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  • Cautery Help

    Please help! I have cautery scheduled for Thursday and am scared my eye situation will become even worse.

    Brief history:

    27 y/o female. Symptoms began in 2013 at 22 years old. I woke up one day to extremely dry, painful eyes, and they were dry every single day since then. For a few years I only experienced extreme dryness in the morning, but otherwise they would go back to normal after about 10 minutes of searing pain. Then I moved and my life spiraled out of control, my quality of life tanked, and I was recently so close to suicide that my own thoughts scared the crap out of me. I was at the point where I was putting in drops approximately 250 times per day, approximately every 4 minutes, plus all throughout the night (this has led to extreme insomnia, I'm so so so tired). I lost a lot of friends, could not make any friends in the new place I was living, people stopped respecting me at work because I couldn't have a conversation because I'd always but drops in and was always visibly uncomfortable. My appearance went down the drain - coworkers from my old job wouldn't even recognize me anymore.

    Anyway, both my mom and now my baby sister (she's 25) have similar issues, though thankfully not as extreme. My sister's symptoms are starting out exactly as mine did. My mom's symptoms surprisingly started maybe 6 months or so before mine (we weren't living in the same place, I moved to Boston for my career and previously lived at college), so hers started in her fifties after menopause - but more specifically after she went under anesthesia for an unrelated surgery.

    I digress, I've tried the following: Every OTC drop and gel available, including those from overseas, Restasis, Xiidra, Lacricerts, doxycycline, various steroid drops and gels, Meibomian Gland Probing, goggles, humidifiers, Omega 3s (many types), Flaxseed, Sea Buckthorn Omega 7s, eye drops with and without preservatives, Muro 128, warm compresses (give me a break), cold compresses, I'm quadri-plugged, Tranquil Eyes, Lid Scrubs, Acupuncture, went to a consult for PROSE - they said I wasn't a candidate (that's a different, laughable story), Clindamyasin, Vitamin A supplements, Ox bile to help absorb Omega 3s (I had my galbladder removed when I was 18 due to a severe infection brought on my mono - I was in great shape, 5' 6" and 119 lbs - doctors were amazed - that's a different story though), I do organic coconut oil washes every night and use diluted tea tree oil on my lashes and also use Xiidra at night which keeps my eyes completely closed. These last three...things (coconut oil washes, tea tree oil, and Xiidra at night (the viscosity itself, not the actual medication), have definitely helped a lot, but with those three I'd still put my drops in about 100 x per day instead of 250. I'm now on the Autoimmune Protocol and have been for about 10 weeks now, it's crappy but I think it's actually really really helping - I'll write a post about it after the cautery. Tested for Sjogrens and other auto-immune conditions and they were all negative. Oh, I also was getting Staph infections all the time (my legs below the knee are really scary to look at) and I was also itchy everywhere all the time. Both those issues have ceased since a few weeks into AIP (something I always thought was quacky and dumb). This is not an all-inclusive list, it goes on.

    Anyway, my upper plugs fall out ALL THE TIME and it's killing my time, my job, and my wallet. I have cautery lined up but I'm wondering if I should wait until after my wedding in 5 months to do it - I finally finally finally have been having more long term significant success (again, I'll write about it, it's extremely long and complicated) and am worried that I'm going to be miserable at my wedding due to my issues. While vain, I would love to wear contacts and eye makeup for just a couple of hours for the wedding, and am worried that I won't be able to - I have way bigger fish to fry (like the fact that we probably can't have children in the future because I can't even take care of myself), or will I be in absolute agony forever - but still something to think about.

    PLEASE HELP! What has your experience been with cautery? Please tell me if you have uppers, lowers, if you have paired with plugs, and how long you have been plugged for. I have to get a plug replaced about every 2 weeks, and it takes about 1.5 hours by the time i get to the doctor's, wait, go through the technician process, and get the stupid plug replaced.

    Thanks,
    J

  • #2
    HI Jessy:

    I will speak to your question because I have had upper cautery. I say...do it now if that is what you have decided to do. I did my uppers because I felt I would always need plugs and the uppers were not really comfortable. I left the lowers because they were easy to tolerate and I was hopeful that some day I would not need to be quadra plugged and I could at least take the lowers out.

    As regards my experience, the procedure was not painful but was not what I would call comfortable. In the aftermath I looked like I had gone 2 rounds with Mohammed Ali and clearly lost. The swelling and bruising was not pretty but I was able to attend a car rally on the weekend, although making apologies for my appearance. I see no need for you to wait until after your wedding, that would serve no purpose.

    If you are putting drops in that often, I might suggest that lack of hydration is not your problem. I would suggest that possibly what you are feeling is a result of inflammation from all of the 'stuff' you are putting in your eyes and all that 'stuff' is disrupting your tear film and further encouraging the cascade of inflammation. Here is a post that I made some time ago that I would like you to read...give it some thought.


