PHPV: my perfect deformity (p2)

01-thanks-20110608So, I started calling eye doctors. The first few either no longer took my insurance or couldn’t get me in until October. I found, in my contacts, an eye doctor I’d met while bartending a party for the Columbia Presbyterian Ophthalmology Department way back when I was an undergrad. They were so fascinated by my eye that one gave me a card and said to come in sometime. Years later, I still had his contact info—James D. Auran, MD. He came up as one of NY’s best doctors, according to NY Magazine. I told Bij that maybe I’d just spring for him, out-of-network, until his office told me a first time visit was $375 + any tests. Happily enough, I went to their website, as Bij said she knew of someone else good there. That’s how I found the big-hearted Amilia Schrier, M.D. She takes my ghetto insurance because she thinks that everyone deserves to see (what a socialist)—even if they barely pay her anything. The person making her appointments was alarmed enough by my having floaters in my only good eye that she talked to the doctor and got me in the next day. Wow. I was scared but happy.

Note my left eye, which is on the right. It’s smaller, a bit higher, a slightly different color, and has cloudy bits on/in it. Refer to the last post for more details.

After too many years without seeing the eye doctor, I go. When I signed  in, I was asked to sign a form stating that most insurance does not cover a refraction test because they do not see it as necessary health care, and that I would be responsible for this cost, about $75. Of course I asked about this. A refraction test? Not essential? As in, the test to see what prescription a near- or far-sighted person’s lenses should be? A test that says if you need specs and how strong they should be—not essential? The DMV doesn’t think so. How very strange.

The nurse agreed with me. We complained a bit about insurance insanity as she dilated my eyes. Then she took me back to wait for the doctor.

Eyes dilated, I met the doctor, who wore a knitted sweater, the style befitting a kindly grandmother. It was comforting indeed. She heard my story and looked at my eyes. Right eye, good. Left eye, wow! Amazing! A beautiful case of PHPV! “My word, you can see everything!” She enthused. “Mittendorf’s dot!” I was pretty familiar with the discourse around my disease, but this was new. She drew me a picture of my left eye, and explained that Mittendorf’s dot is the hyaloid body. “It’s the embryologic remnant of the hyaloid artery as it joins the capillaries of the lens.” (Source, Mission for Vision.)

She explained that I had a perfect, textbook case of PHPV, exciting because usually the band keratopathy and haziness obstructs the view, especially of the back of the eye. After she told me that my right eye is okay, but I shouldn’t do inversions or jump-backs in yoga :(, she asked me if she could call the residents (her students) to look at my left eye. I said sure. Even though it’s torture to have lights shined into my eye, I like aiding the cause of education, and hey, it’s not often I’m perfect, even if it is a deformity.

She called down to the residents on the phone and told them, “You might never have a chance to see this again in your entire careers.” So up they came, four or five of them. Dr Schrier was very considerate, asking again and again if it was okay, and if I was okay. I was fine. I enjoyed listening to her tell them about my eye, “No, there’s no point in treatment. Nothing to be done. It’s just a matter of making sure the right eye stays healthy,” as well as other logistical info I’d heard before, though she told them differently than I’d heard it. One of the residents said, “Cool!” after peering into my eye with a slit lamp (at left), a contraption I’ve known all my life. It was both bizarre and amusing. Dr. Woodruff (who did his residency at Columbia Presbyterian, once upon a time) never told me what an oddity I was—but then, perhaps that’s not patient etiquette, if you don’t have a bunch of residents around to teach. The residents also seemed to appreciate Dr Schrier’s dedication. When they thanked me, I wanted to make them promise to be as caring practitioners as their teacher, but I kept my mouth shut.

Dr. Schrier thanked me again and again for giving them the chance to look. She took the time (not to mention my insurance) to tell me more about my condition. You might guess I ask a lot of questions, and she took the time to answer them. Being a textbook case, I was curious about what the textbooks said about PHPV, but I didn’t want to press her further. She did tell me to look it up on the internet, which not all doctors will do.

Of course, that’s the first thing I did once my eyes recovered from dilation. Mission for Vision has good info, with pictures. It appears that Dobermans get PHPV too, and you can get certificates to prove your show dog is PHPV-free. And, of course, there’s a facebook group: People with Persistent Hyperplastic Primary Vitreous (PHPV) Unite! In looking at all this, I realize that I’m quite lucky, as many people have more severe (& severe looking) cases. How strange that I can chat online with people who also have this, when I’ve lived my whole life without knowing another soul with the same condition. It also seems that doctors are doing more surgery on infants now, with little affect, which seems quite traumatic to me.

Looking at all the different problems associated with PHPV, I was hugely grateful that Dr. Schrier both took my insurance and got me in quickly—not many top doctors do. The doctors I saw in Oakland (there were two, in the same office) didn’t know my condition and thought that the retina was detached and needed surgery. The retina isn’t exactly detached. It’s not exactly attached, either, but it’s typical of the condition. Seeing docs who don’t recognize PHPV is painful, as well as a waste of time. Thank heavens that wasn’t the case this time around. And lovely I could be educative, as well.

other posts on phpv:
my perfect deformity
my perfect deformity, part ii
PHPV: the eye, vision, and how I see

15 thoughts on “PHPV: my perfect deformity (p2)

  1. Hey there! Just reading through your last several posts and very amused/sympathetic/horrified by your doctor experiences of late. I’m happy for you that you were able to find this doctor. Although – and I could be wrong about this given that I am new to this whole yoga thing – isn’t “downward-facing dog” an inversion? Hope this news isn’t affecting your yoga practice too much!

