QUESTIONS ANSWERED

Ok guys! The FAQ section I'm about to post was written a couple months ago. Things have changed with my frill for the better since this was written. I will make a new update about my frill and answer all of your questions underneath the FAQS.

FREQUENTLY ASKED QUESTIONS ABOUT MY FOV
What was your floaters like? crystal worms,strings,thin clouds, and blobs.

Which eye did you do and why? I did my right eye even though my left has more floaters. I did this because there was a huge crystal worm stuck in the center of my vision of my right eye. My left eye has a lot more but I think the vitreous is more liquified there so they are more free flowing.
 Very annoying , but I just couldnt get past that one crystal worm in my central vision of my right eye. and I do plan on getting my left done.

And Who was your surgeon? I will not disclose my surgeon for a couple of reasons. My surgeon is what I would consider pretty local (2 hours away) and is not a "FOV surgeon" as in he is not known for FOV. he told me he has actually only done 7 of them, I would be his eighth. He told me nobody had ever complained of frill. Im beginning to wonder if i'm his first floater patient who has not had previous cataract surgery though because I'm his first patient with frill. I do not want to have a bunch of floater patients emailing and calling him about floaterectomies. He wouldnt even discuss FOV with me until I seen him in clinic anyway. I will say that he is in Columbus Ohio. He is very sympathetic and all around an amazing doctor even if I was left with some problems (Frill). Also he was very hesitant to do the FOV. He did not just go for it. He carefully explained the risks, and made me take time to think about them first.

Was PVD induced? Why or why not? yes PVD was induced. I wanted PVD induced although I wasnt really given the option. He thought I already had a pvd from ultrasound anyway. But he said if I didn't then he would only do it if when he got into the eye he thought it woud be safe and effective. After surgery he told me he only left a little behind the lense to protect from cataract. He also told me some parts were very adherent to my retina and that was "the bulk of the work". He never mentioned retinal tears, laser, or cryo. so I'm assuming all went well.

inpatient or outpatient? Outpatient, I stayed in a fancy hotel the night before and the night after. If I was going to go through this trauma I wonted to pamper myself:)

Cost? idk...insurance paid for it. And if it didn't then it was going to be paid for by a low income program at that hospital.

Surgery experience? I was taken in and a cap (like a shower cap was put on my head) all nurses were extremely optimistic and upbeat. They were surprised at how young i was (26). I also had a gown on. I was on a chair like a dentist chair. I signed some papers, was explained the risks again, etc. Surgeon drew an X above my Right eye and called it my tattoo. Local anesthesia. After the anesthesia was given everything became a blur. I remember being rolled to the OR and it was very cold in there. The nurses put warming blankets on me. I saw a bright light and a blurry image of my doctor. I asked if it was my doctor and he said yes and thats all that was said from me the whole time. I was in and out of consciousness. I saw the needles in my eye, heard the vitrector, and saw the kenalog being injected. Yes I felt pain but I was so drugged up I didnt care (I forgot to say along with the anesthesia I took clonazepam). I'm pretty sure he had students watching because in my previous appointments they followed him around and during surgery I heard him say "It's hard to get off because she's so young". I dont know what gauge was used but I did hear him ask someone to hand him "the23 guage"

Sutures? Yes and i'm glad because I have a huge fear of hypotony. My pressure only runs 9-10 as it is. they were miserable and itchy and felt like I had sand in my eyes but I wouldnt have chosen any other way.

Patch was removed the next day. I was surprised there was no floaters. Everything was yellow for about 5 minutes then normal color. very blurry but better than expected.

I was off work for two weeks.

It took over two weeks for vision to be back to normal because I remember being back to work and the clock on the wall being blurry from a seat where its usually not. Idr exactly how long until pre surgery vision though.

I noticed frill the night of the surgery. I thought it was flashes and freaked out. flashing arcs at the top and bottom of my vision. I had no clue it was going to turn into the dreaded frill (but hey better than retinal detachment) surgeon looked and everything checked out perfect.

I know my vitrious remolded. Over the weeks I began to see what looked like cracked glass in my right periphery in certain lighting situations. then it looked like a giant black eyelash against my pillow. and now I can see my vitrious skirt. flashing arcs at the right and bottom of my vision when light hits it a certain way. Best I can explain is like lightening strikes.  I also have shadows in the bottom of my vision that bounce intermittenly. they arent as annoying as the lightening things though.  also, when i'm outside, in my right periphery it looks like their is hairs hanging down in front of my face.

Am I better off than before surgery? Yes. All my problems was moved from central vision to peripheral. I am not ecstatic about the results and would consider getting them fixed but I do not have any regrets. Im very afraid that I will get them fixed but the problems will worsen like the stories ive read on floatertalk


YOUR QUESTIONS FROM FACEBOOK

 HAVE THE FLASHES GOTTEN ANY BETTER AND DO YOU HAVE ANY POST OP FLOATERS? THE FLASHES HAVE GOTTEN A LOT BETTER OR IM GETTING USED TO THEM. IM HONESTLY NOT SURE. NO POST OP FLOATERS. I HAD KENALOG DEBRIS AND IT TOOK A FEW MONTHS FOR THEM TO GO AWAY COMPLETELY. I THOUGHT THEY NEVER WOULD. I ALSO HAVE A FEW TARGET CELLS AND THEY ARE NOT BAD.

