Posted by jessica1 on 5/24/2007 at 8:02 AM
hello i'm new to the site and suprissed how many people know about PHPV my daughter was born on september 11th 2006 with the condition in her left eye. any experienced parents or patients advice would be very welcome about the sorts of things i can do to make things easy for her she would not have the cosmetic shell fitted as she knows her mind already at 8mnths! she has the micro eye condition as well.
There are currently 31 replies
Re: PHPVPosted by Ndababneh on 1/25/2017 at 12:05 AM
I was diagnosed with PHPV shortly after birth back in 1994. Although the misalignment in my right eye has made life a bit rocky for me socially, I'm proud to say it has never stopped me from achieving my goals. After graduating this December I decided to undergo my second muscular eye surgery which aimed to correct the misalignment in the right eye. The results weren't of much help. Is anyone familiar with any procedures that have high rates of success in regards to cosmetic correction? Additionally, I'm simply looking for young adults my age with PHPV that I could connect with. I have never met anyone with PHPV!
Feel free to reply or email me at Najeeb.Dababneh@wmich.edu
Re: PHPVPosted by Shannon Carollo (TVI, O&M) on 1/12/2017 at 11:02 AM
It is always helpful to seek a second (or third!) opinion. If the pediatric ophthalmologist agree, you'll feel much more confident it proceeding with the surgery. If they disagree, you can continue researching and seeking guidance from experts.
PHPVPosted by mkburdick on 1/11/2017 at 4:09 PM
Hi, My Foster to Adopt daughter was born with PHPV in her left eye and it was diagnosed in the hospital at birth. She is now 7 weeks old and surgery is scheduled for Feb 3rd. She will be 11 weeks old then. I am concerned about the wait for surgery but also hopeful as her eye does not seem that bad. If not for the cataract, you most likely would never know there was anything wrong. She makes eye contact, but it does seem that it isn't as much as it should be. She most prefers bright lights, but so do babies without PHPV. She moves both eyes together and seems to be basically fine. I am trying to learn as much as I can about PHPV but everything I read seems to be far more severe than she seems to be. A B-Scan Ultra sound was done and we were told that she was better than expected, but I am still not sure what that means. She is definitely not blind in the affected eye and I am worried that surgery will cause more damage than good. Does anyone have any information thy can share that could help.
Re: PHPVPosted by wdpayne on 9/15/2016 at 5:02 PM
My daughter was born with PHPV in her left eye back in 1995. She is 21 now and cannot see anything in the affected eye. Her doctor said that her retina was distorted and that she had no possibility of vision in the eye. She had surgery at 6 weeks and 6 months to minimize the risk of glaucoma - so far, so good.
She hasn't let the condition stop her, however. She did competition level gymnastics for 10 years, reaching the 8th level (10 is elite) and was very competitive, including winning a state championship in vault. She changed to high level competition cheer for 5 more years where she competed in the World Championships for four years, finishing in the top five for 3 of those years. Many of her teammates didn't even know that she was visually impaired. We are very proud of what she accomplished despite her condition. She is now in college studying to be a certified athletic trainer.
Re: PHPVPosted by Joreen on 1/2/2016 at 10:01 AM
My son is 3 years old now and diagnosed with PHPV with severe retina detachment when he was 4 months old. Can anyone share with me it is safe for him to fly in an airplane or travel to high altitudes? I have read some article mentioning that flying or traveling to high altitudes can cause pressure build-up within the eye and deteriorate the condition.
Re: PHPVPosted by AMarie0510 on 12/5/2014 at 4:11 PM
Hi everyone...not sure if many people are still active on this message board but I did see that a lot of posters are around my age. I'm 29 years old now and was diagnosed with PHPV in my right eye 1 month old. I've had various surgeries thought infancy and early childhood, we also tried patching as a child but that didn't really do much but drive me crazy ??. For those parents on the thread with babies who were recently diagnosed please know that PHPV has not had a lasting effect on my life. I had a normal childhood, played non contact sports, excelled in school, got my drivers license, etc. I am sure you are all a little scared and nervous but I have not found anything that I can't do due to my blindness.