    I have made a discovery about eye drops

    17-Dec-2016, 19:29
    I have suffered from severe dry eye for 7 years now. I have all four puncta blocked and regularly use goggle glasses, eyedrops etc. If there is something out there for dry eye I have tried it (pretty much) What I have recently discovered however has been a game changer for me. In the past I have read about people whose doctors told them to 'quit putting stuffin your eyes and they will feel better' and I always thought...yeah, well you try to live with my eyes for a day and see how far you get.

    As time went on I increasingly have developed intolerances to whatever I put in my eyes. Gels, preservatives, contact lens solutions what have you. Systane ultra was my go to eye drop but recently even that did not seem to alleviate my burning grittiness for more than 20 minutes. In desperation (and to save some $$$) I started to use some of the non-preserved saline that I had purchased when I tried scleral lenses. Well, what do you know, my eyes feel ever so much better. This tells me that at some level, and it wasn't really obvious, I had also developed an intolerance to non-preserved Systane Ultra. My greatest fear had been realized.

    Not only has this discovery saved me a fortune and at the same time made me more comfortable, it is also practically free. What I am using are the 0.9% saline nebulizer Inhalation solution dispensing cartridges available in 5 or 3 ml. 3ml is probably prefect as they are easily used up withing a week. I am able to cap them with the lid off of a non-preserved Biontears (for Addipak) and systane or Refresh work (for Ritedose) dispenser. As long as I use them up within a week and keep the tip clean it is all good. I have tried 2 types either Addipak or Ritedose by Mylan. If , on occasion, I feel that the saline is drying my eyes too much or disrupting my tear film I sneak in a drop of some other lubricant that I have not overused and I am back on track, as long as I keep it to about 2 or 3 times a day. Plus I use the serum drops in the am and pm.

    A box of 100 of the 5ml cartridges was $28 Cdn dollars and my local druggist ordered them in. The UPC code is 03786 98601 for the Rite Dose 5ml vials if you want a druggist to order them in. Not sure about the 3 ml but I found it online under Mylan.

    For 'not putting stuff in your eyes' this is as good as it gets.

    Comment


    • #3
      Thank you Farmgirl, this is helpful information.

      I guess the reason for potentially waiting until after the wedding is because I still have some good days (and lately have been having many), and I want to really really try to have a good eye day on my wedding, so I'm worried about the timing of it. But you're right, I might as well,

      So did you find that cautery helped with your condition? How about cautery vs. the plugs? Have your puncta opened back up? I really can't stand my Oculoplastic surgeon, she doesn't take my condition seriously and she doesn't do her due diligence on my case and just talks over me and jumps to conclusions. It's so bad that I have to bring my fiance in the room with me just to have someone to vouch for me. I'm also nervous that if they open back up that she won't believe me and therefor won't re-perform the surgery.

      Edit: She's the only Oculoplastic surgeon in my network that insurance will cover. Yay. I'm confident in her ability to perform the initial surgery, I just can't stand her personality, bedside manor, or lack of a discovery process.

      Thank you also for your post on putting stuff in your eye. When I have more time (I'm at work atm), I'm going to re-read your instructions thoroughly and try this. I will say though, that the theory seems quite logical, but based on patterns with my eyes, I'm not sure this is what is happening. The reason I say this is because when I have a great eye day, lately I barely need drops at all. Lately, other than the morning or if I'm falling asleep on the couch, I won't need a single drop. I think I have some food allergies or sensitivies because I have never made so much progress since being on this stupid (albeit seemingly effective) diet. I would think that if my issue were too much stuff in my eyes that I wouldn't have periods at all of relief where I don't need to put anything in my eyes...But again, I need to try your suggestion because I've never heard of this before and I've tried all the super weird suggestions already (not that your suggestion is weird, it's more unusual - trust me, my whole routine is super weird).

      Anyway, let me know about the above questions on your cautery experience. Thank you!

      Comment


      • #4
        Originally posted by JessyBee View Post

        Brief history:

        I do organic coconut oil washes every night and use diluted tea tree oil on my lashes and also use Xiidra at night which keeps my eyes completely closed. These last three...things (coconut oil washes, tea tree oil, and Xiidra at night (the viscosity itself, not the actual medication), have definitely helped a lot, but with those three I'd still put my drops in about 100 x per day instead of 250.
        The reason that I was suggesting that you might have a problem with chemical sensitivities is because I was responding to your assertion that you are now only using drops 100x per day not 250 since you have been doing the above 3 things. Now you state that you barely need drops at all. That is a very different story, so if you don't need drops then that is great, but what is it? Are you using drops 100x per day or barely at all because those are 2 very different statements. Anybody who is putting drops in 100-250x per day has a problem with what they are putting in their eyes. The advice I gave you would not apply to someone who was barely using drops.

