neovascularization)
which leak into the layers of the retina, causing separation of the membranes
and eventual degeneration of the light-sensing cells of the macula (the center
of vision). DRY MD is caused by degeneration of the retinal cells for no
apparant reason other than age, and this can be influenced by genetics.
Insufficient nutrition, exposure to ultraviolet rays, and smoking are also
thought to be contributing factors. For more information, read "What is Macular
Degeneration?" on the MD Support web site.
Answer:
2. ARE DRUSEN PRESENT IN MY EYES?
Drusen is thought to be undigested waste products from the retinal pigment
epithelium (RPE) cells.
Answer:
3. IF I HAVE DRUSEN, IS IT "HARD" OR "SOFT?"
"Soft" drusen can cause separation of the retina, resulting in vision loss.
Answer:
4. WILL A FLOURESCEIN ANGIOGRAM BE DONE?
This is the procedure of injecting a dye into the blood stream so that
photographs can be taken of the blood vessels in the retina.
Answer:
5. IS LASER SURGERY AN OPTION FOR ME?
Laser photocoagulation is a method for destruction and sealing of leaking blood
vessels, and it is the only proven treatment currently available for the wet
form of early-onset MD. (This is not an option for the dry form.) Personal
accounts of both this procedure and the flourescein angiogram may be read about
on the MD Support web site in personal accounts titled "Losing Sight," "Brian's
Eye Story," and "There Is Life After MD."
Answer:
6. AM I A CANDIDATE FOR RETINAL TRANSLOCATION SURGERY, PHOTODYNAMIC
THERAPY, OR SUBMACULAR SURGERY?
All are still experimental, but have shown positive results so far. More
information on each may be found in "The Library" and in "The Clinic" on the MD
Support web site.
Answer:
7. SHOULD I CONSIDER MICROCURRENT STIMULATION THERAPY OR RHEOTHERAPY?
Both are experimental and controversial, but are being marketed as having had
some success. More information may be found in "The Library" and in "The Clinic"
on the MD Support web site.
Answer:
8. WHERE CAN I GO LOCALLY TO RECEIVE ASSISTANCE IN THE USE OF LOW-VISION
AIDS IF AND WHEN IT BECOMES NECESSARY?
Answer:
9. HOW OFTEN SHOULD I BE EVALUATED?
Normally, the doctor will want to see you approximately every six months unless
noticeable changes occur in your vision. The purpose of your appointments is
principally to monitor and record your progress, not to offer treatment of any
kind.
Answer:
10. WOULD YOU MIND IF I DECIDE TO SEEK ANOTHER OPINION?
Your doctor should be agreeable to this and should be willing to forward copies
of your files to any other ophthalmologist of your choice. This is expected and
respected by any professional who is truly concerned about your health and
well-being, so do not hesitate to ask.
Answer:
Questions Which Your Doctor Cannot Answer
WILL I LOSE ALL OF MY CENTRAL VISION?
Each person is different as to how long it takes for the cells to degenerate.
MD is a progressive disease, but stabilization for months or years can
drastically slow down its progression. Therefore, complete loss of central
vision could take anywhere from months (in some wet MD cases with no treatment)
to years, or degeneration may never reach its full potential if your life span
is shorter than the course of the disease.
WHEN ARE THEY GOING TO FIND A CURE?
There is a great deal of research going on in many areas, and there is reason to
hope for a cure within the next decade. Any more accurate prediction than that
is purely guesswork. The best you can do right now is to practice good
nutritional habits, avoid smoking, protect your eyes from ultraviolet rays, and
stay informed about possible treatments. Then, when the cure does come, you will
have done the best you can to take advantage of it.