There are a few things that I would love to discuss with those on this thread who have PHPV and are adults. How do you all deal with the asymmetry from your eyes beig different sizes? Has anyone tried any surgical corrections for that? Also, how often have you all needed muscle alignment surgeries?
Thanks, I can't believe I will finally have someone who knows what it is like to have PHPV.
Re: PHPVPosted by aeloftis on 10/22/2014 at 4:22 PM
My son was diagnosed with PHPV about a month ago (he's currently 3 months). He has undergone surgery and unfortunately, it was worse than his surgeon thought, in addition to PHPV he had very little normal anatomy in the eye so the chances of any functionality are obsolete.
He is a very happy baby. He smiles and coos when you talk to him and play with him, however he makes very little eye contact (doctor confirmed the other eye is healthy) and doesn't seem to be tracking very well, if at all. Have any other PHPV parents observed this in their little one? If so, has it improved with age?
Re: PHPVPosted by firstname.lastname@example.org on 9/28/2013 at 7:04 AM
Hi I m Mohita from India my daughter 2 months old diagnosed PHPV in both the eyes. going thru all doctors in india results are negative. Is there any way to get vision in her eyes because her case is rare as told by doctors. Please help want to save my daughter.....
Re: PHPVPosted by sgetek on 9/13/2013 at 9:39 PM
I am 28, I was born with PHPV in my left eye. My doctor attempted a cornea transplant, which failed in 1985 when I was 1 month old, in an attempt to repair/improve my potential eye sight.
We tried patching and several other therapies to help, but honestly nothing helped. I felt normal until I was old enough to realize I was different.
If anyone, parent or fellow PHPV-er needs any advice, or someone to talk to, etc, please let me know. I've never actually met anyone else with PHPV so I know how frustrating this entire process can be. Stephanie200318@aol.com
Re: PHPVPosted by xectron on 6/28/2013 at 7:14 PM
Hi, my name's Brett Rayfiel, I'm 16 and I have PHPV in my left eye. My grandmother discovered my eyes were different colors under a certain light after I was a few weeks old. They brought me to Jules Stein Eye Institute and I went through 4 surgeries to repair a detached retina and several cataracts. However, they were unable to recover the eye even using the patch to cover my good eye.
If anyone has questions or concerns, feel free to email me at email@example.com
I also made a Google + page for PHPV:
Re: PHPVPosted by nolsen462 on 12/18/2012 at 6:37 AM
Any help I can provide I will. I have been blind in my left eye since 1982 due to PHPV and not until today did I realize there are groups to talk about it. I have worn a sceral shell since I was about 3 months old.
Re: PHPVPosted by mmauler247 on 10/8/2012 at 10:13 AM
My name is Kody i am 18 and off to college in northeast Nebraska i was diagnosed when i was 4 months old with PHPV...i have lived with it all my life and am willing to share my story and help those who seek it...my parents as well would be willing to give guidance and knowledge
Re: PHPVPosted by jessica.kovacs979 on 9/26/2012 at 2:55 PM
Hi- My son, now three, has bilateral PHPV. It's hard to find good information on this condition but there is more out now than ever before. There are groups on Facebook and there is ROPARD.org.
I write a blog about my son that you might find helpful http://thomasmarshalldoesitall.blogspot.com
My son has very severe PHPV. He was born with no visual response but had light perception after several surgeries at Beaumont Hospital. Dr. Trese and Dr. Capone are quite famous for their treatment of PHPV (Also known as PFVS- Persistent Fetal Vascular Syndrome.)
So yes, my son is blind but he is doing great. It's a different life but it's a good life! With proper training and blindness skills blind people can have adventurous and fulfilling lives. Good luck!
Re: PHPVPosted by TheBlind.US on 9/15/2012 at 12:27 PM
I have 2 puppies. One is a Terrier mix and the other is a Japanese Chin.
