Very nervous, PHPV retina in 2 month old, Dr. Philip Ferrone

amother

Tangerine

Mon, Jan 14 2019, 7:34 pm

My son had phpv but no cateracts. He was diagnosed at 7 months and we were sent to dr. Ferrone. He told us to do surgery as soon as possible as after a year it would be too late and he would lose use of the eye. He said the earlier the better the results.
We called Echo who said he's the 2nd best guy, the best is in Cleveland, but it's not a complicated surgery and ferrone is perfectly capable. We also have an eye dr. in the family who recommended him. Phpv is incredibly rare, about 4 years ago dr. Ferrone had done about 40 surgeries and he's an expert in it.
We did the surgery 2 days later, and bh my son had outstanding results. His bad eye has about 20/40 vision. That will not improve with glasses. We are pretty good about patching him many hours a day which he will need until about 10.
When we did the surgery, dr. Ferrone only did it Friday, and he was adamant that we had to come in the next day to check up. Our rav told us that if the office was in the eiruv, we should stay in great neck for shabbos, if not we could take a taxi in. After talking to the Great Neck Rabbi, it was determined that although the office was on the other side of the eiruv a chabad Rabbi had extended the eruv there to enable people to reach his shul, so if we stayed on one side of the sidewalk we could go there within the eruv. Don't know if this is still the case. The rabbi made arrangements for us to stay by wonderful people for Shabbos.
Again, my son doesn't have cataracts, and all the medical information we were told by Dr Ferrone himself, it was too much of a rush to do outside research so I don't know if this will tell you anything he didn't, but hatzlacha with your decision and refuah shelaima.

amother

Jetblack

Mon, Jan 14 2019, 8:12 pm

amother wrote:

Thanks so much for answering
This info was so helpful

amother

Salmon

Mon, Jan 14 2019, 10:17 pm

amother wrote:

How is it that you know.
Question is should the cataract surgery be done at the same time?

2. Is this a surgery that would need to be redone every so often? Or 1 time.
In general of course.

I have a child that was born with cataracts. The dr usually determines if they need to be removed as soon as possible or it can be monitored. The question is how big the cataract is. In our case, they were bilateral and full cataracts so we did surgery at 4 weeks. It’s generally a one time surgery with 20 percent chance of having an after cataract, which means a small regrowth. If that happens happens they have to do surgery to remove that again.

I just want to point out that I don’t know much about PHPV and that may make this case different in terms of how and when to treat the cataract.

amother

Jetblack

Mon, Jan 14 2019, 10:30 pm

amother wrote:

Thanks for the feedback