WAS IT A COMPLETE SUCCESS AND DO YOU HAVE FRILL? THE FLOATERS ARE ALL GONE SO IT WAS A COMPLETE SUCCESS IN THAT RESPECT BUT I DO HAVE FRILL. ITS NOT WORSE THAN THE FLOATERS,

REALISTIC RECOVERY TIME TO RETURN TO WORK? I WENT BACK TWO WEEKS LATER BUT I WAS STILL A LITTLE BLURRY BUT IT WAS WORKABLE .I WOULD GUESS THAT EVERY SITUATION/PERSON IS DIFFERENT. IF I WANTED TO BE COMPLETELY CLEAR WHEN RETURNING I WOULD HAVE NEEDED TO WAIT ABOUT 3.5 WEEKS.

WILL YOU SURGEON DO ANYTHING DIFFERENT THIS TIME TO MAKE LESS FRILL? I DO NOT KNOW, BUT I HAVE COMPLAINED ABOUT FRILL SO MUCH I WOULD SAY HE PROBABLY WILL TRY A LITTLE HARDER IN THE PERIPHERY THIS TIME. HE HAS ALSO RESEARCHED FRILL A LITTLE BIT AND HE HAD NEVER EVEN HEARD OF IT BEFORE HE MET ME.

HOW BAD WERE YOUR FLOATERS BEFORE YOU WERE TO THE POINT OF WANTING FOV DONE? BAD ENOUGH THAT I DIDNT WANT TO LIVE ANYMORE.
..

2nd FOV

I just wrote my surgeon about scheduling my next FOV for my other eye. My heart has a heavy feeling and I want to puke. He hasn't emailed back yet.

Goal/frill

My goal for this blog is not to convince anyone to have an FOV (floater only vitrectomy). I believe it's a personal decision that needs to be taken very seriously and only if the benefits outweigh the risks. Ask yourself, can you live with the floaters? Am I on the verge of suicide? Are they a minor annoyance? How often do I see them? How big are they? Do they consume me? What if something goes wrong during surgery? How happy will I be after surgery if it's a success?  Am I willing to trade floaters for potential frill?

My goal is to support and educate sufferers. I've been down this road and have a lot of knowledge about the subject. One main question I'm asked almost daily is what is frill? What does it look like?

Frill is very hard to describe and can be different for everyone. Sometimes it's like a lightening strike in my very periphery. Other times it's like black hair in my periphery. To me it's less annoying than floaters. It depends on what kind of light situations I'm in. Frill is the remaining vitreous left In your periphery  to protect the lense from cataract. Many people think the vitreous is useless. This is false as it serves as a protection mechanism for the lense.  If too much is left you will get frill. If too much is taken you most likely will get a cataract. It's true that the FOV rarely goes perfect but often times there is improvement.

Mail

Going doctor to doctor costs a lot of money that I didn't have. If you call up any retinal specialist and tell them you need your floaters sucked out, you get treated like you should head to the nearest mental hospital. Believe me, I know. I called every retinal specialist around and the answer I got was "make an appointment to make sure your retina is healthy" I would then say "I've been checked multiple times and I know it's healthy I just have floaters." Then I would hear "floaters are benign you will learn to ignore them." Or "you need to make an appointment for any medical advice, we can look but probably won't do any surgeries unless something is majorly wrong"

I then thought how can I get any sympathy from anyone?! I need to reach out to these doctors all at once and see if ANYONE cares. I decided to send out 20-25 letters through the mail to all the retinal specialists around. I also sent email after email. I actually got sympathetic responses from 3 doctors. One telling me he wouldn't do the surgery, but he really feels for me and knows I'm going through hell. He called me on the phone and talked to me for about ten minutes. He was super nice and it felt good that at least someone cared (Ryan deazy of the Cleveland clinic). One said he would do the surgery but my insurance wouldn't pay and he wasn't a retinal specialist which kind of put me off. He more specialized in lasik. And then my doctor who emailed me and told me to come see him, which I did. He was very sympathetic and explained all the risks before surgery. Here is an example of the letter I sent

Please do not copy this letter. If you feel like doing this idea, please make your own. We don't want doctors receiving the exact same letters from different people.

