Dear Cyndy,

At noon today, July 18, Dr. Peter Lou returned my
telephone call. He was, as always, very cordial.
I had much difficulty in understanding him. I had
to ask him with embarrassing frequency to repeat what
he had just said, probably because my hearing is poor,
the rain has infiltrated the local telephone circuits
and/or the inexpensive long distance lines to which I
subscribe are functionally inferior.

In any event, I understood:

a) that Peter Lou and I agree the fluorescein angiography
is essential, its risks are so slight that they should not
be considered, and you should go ahead and accept fluorescein
angiography on Wednesday.

b) Peter Lou told me that in his practice intravitreal injection
has completely replaced laser photocoagulation of wet macular
degeneration. His schedule is to give 6 injections at monthly
intervals; thereafter to reexamine the patient every three months,
and then to repeat injections as required to control the disease.

[Because the issue is remote from our present concerns, I did not
quiz Peter about the incidence or schedule of late retreatment.
It's obviously a difficult question vulnerable to (self-)deception:
How long, how intensively should one pursue a course of treatment
which has (initially) failed. Let's hope it's a question we don't
have to confront.]

The timing of the initial injection is critical. If one waits
"too long" irreversible macular changes occur which do not respond
to treatment. I asked Peter whether it would be reasonable to
delay treatment for a week while soliciting second opinions about
the fluorescein angiography. He paused for a moment. Then he said 
such a one week delay would be reasonable.

[The patient who delays the treatment for even a week, puts the
surgeon at a psychological, social and perhaps even legal advantage;
because treatment failure can then be construed as a possible
consequence of the delay: "If only we had done it right away ..."]

The "only complication" of intravitreal injection, Peter Lou said,
is endophthalmitis which he said had an incidence of one tenth of
one percent. (1/1000) Endophthalmitis is usually deemed to be
bacterial in origin, but may also be the inflammatory consequence
of a foreign body reaction. It frequently, but not always, results
in total blindness in the affected eye. It is almost certain that
there are other "complications" such as dislocation of a marginally
secure intraocular lens, retinal breaks in consequence of asymmetric
stresses on the retina incident to injection; but since these
complications would not be legally defensible, it would be naive
to assume them to be admitted or described as complications.
Their incidence therefore must remain unknown.

Peter Lou explained that the intravitreal injections were ineffective
for the visual impairment that accompanies "dry" macular degeneration,
ineffective also for the retinal atrophy that is the endstage of wet
macular degeneration and intraretinal hemorrhage.  He made a blanket
statement that the intravitreal injections were uniformly successful
in ameliorating "wet" macular degeneration. I did not press him with
the apparent contradiction that "retreatment" at 9 or 12 months might
be necessary.

Dr. Lou confirmed my surmise that fluorescein angiography with 
photographic film has been largely replaced with digital computer
techniques. I infer that diagnoses are made from "hard copy" 
printouts of digitally stored images, and that it is such printouts
which are given to patients who request copies of their fluorescein
angiograms. Dr. Lou said if such a printout were provided, he would
be willing and able to give an opinion as to the treatment, if any,
which he would recommend. You may mail a copies of the fluorescein
angiograms to him directly, if you wish. You may also telephone his
office and ask to speak to him. Peter L. Lou MD., 10 Hawthorne Place
Suite 106., Boston MA, 02114-2336. (617) 523-0955. 

I was in the surgery business long enough to have learned that if I
was not totally corrupt, I must have convinced myself that what I am
doing for (or to) my patient is of benefit to him or her. The awareness
of history, the understanding that from the origin of surgery to the 
present day,the imperfection of surgical procedures has been 
systemnatically denied, is an intellectual luxury which as a surgeon 
I cannot afford. To be a successful surgeon, I must be able to forget 
that what I did 10 or 20years ago, didn't work nearly as well as my 
patients and I had been led to believe. With respect to argon laser 
photocoagulation for macular degeneration, purformed zealously for
decades before being superseded by intravitreal injection, there was 
some years ago a large multi-center, federally financed study, which 
purported to show that the visual acuity of treated patients was two 
or three Snellen chart lines better than the visual acuity of untreated 
patients, but only for a period of two or three years. After five years, 
the visual function of treated patients was indistinguishable from the 
visual function of those who had received no treatment.

To the best of my knowledge, not yet having performed the obvious
computer search, no such study to demonstrate the effectiveness,
if any, of intravitreal injection has been published. Meanwhile the
interests of all concerned, patients who want hope, surgeons who
need work, and drug companies who need profits, coincide. All of
them cultivate the conviction that intravitreal injection will
ameliorate macular degeneration, but no one really knows.

My respectful suggestion to you is as follows:
a) Keep the Wednesday appointment with the retina surgeon.
b) Permit fluorescein angiography.
c) Consider carefully whether you wish to disclose the
diagnosis of "Henoch Schoenlein Purpura" with which you
have been tagged, or the medical history on which it is
based, inasmuch as spurious medico-legal considerations
might generate much fruitless medical activity and lead
to an uncomfortably long delay of the fluorescein angiography.
d) Prepare your mind  to subject the surgeon to an oral
examination (like any Ph.D. candidate) when and if he
recommends intravitreal injection. Since he needs to obtain
your "informed consent", he is required to give you an
opportunity to ask questions. If he refuses to talk with
you personally, but arranges for an associate to discharge
this obligation, he may still be a good technician, -
Margrit's herniorrhaphy surgeon never talked with her
before or after the operation. If he had cared for her,
he might have advised her (as did Klemens and I) against the
Caribbean cruise after which she died, and she would probably
have taken his advice - , you may choose not to trust the
judgment of a man who is too busy to explain to you in person
how the proposed operation is to your benefit.

This should be your chance to ask questions: What proportion
(percentage) of patients like myself who now have visual acuity
of 20/200 in the affected eye who ACCEPT the injections will
regain acuity to 20/70, 20/40, 20/20 within one year.  What
visual acuity can 90 percent of patients in my situation expect
after 1,2,3,4,6 months, a) if they ACCEPT and b) if they REFUSE
the injections. What are the criteria for additional treatment
after 6 months, and what percentage of patients will require it.
The surgeon's answers to these questions will tell you something
about the disease, will tell you even more about the surgeon.

In my own practice I have long had a policy of _never_ requiring
an immediate decision, of never "putting a patient "on the spot."
I urge my patients "to think about it", to talk it over with the
family, and although I don't use these words, to meditate, "to sleep
on it". I suggest that in the morning, when they awake, they may know
exactly what they want to do or not to do. In the situation we
anticipate, that the surgeon will be ready with the syringe for
an immediate injection, it seems to me eminently reasonable to
ask for permission to go outside for 15 or 30 minutes "to talk
it over with my husband," conceivably even to talk it over with
me by telephone, - or to return for the injection a day or two later.
The surgeon's response to such requests will tell you a lot about
the character of the man who is asking your permission to plunge
a needle into your eye.

Having written in such detail, permit me to say that from what little
I have learned about your psyche in the course of our prolific
correspondence, I believe you will be happier if you consent to
having an injection on Wednesday, if it is recommended. The alternative
would cause a period of uncertainty during which you might be very
uncomfortable. To the best of my understanding, which you should confirm
with the surgeon before treatment is begun, accepting one injection
does not commit you to additional treatment. The initial injection
should not make subsequent injections mandatory.

You have my telephone number, and you should feel free to telephone
me at any time. I apologize for any additional unnecessary anxiety
which my comments might have caused you.

Jochen