Re: PHPVPosted by Adriansmama on 4/13/2012 at 9:50 PM
My son is now 10 years old and was born with pvhp. I noticed a difference in his eyes when he was a few weeks old. Tests, numerous diagnosis, ct scan, toxocara, screaming infant with metal clips in his eyes to hold the lids open....and in the silicon valley thinking we have the best of the best. Today I finally got the proper name! Hes a typical boy. I let him do things other kids do but he has to wear his cool little RayBans (clear lenses) for safety purposes and knows that he has only one eye and he has to protect it. I keep sports to a minimum, He did play Tackle Football and was the only one with the face shield :) BUT he was in the game. I dont know what his future holds but I do know he will do just fine. He has a cataract already. Kids ask whats wrong with his eye. He finally speaks up and says "its blind duhh". I wish I knew then what I know now because I held guilt thinking what did I do wrong and felt alone. Im glad to have found this forum. If there are any other parents reading this and have babies, Id say the hardest years are when they are walking or learning to walk. Cover the door knobs with a soft covering when they reach that height, no running in a house full of corners because their peripheral vision isnt like ours and they will smack right into it. Hes had many many bumps and shiners. I always hated taking him to the Drs. with black eyes. I felt like I always had to explain myself unless he was seeing his own Dr. who knew. God Bless. Good Luck. Its not the end of the world moms....they adapt.
Re: PHPVPosted by LittleMrs.Nikki on 3/15/2012 at 2:56 PM
Hi. I'm 29 years old (almost 30) and was born with PHPV affecting my left eye. My vision in my right eye is ok. I do wear glasses and have since I was 2. I was unable to receive surgery for my PHPV because the doctors were concerned it would just cause scar tissue to form on my optic nerve. I have peripheral vision but no central vision in the affected eye. Retinal pictures for my right (good) eye show it to be normal and healthy. Pictures of the left are hindered by the vitreous. I have had surgery to align my "bad" eye with my "good" eye, twice. Once when I was 4 (it wore off by the time I was 8 or 9) and again when I was 23 or 24 (it's still mostly aligned.) I don't know if I'll do it again or not, when the surgery wears off. The pressure of both of my eyes are currently normal so no glaucoma or anything else.
I really don't think my lack of vision has hindered me that much. More so being treated as though something was really wrong with me. There are things I can not do. I can't join the military or be a professional pilot (at least last I checked.) I can't see 3D movies popping off the screen. However there are a lot of things I can do. I can drive a car. I can play sports. In fact I did roller derby for a year and no one knew I had any serious vision impairment. I can still see.
Re:PHPVPosted by PHPValso on 2/22/2012 at 3:32 PM
PHPVmisty I have you beat... You have to accept our disease and then move on. I was born in 1956 as a military brat and nobody even new to look for this disease in the eye. It wasn't until I was entering first grade, 1962, that I had my first eye test and that was when I failed it because I was already blind in my right eye.
The doctors didn't have a clue what was wrong with me so they had no teatment for it. Over time i got a detached retna and a cataract started to form. I have all of the eye problems you describe.
I am currently 55 and still have a cataract, quite large by now, but my medical insurance won't cover to remove it since it won't restore my sight.
Thank goodnes that it can be recognized early today and others will have a better chance to fight the disease.
I cannot stress to others the value of portecting the other eye not affected by PHPV. Please regardless of how much your child may balk at it, even if their eysight is 20/20 GET Them into some safety glasses. They have only one eye to work with and it is nothing to mess with. I have been wearing plastic glasses all of my life and they have protected me many times.
A person with one eye can do ANYTHING that a person with two eyes can it just takes a little more practice to learn how to do it.
Make sure you little ones don't give up if they lose the sight in one eye, they will be a better person by learning how to deal with this situation.
Blessings to all who have this disease it can be challenging but it can be overcome.
Re:PHPVPosted by firstname.lastname@example.org on 2/8/2012 at 10:53 PM
i also have a daughter with PHPV.