        Having said that I am happy that you are having good days to the point where you don't need drops.

        With regards to the cautery no mine have never come undone and since the plugs have been a lifesaver the cautery was a reasonable thing to do. If you find that you are comfortable with the uppers plugged and have problems when they fall out then it seems reasonable to assume that having them cauterized would be of benefit. You do understand that cautery is permanent I wouldn't recommend doing it if there is any hope of recovery. If your situation is long standing and you feel the plugs are a lifesaver then by all means bite the bullet and do it.

        Since this is an up and down situation what you feel like on your wedding day will not depend on whether or not you had cautery. What you will be assured of is that you won'l lose a plug just before you walk down the aisle.

        Comment


        • #5
          Ah yes, I can see how what I said is confusing. Overall my condition is up and down - I slowly began needing drops more and more (years ago), and then about a year and a half ago I was up to 250x per day. Then I started doing coconut oil washes, tea tree oil, and Xiidra at night and reduced it to ~100x per day. I'm now on the Autoimmune Protocol (along with coconoil oil, tea tree, xiidra) and, *with all 4 plugs in* I'm down to hardly needing drops at all. If I lose a plug, I'll be anywhere from 15 to 50x per day in that eye (while on AIP). The fact that I don't consistently have to put 100 to 250 drops in (like one day yes, another day no, though again, lately it's been much better) makes me think that it's not a reaction to what I'm putting in my eyes - especially because, once I have the plug replaced, I magically won't need as many drops(**while in conjunction with AIP - if I'm not on AIP and have the plug replaced I still need drops that many times). Knowing that one day I can hardly need drops and the next (even randomly) I'll need them a lot makes me think it's not drops (or other stuff in/close to eyes). Phew, please excuse the drawn out detail, it's very confusing!!!

          But anyway, I took your advise and on Thursday I had the surgery!!! So far so good - my eyes are doing great but I also know (based on others' experiences) that there can be quite a bit of "reflex" tearing for a while after, and that sometimes the eyes adjust.

          For more history, I was quadri-plugged beginning in June of 2016. It was seriously a MIRACLE and I thought I was cured. I had substantial epiphora - a mild inconvenience compared to the hell I was previously in (I also went from drops 250x to 3x per day immediately following the procedure - I know it makes no sense, the whole thing makes no sense). But anyway, after about 10 weeks I noticed less and less epiphora - by 11 weeks I had no extra tearing at all but was still comfortable. By 12 weeks I was back to...not quite square one, but probably square two. Still a level of hell - could not drive, could barely work, etc., etc.

          Then, in January of 2017 my upper plugs fell out (one at a time within a couple days of each other), and my doctor was out of the country for 2.5 weeks. The soonest they could get me in after she came back was not for 3.5 weeks. So I was in another depth of hell until the upper plugs were replaced. By then it had been almost a month with only bottom plugs. The top were replaced and BOOM - epiphora! Isn't that strange? So anyway, after that, I experienced a similar situation to the first time I was quadri-plugged, except less exaggerated. I was substantially more comfortable for about 2 months, and it slowly tappered from there, back to square 2.

          In January of 2019, despite my skepticism surrounding Functional Medicine (and issues with the fact that that there don't seem to be many double-blind, randomized studies, mostly only "circumstantial" hypotheses with little qualitative statistically-significant data behind it), I paid a lot of money to try an alternative method. I had a ton of testing done and then eventually started AIP in late January of 2019. About 3 weeks in I started noticing less and less symptoms. It's important to note that this doc also started me on Low Dose Naltrexone for pain management - this could also sway what has been happening.

          Anyway, I thought the history was important considering that I'm thinking something similar is happening with the cautery. When I had the plugs put in, during those months of bliss, I would wake up with TONS of dry crusty mucous in my eyes. I literally would leak gross mucous and people would look at me funny and when I checked the mirror, sure enough, I had mucous leaking. I am currently experiencing both epiphora and increased mucous - so I think I will know for sure what's going on after about 2.5 - 3 months. It's a long time to wait but I will enjoy relief for now.

          Should I need to go back to using drops more than maybe 10x per day I will be ordering your specs :-) Thank you FarmGirl! Let me know if you experienced anything for a little while after cautery and then experienced a tappering effect or if everything was exactly the same for you after. Did you have any excess mucous?

          Comment


          • #6
            Hi Jessy: No, I didn't experience anything like that. In fact I have never experienced overtearing as my primary problem is Sjogrens and so I am aqueous deficient. I just get a measure of relief from plugs so will probably always need them.

            I hope that you are happy with your results. Did you bruise much?

            Comment

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