LUPUS UK

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Has anyone had cauterisation of their tear ducts?

Would be interested to hear from anyone who has had their tear ducts cauterised. My ophthalmologist is proposing this as a more permanent treatment for my dry eyes. I have had punctual plugs put in but one has already come out! If you have had cauterisation done, could you tell me how you found the procedure and how long it took for eyes to recover? Would there be a problem with driving home after the procedure? Did you actually find it helpful for your dry eye symptoms? I'm due to have a review appointment with my ophthalmologist at the beginning of May and would like to know a bit more about what is involved in this procedure before then.

Thanks for your help.

Gemim

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gemim

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Hello! Yes - I just had them done! Search for my post on the sjogrens sRuk hub. It’s all in there... D

Thanks DJK99. I had a look but only see your post of a couple of months ago - before you had the procedure. Not very good at navigating my way around these sites. What was the title of the post written after you had the procedure? Sounds like you have a lot going on!

Gemim

Yes - read all the responses.

Have just read all 14 responses but they are all written before the procedure two months ago. Never mind. Appreciate you replying anyway.Gemim

Hey genim, if you join the group there. You can see all 31 responses from DJK99. It's really thorough.

I'll try and give you the link....

healthunlocked.com/sjogrens...

Hopefully this works

Oh thank you - I thought I was being brain foggy more than ever as pretty sure all the conversation was in there. Great, thanks for doing this so Genim can read it all.

It says you need to be a member to read.

That's trueBut you can always join and unjoin from the group, it takes a few seconds to do so if that's your concern x

Oh, I'm sorry - I really thought I was talking to the same person AFTER my procedure too. Let me have a look and see. Sorry.

Yes [please do as Lottie Lou suggested.. but I'm here if you have any other questions after that, absolutely. Anything to help x

Thanks, DJK99. With LottieLou's kind help have managed to navigate my way to all the responses. Sounds like it was not an easy ride for you! Trust things have settle down now and you eyes are feeling more comfortable. In my case, it would only be the bottom tear ducts - not all 4. Not sure if my ophthalmologist will propose doing it at my review appointment or if it would have to be prepared for like a surgical procedure. Anyway, have found it helpful to know a bit more of what is involved.

Thanks again for sharing your experience.

Gemim.

Yes, sorry - just thought you'd be able to see all the responses - you have to join to see things obviously but presumed (sorry) you'd be a member there too - have you Sjogrens? Or Sicca?

I have to say the injection was the worst thing - but then I don't know what the actual cauterisation would have been like without it... I think they both hurt either way - but at least you wouldn't have the ruddy bruising if you forgo the injection... Have a chat with your clinician and see what he thinks.. it might be they won't do it without injection as high risk of moving with the pain actual cauterisation... but then I moved with the first injection as it hurt.. and hence a big ole bruise ;).

But, yes, everything is ok now. As you could see from my responses. Just another little hurdle that we soon forget about..

All the best to you Gem!

ps. here if you need any further info/advice... such as, as for a calming pill! I did and it was rather lovely... didn't stop the pain tho.. and neither did the "numbing gel" they put on pre op! It's over so quickly.... so I hope not put you off.

Thanks, DJK. So glad to know that things have settled for you now. I have Sjogren's - have had the Anti-Ro antibodies since my diagnosis with SLE over 20 years ago. Didn't have a lot of problems with it, just a bit of dry eyes, until I encountered Covid (or another viral infection) early in the pandemic. That plus all 3 Covid vaccines means that I now have small fibre neuropathy, very, very dry burning eyes, dry mouth, difficulty swallowing, blocked nostrils, negative pressure in middle ears and have had very little energy for all of 2021. Thankful that things have started to improve over the past few months. I think that the effect of the vaccines is finally wearing off but off course all these bits of me still need attention. It has been a challenge trying to get to see all the different specialists I needed to see during the pandemic with the super long waiting lists for each one. Seems like I am now making progress on that front - getting that first referral appointment is the longest wait so trust things move along a bit more 'normally' now.

Thanks again for all your help and info.

Gemim

Believe me Gemim, I hear you! If you read my biog you'll see what I mean... It's all very hard... but you gotta do what you gotta do. I hope things continue to improve for you. Hugs. D

I just read your post and all the exchanges. It sounds terrifying...😱 I have a phobia about doing anything to do with eyes. You are brave!