Re:PHPVPosted by ayush on 2/1/2012 at 8:54 AM
hi,my son was operated at 5 weeks ant vitrectomy with lens aspiration followed by membranectomy at 10 months;he has a microeye.He is on occlusion2:1.He can pick up small toys in his vicinity even when his good eye is patched.The battle is the patching,the child initially is very uncomfortable with the patch slowly he starts seeing & then u have 2 keep at it.time will tell about his final vision he's a lovely boy.god bless
Re:PHPVPosted by danambuul on 1/30/2012 at 6:48 PM
Hi, We just learned that our 6 week old daughter has PHPV. Tomorrow I will learn more about the specifics. I would love to hear from the person who seemed willing to talk about his own experiences with this condition. I don't want to go overboard with treatments if a little bit of vision is better than none. Cosmetic versus a little comfort.
PHPVPosted by phpvmisty on 1/4/2012 at 11:54 AM
Hi Guys! I just have a minute...but I recently was talking to a friend who has a little boy with PHPV. There aren't a lot of resources and information about PHPV. But I was born with it and one of the first people actually "officially" diagnosed with it (1980s)...anyway, after speaking to my friend I realized that I could be a resource for those little kids who can't express what is going on or what they are feeling. I know, I was there...it's hard to explain to doctors what I am actually seeing (I am legally blind in my left eye, but I can still see, but because of retinal detachment, shriveled optic nerve, involuntary eye movement and such it isn't great) but I can provide some insight what it's like to grow up with it, the struggles i did have, and that i'm now a 31 year old who lives a happy and very normal life (though i do have restrictions on my drivers license)...i'll be back on soon, but hope to catch up with some others who are experiencing PHPV!
Re:PHPVPosted by ChiaMom on 12/15/2011 at 12:35 AM
Hi everyone. I'm 49 and only received the diagnosis "PHPV" a few years ago when glaucoma hit my "bad" eye unexpectedly. Up until then, I only knew that I had an eye which did not work well. I used to have some peripheral vision but now with the Glaucoma it is gone. For those of you who are parents of young children, my heart goes out to you. The worst thing I had to deal with was teasing from other children, but I was taught to feel sorry for people who make fun of someone for something they have no control over. Ultimately, it has made me a more compassionate person. Now I am about to face surgery--the ultimate--and a prosthetic because the glaucoma and pain from pressure is too much. I would welcome any experience stories regarding herbal remedies for reducing pressure. God bless you all and AFB for this site! Thanks.
Re:PHPVPosted by aymen on 10/24/2011 at 4:36 AM
Thank you all for your kind stories and may Allah be with you all, I just like to add up my son story , he was diagnosed of phpv at his 4 year and 3 months old, it was very difficult to receive the right diagnostic, it took me about 3 months between doctors to get the right diagnose. Now he is 5 years old. He is on a patch for 5 hour a day; of course we started with him for 8 hour, then 4 then 5 now. His side was about 6/9. He was not able to see less than 2 feet, now after 6 months of patch treatment he can see for about 2 meters. Anyhow, my son eyes are the same sizes, is it still a type of PHPV. Also is patching process will affect the other eye? Please help me on these questions.
My email is email@example.com
Re:PHPVPosted by bolor on 10/15/2011 at 3:12 AM
Hi ''adhrit'' I want to know about what is the hospital you visited. My daughter is 5 months. She has PHPV in her left eye and I want to operate her in this hospital.
Re:PHPVPosted by cray86 on 10/2/2011 at 5:45 PM
Hello everyone - I think I bring a unique perspective. I'm a 25 year old male and I had PHPV in my left eye when I was born. They discovered a tumor like object in my left eye at my 4 week check up and thought it was a tumor and I had cancer. They put me into surgery and discovered it was not terminal, and was in fact the rare condition of PHPV. They resolved the issue but had to remove the lense from my left eye in the process. I have effectively been blind in my left eye. We even had a plastic lense implanted in the 2nd grade as an attempt to restore some vision, and it didn't work. My left eye is smaller then my right eye, and we did have muscle surgery on it so it would stay aligned with my good right eye and not wander off. My eye doctor checked my eye pressure regularly to see if glaucomma developed. It did, but I have simply taken eye drops in my left eye twice a day for over 20 years now. This is because the two eyes will mimic each other when it comes to internal pressure. By keeping the eye pressure in my bad left eye under control, the right eye is happy and healthy. Twice a year I get my pressure checked, my peripheral vision tested and my retina examined through in-office dialation. My right eye is STILL 20/20 and I even have good color perception :) I got my masters in computer science and landed a great job right out of college, even in this economy. As my eye doctor of over 20 years said to my parents when I was younger "The bad news is he'll be blind in one eye. The good news is, two eyes are overrated."