I am writing as a plea for help. My medical condition is not taken seriously and I am being brushed off by every doctor I see. I just ask that you hear me out and reply with your thoughts if you can.
I am a 26 year old new mother. I've had eye floaters around the past five years. I was able to cope with them and ignore them (filter them out) like most people can do. I only had a few. I would see I them in nursing school on the white board, on the walls, and on the paper in front of me while taking tests, but they were nowhere as severe as they are now. I was told by my doctor there is no cure and I have to live with them, and I was able to do so at that time.
I had my baby boy on November 9th, 2015. Toward the end of my pregnancy I noticed the floaters started getting more numerous and larger in size. I was no longer able to filter them out. When I drive I have a large snake looking floater in my central field of vision floating up and down ( right eye). There are also lots of smaller string like floaters around it. I also have them in my left eye but my right is more severe. As I type on this computer they are bouncing all over the screen, very distracting. When I walk outside and turn my head in either direction TONS of small floaters go all over my field of vision. I would go as far as to say I have hundreds. For this reason I have avoided going outside. I go to work, I go to the store, and do what I have to do. But I limit myself to indoor activities with the lights dim and curtains closed. It's a miserable way to live.
These floaters do not affect my ability to do anything such as read or drive as long as I continuously move my eyes to get them out of my way. But they immediatly float back in the center. Constantly flicking them out of my way is beyond tiring on my eyes physically and on my mind mentally. If I didn't constantly move them, I would not be able to perform daily tasks.
I know many people have eye floaters and its a natural part of the aging process. I feel like I could live with a few. But I feel like I'm living a complete nightmare. When I wake up in the morning and look at the wall or ceiling they are the first thing I see
I have done TONS of research and I know exactly what they are. I know they are harmless. But I feel they are just as mentally debilitating as cataracts and many other eye diseases, I feel like they are brushed off because they are "harmless".
I have had three different doctors look at my eyes and two of them didn't see any floaters at all. The third, a retina specialist, said he saw one small floater in my right eye and said I have mild vitreous degeneration. I asked about a vitrectomy and he became very unprofessional, got mad that I would even consider such a risky surgery, left the room and refused to speak to me anymore. He also told me he does not believe my floaters are there because he can't see them. I believe these floaters are so small and dense they cant be seen by a doctor. But the shadows they are casting on my retina are much larger than the floater itself. Which would mean only I can see it. I came to this conclusion after months of studying this topic on my own.
I'm flabergasted that any doctor would think I would want to have needles stuck in my eye and chance a retinal detachment and blinding infection for a mild nuisance. I am not crazy although I have definitly been treated that way.
I found a doctor in Virginia willing to do the surgery. The problem is I only have medicaid which will not cover procedures out of the state of Ohio. I make $20,000 a year. I sold my truck and used my income tax this year to come up with the money to pay for this surgery out of pocket. Yes, Im a single mother at near poverty level and I was willing to spend $11,000 out of pocket to fix this problem. That should tell you the severety. The doctor was going to charge me $5,500 per eye.
I began to think. What kind of doctor would be willing to perform this surgery without at least examining the patient first? What was I getting myself into? He claims he has done thousands of vitrectomies and has only had one complication. This to me seems unrealistic. Is this doctor just out for my money? What if something goes wrong after the surgery? I would have spent every last dime on the surgery and not be able to afford to have the issue fixed. After much thought and temptation I have decided not to go for the surgery. I need to find someone willing to accept my insurance, and most importantly accept my condition as legit. I need someone who does not think i'm psychosomatic. I've tried antidepressants. They do not help. It's even been suggested that I comitt myself to an institution for help. I feel no mental help is going to solve my problem. The problem is physical and it is real. No I'm not in any danger or pain but my quality of life is drastically reduced.
I have resorted to writing letters because I can no longer afford to go to different doctors, have my eyes dilated, go through a long exam and tests, and be told there is no help.
I know all the risks to vitrectomy. I've spoke to people whom have had vitrectomy disasters. I've also spoke to people who have been helped with vitrectomy and their lives improved drastically.
Laser surgery is not an option either, as my floaters are too small and dense. I wish it was.
I'm trying to find someone willing to listen and undestand what torment I go through every day. Who would be willing to perform a vitrectomy after I verbalized understanding of the risks. I know the risks well.
I just ask that you please listen and consider. I would also like to add that I do not have any health problems and it has been confirmed there is no retinal detachment.
Thank you for reading,
Allison Queen

Fair fax

I mentioned in my last post that I was going to go to Washington, D.C./fair fax or wherever he is to have my FOV. Well I watched his videos and seminars etc and he seemed like a really good doctor. I had a date set up to drive there and have my FOV. I exchanged many emails with this doctor and asked many questions. He made the surgery sound like a peice of cake. I asked him how many eyes he has messed up doing FOV and he said none. I then got on floatertalk and read whattodozels story and sent it to him. He didn't admit it was his patient for hippa reasons, but zel posted proof that he was the doctor. I then told this doctor that he had lied to me. His response was "it has happened but it's rare." So first he told me it hasn't happened, then contradicted himself that it has happened rarely. I was also going to pay out of pocket and asked him if anything bad happened requiring another surgery while I was there, if I would have to have the money up front again and he said yes. So basically I felt like if I had a retinal tear that needed fixed the next day he would leave me hanging because I didn't have the money for two surgeries. When I brought this up to him he said "you can have it fixed in Ohio right" (because my insurance only works here in Ohio) so basically he was saying if he messes up someone from my area can fix it. It was all a bit shady to me so I cancelled.

My next post should be really interesting to you. It will be about how I met my doctor and my strategy with finding him:)