Any Eye Surgery Terror Tips?

[scoelicolor]

Hi all, I am currently coping with a new diagnosis (a partial diagnosis). I have advanced SLK and DED. It is currently so bad that I don't leave my house (if I can help it) and I wear wraparound sunglasses 95% of the time. I even fall asleep in them pretty often. I feel like I am going blind, even though I have perfect vision, I cannot keep my eyes open, and I walk around with my eyes closed most of the time. I feel like I am vision impared because I just can't keep my eyes open. Eye drops make it worse over the course of the day and I use them every few seconds by the end of the day. I left my career on hold once my corneal specialist suggested multiple surgeries. and I am seeking a second opinion at MassGen.
Anyone else here absolutely terrified of eye doctors? The words "eye surgery" send me into a feeling of spiraling tunnel vision. Like I want to pack a rucksack and head for the hills, but I freeze up and can't think. Does anyone have advice on handling the anxiety of office visits, especially to talk about surgery? I am 29 and I'm afraid to start this aggressive treatment. My grandfather had eye surgery and it had a domino effect.. Not sure what his condition was, but I'm terrified of going under the knife. Terrified. I am someone who loves cold hard facts and to make educated decisions on things, so I appreciate honesty, even if it's hard to hear.
If my eyes felt a little better, I would put more time into this post; but I need to take a break. I would love to hear from anyone dealing with similar issues, or who has suggestions about eye surgery.

[farmgirl]

Eye drops make it worse over the course of the day and I use them every few seconds by the end of the day.

Two points. One, what kind of eye surgery are you referring to?
Two: If you are using eye drops every few seconds at the end of the day you have a problem.... please refer to my post from some time ago...

http://forum.dryeyezone.com/forum/dr...bout-eye-drops

[scoelicolor]

Thanks for the link farmgirl , sounds like I may have also developed intolerance to most eye drops that had helped me in the beginning. I will have to try this!

The first surgery would be lower lid punctal cautery, this seems like a pretty simple procedure from what I've read, but drastic since he still hasn't performed tear quality tests like schirmer or osmolarity, or memboiagraphy. He claims the cautery is reversible, but I have read posts on here that say otherwise, so I am skeptical. (He says he will have time to run memboiagraphy at the next appointment, but I've been seeing him twice a month for a year and I'm tired of diagnostic testing being put off, and found a new eye Dr who I will see on Monday (fingers crossed he has more to offer).

The second surgery would be to directly treat my SLK. This is the one I am terrified about..
They remove the excess, loose tissue from the bulbar conjunctiva. Sometimes they use amniotic membrane to help healing. Besides being terrified of eye surgery, my worry is that SLK is usually caused by an underlying autoimmune disease, so I feel like there should be more testing before eye surgery. Maybe this could all be resolved with the right systemic drug treatment or the right artificial tear.

I have tried to ask him questions about everything along the way, at each appointment, but he rushes out the door. I found out the appointments are only meant to last 15 minutes! My longest appointment was 25 minutes, and that included:
him asking me questions, exam, punctal occlusion of lower lids (with complications), prescribing 4 medications, and explanation of future treatment; There's no time for questions! He gets closer to the door as I ask each question until he bolts out the door! anyone else feel they are cut short by their eye specialist? 15 minutes can't be enough time for even the best doctor to treat a complex eye disease, right? I have my fingers that my new Dr allows more than 15 minutes.

As for the underlying disease, so far all my autoimmune blood tests are negative, but today I've just had Xrays to test for RA, more blood-work including testing for Lyme Disease, so we'll see. But each specialist I see (dermatologist, rheumatologist, gastroenterology etc.) tries to change my medications or criticizes the other doctors orders;
For example, my dermatologist said it was strange to be on doxy for so long and that the dose was too low and she wanted to get me off of it by increasing the dose for a short amount of time and then stopping it. I told her that I take it specifically to treat eye inflammation and my eye Dr has no intention of taking me off of it, she sent a new script to my pharmacy anyway, without talking to my eye Dr, and without me approving the change, SMH. She also prescribed a beta blocker, even though I told her I would not take anything that is related to the cause/worsening of DED. This disease is already too bad and beta blockers are some of the most well known for their relation to DED! I'm sure she's great at treating skin conditions, but I went to her because my eye Dr told me to and I can't have conflicting care.

Anywho, I have read that eye surgery is very risky for people with DED because our eye's immune system doesn't work as well as it should because we have less tears, so I'd love to hear if you all think it's something that surgery should only be done if deemed absolutely necessary, or if it can provide relief that is worth it. To me it is the scariest thing in the world, but if it would cure me I'd do it in a heartbeat. (I know cure is a long shot)

Most of my doctors have never heard of SLK, and they don't know about the treatment options for DED in general. Seems a bit disconnected. I know SLK is rare, but it goes hand in hand with DED and I'm super grateful that this community helps me to learn and advocate for myself. Thanks again!

[farmgirl]

OH my, sorry I took so long to respond but I have been in transit from Panama back to dry old Alberta....sigh. I am sorry I cannot comment on the procedure that is being recommended for you but maybe there are others out there that can. It might be a good idea to start a new post looking for those individuals. I do agree though that you are wise to be cautious because the last thing that you want to happen is that you get worse, God forbid. If they are recommending this for both eyes, for sure start with one eye, don't do both together.

Have you had punctual occlusion or cautery on the uppers yet. As far as I know cautery is not reversible so you are wise to proceed with caution. I had the uppers cauterized but have left the lowers because I still hold out hope that I will in time improve with newer treatments. I am scheduled for IPL on Monday and that is a bit scary as well. Not that I expect to get worse but I understand that the gland expression is painful. I would be cautious about cautery on the lowers if you are not cauterized on the uppers yet. I did the uppers because the plugs were irritating but the lowers have never bothered me.

[scoelicolor]

Thanks for sharing farmgirl , hope you had a good trip!

I have never had anything done to my uppers, but my current Dr. recommends plugs/cauterize of uppers to treat SLK, but only if I decide that's what I feel that I need, he does not think any kind of surgery is required right away (unlike my old doctor).

As far as plugs go, I have had such bad luck with plugs that didn't fit, scratched, or disappeared after a couple days that I have told him plugs aren't worth it for me, but I may consider the upper cautery if things don't improve enough on their own.

I have read that some cases of SLK can "resolve" on their own after about 10 years, so it could be problematic if my eyes did correct themselves. Most people don't get SLK until much later in life, so it seems like giving it some time might be a good option in my case. Not a lot is known about SLK in general and I'm not sure if "resolving" really just means remission or lifelong recovery. Having uppers done and leaving lowers could be the best option for me too in case things do change down the road! (fingers crossed for both of us) Thanks for the advice!
I hope your IPL went well and wasn't too painful.

[MGD1701]

I have read that some cases of SLK can "resolve" on their own after about 10 years, so it could be problematic if my eyes did correct themselves. Most people don't get SLK until much later in life, so it seems like giving it some time might be a good option in my case. Not a lot is known about SLK in general and I'm not sure if "resolving" really just means remission or lifelong recovery.

SLK seems serious. I doubt it can resolve on its own
- wise to get a few opinions before too late/complicated to fix, please.

[farmgirl]

SLK seems serious. I doubt it can resolve on its own
- wise to get a few opinions before too late/complicated to fix, please.

I am not sure about that, I just read the following so remission seems highly possible.

In general, the prognosis for SLK is excellent. While the symptoms may last for years, most cases go into remission or totally resolve over time.^[2]

And thank you scoelicolor I am going for IPL treatment 4 tomorrow and it definitely appears to be helping.