Not sure about being brave! Have never had much done to my eyes yet so don't have any past bad experiences. Time will tell how 'brave' I turn out to be! Gemin

Well when your eyeballs are sticking to your eyes FAST throughout the night, despite using the vaseline type gunge that is Hylo Night over and over, and all manner of eye drops every hour in the day, you kinda man up ;).... I didn't want to lose my sight and was agony so I took their lovely calming meds and got on with it.. Actually yes, I AM brave. But then I had the mother of all mastectomies followed up instantly by a horrific haematoma so got opened up again - last Sept,... and 3 years ago had an awful bilateral severe lifelong bunion op.. I can't tell you how ruddy nightmarish that was during the op on ONLY SEDATION (what???! They really should have put me out) and then the major agony for weeks afterwards and trying to live alone on crutches, closely followed by... my first diagnosis of breast cancer. I'm currently on my second recurrence in 6mths, facing more surgery on 22nd... and only sedated as I've had two general anaesthetics in the last 6mths so thought, with all my other health stuff, they should keep me awake. Hmmm... I have certainly grown a pair in the last few years... er, not boobs obviously! Yeah - big up to me! THANK YOU.

Hi Gemim, I too am looking into improving my dry eye condition. I actually haven't cried tears in seven years. Sjogrens came on right after the stroke (that I had mention in my previous post to which you kindly responded). Have you heard of Scleral Lens? I just found out about it and plan to ask the ophthalmologist next month during my yearly consultation. He had never mentioned this to me. Only plug which I don't want to do. Presently I am getting on with Hylo Forte drops and manual acupressure (two to three times daily) which I sometimes alternate with warm gel eye pad. But as my eye sight is getting gradually worse, this Scleral Lens sounds very interesting. Do look it up. Best.

Is that the contact lenses thang? My previously eye doc optician recommended but I forgot to tell my ophthalmologist, and the rest is history! She said it works very well... personally I didn't fancy putting anything solid in my poorly eyes.. so that's probably why my brain fog brain totally forgot it!

Thanks, Paprika60. I have never come across the Scleral Lens but will certainly look it up, At the moment, I am using Hyloforte drops followed by Actimist spray on the eyelids, heated eye mask once a day followed by massaging the eyelids and Xailin night ointment - at night. Not so much burning since I got the eye plugs put in. Would be good to have something more permanent which doesn't move around! Will check out the Scleral Lense.

Gemim

Oooo sounds like you need Hylo Night pronto Gemim. Look it up!

Thanks. Have looked it up. Do you find it is better than the Xailin night? Have you tried both? I was recommended the Xailin night ointment and it is certainly more long lasting than the Hyloforte Drops but if there is something better would be happy to give it a try. Appreciate all your help and suggestions.

Gemim

Not tried the Xailin Night. Is it like vaseline? If so I guess it's the same type of thick stuff that lasts longer, yes. My former ophthalmologist also started me on VisuXL (I think that's the name) which repairs eyes too. I found using the drops every hour (have one in the bathroom, one by my chair I sit in during the day and one by sofa for when watching tv) really helped too as you'd expect. And also having a humidifier on all day and night.. plus drinking water all day as I'm always thirsty as I presume you are with the sjogrens.

Have you joined the British Sjogrens assoc? bssa.uk.net They send you a lot of really useful info when you join and you can access their booklets on their website too. I found it very helpful.

Thanks D. Appreciate all your advice. Trust u have a good Monday! Gemim

I may have missed it but are you on Pilocarpine tablets? It made a big difference in dryness of eyes, nose and mouth. Just hot flush for 20 mins after taking three or four times a day with food. I used to get bowel issues with it (diarrhea) until I realised to eat a bigish meal and then take it or split tablets up into smaller bits and take with less food more times a day. You may already know all this anyway but just in case.

Thanks Dg70. I am not taking Pilocarpine tablets. I did ask my rheumatologist if I could try it last summer when all my symptoms were at their worst. He said that it was very hard to tolerate, so he tried me on carbocistene instead. I had really bad stomach problems with that and had to stop it. My stomach still hasn't recovered so have no particular desire to risk further GI problems. To be honest my stomach is now causing me more problems than my dry mouth at this stage but do appreciate your advice re Pilocarpine if I do end up trying it. Thanks again.

Gemim

Hi gemim, I had both tear ducts cauterised at the beginning of the year. The procedure itself wasn't too uncomfortable but I've got quite a high pain threshold anyway. Apart from an initial redness I've had no problems since. Got antibiotic ointment for the first week after the procedure.

I continue to use Xailin at night and my use of HyloForte is now down to a couple of times during the day. I'd say it's worth getting done, especially if you've found that the plugs helped with dryness, as it's a hassle having to keep going back when the plugs fall out.

Best of luck

😊

Thanks, Lupieibbie. Really helpful to know of your fairly positive experience.Gemim