Re:PHPVPosted by adhrit on 9/27/2011 at 5:45 AM
I am from India. My second child, a boy, was diagnosed with PHPV in the left eye at 3 weeks of age. The doctors gave no hope and said he will be blind in the left with little possibility of vision in that eye. He was operated for cataract in the left eye at 5 weeks of age. He had glasses +22 to start with. They did a membranectomy at 9 months of age. Today he has 6/60 vision in the left eye at 15 months of age. This is a working vision as per the doctors. He can see us from his bad left eye. What i can share is early surgery is the best available option for PHPV. My son's vision can be improved further as per the doctors with alternate patching of the eye. He is presently on occlusion 2:1.
Re:PHPVPosted by kpandd on 10/31/2009 at 3:54 PM
we have 4 month old recently diagnozed with PHPV in one eye- we took her to Wills Eye hosp and were told surgery was not an option in that eye and that it was beyond repair- has anyone had any luck with homepathic medicine/diet etc. that has either helped the affected eye or maintains the vision is clear in the "good" eye?
Re:PHPVPosted by Cherylt3 on 2/9/2009 at 8:15 PM
My youngest of three, Stephanie, is currently 17.5 years old. She was born with PHPV. We too visited Wills Eye Hospital. She has worn a sheild beginning at 4 years old. We opted to have her micro-thalmic eye pulled back instead of removed. It has grown to normal size now but functionless. The priority was to fill the space in her head so that her face did not need any reconstruction from lack of structure. I think Dr. Calhoun at Wills is the number one guy in the USA. Stephanie is a patient of Dr. Greenburg and Dr. Pollard in Atlanta. These men are very capable unlike 20 years ago when this was al rather new. Did this help? Stephanie's Mom
Re:PHPVPosted by taz_ahmed2 on 2/5/2009 at 12:24 PM
Hi, my 7-month old cousin has PHPV in both eyes, and just had surgery yesterday on the left eye. I'm not sure of the specifics, but the doctor drained some blood from the eye and now it is patched up. He is going to have the next surgery on his right eye next week. I looked up PHPV and according to the SSC (scottish sensory center), there can be 4 complications: cataract (hazy lens), glaucoma (high pressure in eyes), retinal detachment, and microphthalmia (eye smaller than usual). Does anyone have any statistics on the number of PHPV cases that have developed these complications and what age these complications ususally develop by (if ever)? I just want to learn as much as possible about this disease so that I'm not totally shocked if something bad happens and so that I can stay informed. Thanks.
Re:NEED SOMEONE TO HELPPosted by MOMMA on 5/13/2008 at 3:56 PM
MY SON IS 8 MONTHS OLD AND WAS DIAGNOSED WITH PHPV IN BOTH EYES. HE IS GOING TO WILLS EYE INSTITUTE IN JULY FOR ANOTHER EXAM. HE ALSO HAS RETINA DETACHMENT IN HIS RIGHT EYE. I LEFT THE HOSPITAL BEING TOLD MY SON WAS BLIND AND THAT WAS IT! THEY NEVER TOLD ME ANYTHING ELSE. I'M REALLY SCARED! I NEED TO KNOW IS THERE ANY WAY TO MAKE HIM SEE ANY SURGERY? I DON'T UNDERSTAND! SOMEONE PLEASE HELP ME LET ME KNOW I'M NOT ALONE!
Re:PHPVPosted by butterflynites on 1/4/2008 at 2:12 PM
I too am new to the site. My now 11 week old daughter, Isabella, was diagnosed with PHPV with the micro eye when she was about 5 weeks old. She has her first visit to the ocularist next Friday to start the process of the sceleral shell. How is your baby doing now?
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