Floaters and flashes… signs of retinal tears and detachment. Marylou needed a new retinal specialist in a hurry. Thanks to good friends like Rosa, scheduling a doctor’s appointment was a snap.
Written by Marylou, a woman with Kniest.
I just had to share this story…I recently had increased symptoms of detached retina…you know the typical floaters and the flashes. I have always had regular annual retinal examination/check ups with a retinal specialist in my area at UCLA’s Jules Stein Eye Institute. My doctor recently closed his practice and moved to another state. I hadn’t established a relationship yet with a new doctor over there. But knew I had to look for a new specialist soon.
The other day my floaters decided to go on overdrive and I started to freak out thinking I better get to a retinal specialist ASAP. I called UCLA and couldn’t get a quick response. Then I remembered that Rosa had found a great retinal specialist for her son (who had a very successful surgery this summer for a detached retina), she gave me the doctor’s info and I called for an appointment.
To my surprise they would not see me until I saw my regular ophthalmologist first and get a referral. I told them that I have a PPO not HMO and I don’t do this referral routine. I also stated that I have a high risk for detachment like their patient Steve (my friend Rosa‘s son), etc. They insisted I have my doctor refer me. So I went ahead and called my Ophthalmologist who did my cataract surgeries, they immediately called the specialist for me. But unfortunately that was still not sufficient and I couldn’t get an appointment. It seems that they have a policy of only seeing patients that “really” need a retinal specialist. I was dumbfounded. Why waste time seeing an ophthalmologist first?
So I called Rosa…told her the story. She then immediately called the specialist and gave the people answering the phone an earful. 10 minutes later she called me back to let me know that I had an appointment scheduled for the same day!! WOW! Now that’s my kind of woman! THANK YOU ROSAAAAH!!!
I know that often the people answering phones at a doctor’s office make discretionary decisions, but this was ridiculous. Usually the doctor has no idea that this kind of BS is going on (and need to do some staff training). Fortunately Rosa stepped in. I was thinking how thankful I was that we are able to help each other during these kind of situations. I have referred my ortho doctor (for hip replacement) to 2 other Little People., it makes a big difference to see a doctor that has seen other Little People.
Back to the story…so I met with retinal specialist, he is a fabulous doctor. He did a very thorough examination, was confident and had good bedside manners to boot. I thanked him for seeing me on “short” notice, he was clearly interested to have me as a patient and he knows my former retinal specialist as well as my regular ophthalmologist. He stated that I am ok. I have Lattice Degeneration, no retinal tears or detachment, but there is some “pulling and separation” and that it needs to be examined again in 2 weeks unless I have another increase of symptoms before then. I am going to be monitored very closely. What a relief.
He stated that Rosa and I look alike, and asked if we were from the same family. He also stated that maybe we should do a gene pool study to see if we really are related! HA! I told him that YES, we are from the same family…the Kniest family. Thank you again Rosa!
Marylou, your Kniest sister 🙂
For more information about this story you can contact:
Marylou: firstname.lastname@example.org. Marylou has Kniest, married, husband is average size, they have one child who is average size. Her website is www.high10yourlife.com.
Rosa: email@example.com. Rosa has Kniest, married, husband is average size, they have 2 children, one with Kniest, the other is average size.
Where to go for more information
about eye problems in people with Kniest
- Links about eye problems
- Information about Kniest
- Contact parents with children with Kniest and other kinds of dwarfism
- KSG advocacy center
- Frequently Asked Questions for families with newly diagnosed children