A dozen people attended the July 13, 2019, meeting of this group. One had a first DMEK the week prior to the meeting. Two others have not had any surgeries. As no speaker was scheduled, each person around the long conference table introduced himself/herself with his or her name and brief version of his/her corneal dystrophy journey with any updates.
New people were invited to tell us what brought them to our meeting. Newbies were encouraged to ask questions.
One wanted to know how long to wait after diagnosis to have a transplant. Everyone among the experienced members replied that this is highly individual and that symptoms and lifestyle are the patients’ guide for that decision.
Another asked about the time to useful vision after a transplant. Again, the response was filled with individual experiences and concluded that each is an individual case and will vary.
Someone informed the group that she had begun having diminished and distorted vision years after her DSAEK surgery. Examination revealed that at some point she had experienced a retinal detachment. Apparently the expected symptoms of flashes and floaters did not materialize, and she was unaware that this had happened. The retina had healed spontaneously but left a scarred line in her vision. A retina specialist surgically repaired the damage with laser, and in doing so, had accidentally created a hole in her macula. The retina specialist then repaired this further damage, and she is happy with the results.
This experience gave rise to the question why none of her routine ophthalmology exams by cornea specialists had revealed the problem in the retina. She told us that Dr. Gorovoy told her that typically cornea specialists do not check the edges of the retina during these exams unless the patient notices and mentions symptoms. Since she had no symptoms until long after the event, no cornea specialist ophthalmologist had checked the edges of her retina for tears, previous detachments, etc.
In the case of dental bone grafts, both the ophthalmologist and the dentist or oral surgeon of the planned procedure should be informed of the cornea transplants. Unwanted side effects can occur in the corneal graft tissue in some cases. No further information was given as she did not know what those side effects are.
Questions and answers arose about the time required to be spent on one’s back. This varies from doctor to doctor. One requires several hours with eyes turned to the ceiling while the patient is in a reclining chair in the doctor’s surgery suit. Another requires a strict 24 hours flat on the back. Still others require additional periods flat on the back at intervals during ensuing days after transplants. The consensus was that patients need to ask their doctors about this.
Cataracts and their removal and when to remove them also came up. The experienced members largely agreed that this is the patient’s surgeon’s preference. Some do both the transplant and the cataract removal with artificial lens implant in one session while others prefer to do them separately or refer patients to the cataract surgeon of choice. If the patient is young with no signs of developing cataracts yet, this may be deferred until cataracts are present.
The question whether Fuchs’ is more prevalent in women also came up. Some sources cite a ration of three women to two men as the norm. No nationality or race is exempt from Fuchs’.
Whether there is a causal relationship between corneal endothelium transplant surgery and the development of glaucoma. Experienced. patients present agreed that there is no direct correlation, but that prolonged use of steroids can spur the development of glaucoma in those who are labelled glaucoma “suspects.” This concern as well should be discussed with the surgeon.
Each new person was given a copy of the full set of Corneal Dystrophy Foundation free literature and instructions as to how to find and join Fuchs’ Friends.
To date no program has become available for the September 14 meeting. The schedule for the Chicago Area Local Group includes a November presentation by Marian Macsai, M.D. who has served as a medical consultant to the Eversight local eye bank and performs DMEK, DSAEK, and DSO in our area. In January Peter Veldman, M.D., currently doing DMEK and sometimes DSAEK at University of Chicago Medical Center plans to speak to our group. He is associated with Katherine Colby, M.D., who is one of the early experimenters with DSO and refers the three of four patients who do not qualify for DSO to Dr. Veldman. We have Rachel Epstein, M.D. also on our upcoming events list, but have not yet arranged a date convenient for her schedule.