    Which reminds me, on an unrelated note, I’ve been looking through your yoga site recently also and very much enjoying the insights. Makes me wish I had started years ago when I would have had the opportunity to take some of your classes! Ah well, there is a time for everything I suppose.

  2. Hi Sweets. You are not wrong. There are lots of ways to classify asanas, and any pose in which the head is beneath the heart could be called an inversion. But this is very general. Down dog is usually first considered a forward bend. The more specific class of inversions are of the feet off the ground sort: arm stand, headstand, shoulder stand, handstand, and plow (okay, feet on ground but upside-down). I do them with caution.

    Yes, time for everything indeed. I don’t think people should be pushed to do yoga. They know it’s there. As long as it’s not a resistance issue, and sometimes even if it is. Glad you are enjoying!! xo

  3. Three cheers for Dr. Schrier, especially because she has taken up the mantle of teaching and influencing residents. I am so sorry you had to deal with some dodos who were so inclined to weigh in without anything close to full information. That’s great you found the facebook site! You are indeed an extremely lucky and blessed person. OK, sorry about the positive comment again. That is something I have to work on. I looked at the photo essay on your grandfather. I don’t know quite what to say other than wow that was really something. There’s no attempt to pretend that you could capture his story in any kind of finite sitting, and that itself was very powerful and dignifying. But I almost lost it by the time I got to the picture of the two of you at the end.

    Thanks for sending the link to Sherry’s blog. I saw a bunch of pictures. That’s what we in philosophy call an extremely lovely lady.

  4. Thank you for being open and honest about your condition. My daughter, who is 1, has PHPV and there is little out there in terms of reliable information so to hear it from a woman who lives with the condition is important for me.

    Good luck and best wishes,

    JO’B

  5. Thank you for your post! My 15 year old daughter was born with PHPV in her left eye and is completely blind in that eye. We live in the Houston area, and I was wondering how I would find an opthamologist who is familiar with PHPV. Is there a certain google search I could do?

    1. Hi Nancy. Thanks for the comment. 🙂 Honestly, it’s hard to find a good doctor for this condition because it is quite rare. I’ve never heard of anyone specializing in it, and the condition has so many problems associated with it, really different specialists could be called on (retinal, glaucoma, etc). If I were you, I’d try to find a doctor through a medical school in Houston, so that there’s someone who’s both up on and interested in the eye. If there aren’t any teaching docs there, they might be able to recommend someone to you. It sounds, though, like a the main issue will be keeping the right eye healthy, so you might just want to keep trying until you find someone you have rapport with. PHPV doesn’t develop later in life, so that wouldn’t be a problem for her right eye, thank heavens. Good luck! ~Anastasia

  6. my son of 5 years has phpv in his left eye and is now saying he can see at the very corner (if he looks to the left) of his eye its good to hear from other people with phpv

    1. Annmatie, yes, I can see out of the left side of my left eye and use it for peripheral vision. I actually see quite a bit with it, but mostly toward the left (lucky, as the right covers the right) and not the clearly–only the top of the eye chart. Thanks for your comment. I’ve lived a totally normal life, so don’t worry too much about your son. 🙂

  7. Hi!

    I was also born with PHPV and am blind in my left eye. When I was three weeks old, my mother noticed my left looked cloudy and I was diagnosed with a cataract, which was removed right away. I’ve had two corneal transplants, the first one rejected within a few days. My left eye has always been a lighter shade of blue than the right and gets a little lazy when I’m tired or have eye strain. It’s almost completely blind. I live in New York City and Dr. Ritterband is my Ophthalmologist.

    I could send you photos of my eyeball if you’d like to see and compare notes!

    1. Hi Emily. Thanks for the comment. Two corneal transplants? Wow, that sounds intense. You could send photos–but I’m in NYC, too. We should have tea or lunch! I’ve never met anyone else with PHPV. Would be very interesting. ~A

  8. Hi Anastasia, thanks for sharing your life with PHPV with us. What a very strange condition, and as you say not much info out there… My daughter has just been diagnosed with PHPV, she is 3 mths old. We are over in Australia and they diagnosed it straight away. I noticed that her eyes were not aligned. They say that she has peripheral vision in her left and that her right eye is good (thank goodness!). Out of interest, why didn’t you go for the cosmetic surgery? I was hoping to get this done for my daughter at a later stage. I would be interested to hear your thoughts. Thanks, Martine

    1. Hi Martine,

      Thanks for the comment. Yes, this is my case, peripheral vision in the left and good sight in the right. I didn’t go for cosmetic surgery largely because my trusted docs never recommended it. I did have some (a group) when I lived in California who suggested it, but my east coast docs always said it is better to protect the eyes. Also, there can be unwanted side effects of surgeries, and so I’ve always been happy to leave well enough alone. Medicine has become much more aggressive and invasive since I was a child. I’ve never really felt I needed it.

      Thanks for your comment! Don’t worry too much about your daughter. She’ll be fantastic. It’s really not a huge deal.

      I have many friends in Australia–I almost moved there last year! Drove from Perth across the Nullabor to Adelaide, Melbourne, Canberra, Syndey, Port Macquarie, Yamba, and up to a national park on the border of Queensland. I still need to edit the photos!! http://kirtiklis.com/category/australia/

      All best,
      A

  9. This is a wonderful blog Anastasia, Thank you for being who you are and getting the word out there. I have an 8 year old daughter with PHPV in the right eye and are in Toronto. We are Iraninan Canadians. I will definitely show your posts to my daughters when she grows older 🙂 Thank you

    1. Pantea, thank you so much for the lovely comment. Very thoughtful of you to drop a line. I intended to write more about this when I started, and comments like yours inspire me to do so. All the best to you and your family. Moteshakkeram!

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