My first private consultation

[jlg_uk]

I had my first private consultation today with a guy my optometrist recommended/referred me to. If no one minds, I'll give a summary of it here both for my future reference and anyone else that is interested.

Got a good 45 minutes and didn't wait for more than 15 seconds (I was a few mins early). He asked me some questions, and spent a fair amount of time looking at my eyes. He put in some yellow drops, examined my margins, both sides of my lids etc. Some points I mean to note:

- Getting me to blink gently, he saw indications of lagophthalmos (though I wonder if I was just blinking to gently)

- He said some of my eye lashes were irritating my caruncle

- He saw signs of some lower lid retraction,

- I pointed out the 5 bumps in the tissue under my eye - he referred to these as folicles, and were a reaction to staph (this seems strange to me)

- He said that the redness around my lashes were due to MG problems (lid margin disease),

- He felt I did show signs of rosacea,

- He said I was probably being too aggressive in lid massage and scrubs. I only use a cotton bud, but he said to carry on with the hot compresses, but do little to no massage, and no scrub.

- I expressed concern about MG atrophy which is irreversible. He gave the impression this is inevitable, which didn't sound reassuring.

- While everting my upper lids, he did seem to say there was excessive meibum secretion (upper lids maybe not hitting lower lids fully/properly enabling secretion into tear film?). He said there was some inner eyelid irritation.

- Looked at my tear film, but didn't think it was that bad. I explained it is _very_ variable. I didn't get the impression he was hugely knowledge about the tear film.

- I have probable staph sensitivity, medial rechisis (sp - not sure what this is).

Treatments

1) Weak Steriod for 6 weeks - he felt risk was low
2) Doxycycline (at my suggestion) for 8 weeks
3) Lacrilube for nocturnal lagophthalmos
4) Chloramphenical ointment on lashes (I know Stella does this)
5) Celluvisc PF drops
6) Some strange alternative thing he couldn't remember what it was (pine bark extract http://berkeley.edu/news/media/relea...02_05_98a.html ??)

Other possible things he said he could do:

- Lid tightening to fix the retraction issue - and he felt this would help with putting pressure on the lacrimal gland (I'd need to look into this properly before I'd consider permanent modification.

- Epilating Eyelashes where needed,

- Plugs - but agreed with me this would probably be a bad idea

He was happy to see me again, but this time on the NHS - around January time. I asked about other specialists within the NHS I could perhaps see in the future if needed - he felt corneal specialists/lid disease people were possible avenues for me to be referred to if things come to that.

All in all I was happy at the duration, and I felt listened to for the most part. Seemed happy to work with me to stay on the NHS, and copy me a letter to my GP. Will need to see how these treatments work assuming I can get the prescribed via my GP.

[Guest]

Seems like a really good step forward.

I wish you well with your treatment plan and continued consultation with this Dr.

Keep us posted on your progress.

Ian

[Arcaeon]

Thanks for sharing jlg, I found it pretty interesting as I remember you said your upper eyelids look like mine... so we probably have a similar problem. The staph thing is interesting, right now I'm leaning towards me having a bacterial infection of some kind, cause I've had back acne for AGES now and it's stubborn as hell, it just will not go away.

I've been on doxy for about a year now though and it does nothing, so I must have some resistant buggers. I also tried the steroids , but I dunno what it was, maybe the perservative - I could only stand to be on the stuff for two weeks max. It just made my eyes so irritated and just generally feeling dodgy all the time. It also did nothing to quell the edge of eyelid inflammation. I'm saving money at the moment to fly to New York and see Dr Latkany - apparently he's a world renowned dry eye expert and will be able to give me an accurate diagnosis. Until then though I'm leaning towards a bacterial infection/staph/blepharitis and I'm doing really vigorous (I mean scrubbing like mad for ten minutes or so) lid scrubs every day, it seems to be going well so far.

Also not to take anything away from your progress but I got the impression that your doctor was similar to those that I see... he wants to help, but doesn't really know what the problem is, just taking educated guesses. I've heard that Dr. Latkany can identify ocular surface and eyelid conditions in like 5 minutes. But, like you said, the fact he gave you 45 minutes is really encouraging. I also didnt understand what half your treatments were lol, such as Epilating Eyelashes, and Lid tightening to fix the retraction issue , but please keep us up to date on your progress, it's really interesting to me.

Cheers

Tommo

[sazy123]

Have you tried azasite for MGD caused by straph bacteria?

Just a thought, dont think its helping me but i dont think bacteria is causing my MGD.

[brd888]

azasite

Sazy,
Did you get Azasite eventually? How?

Arcaeon,
I don't think doxy is meant to help with bacterial infection - isn't it used in MGD for its anti-inflammatory properties?

Bruce

[irish eyes]

Hi Sazy

Any enquiry I have made about Azasite has had the response of `...it's not ready to be marketed in Europe as yet......'.

[eva b]

thanks very much for such a comprehensive report...I'm sure everyone appreciates it as much as I do. Some very interesting points.

I can't remember exactly what type of specialist he was - something to do with the eyelids themseleves, I think?

Anyway, good luck with your treatment, and do keep us informed

[stella]

Hi Jlg
I'm really pleased you did find someone privately, and who takes such an interest in your DE - that is like gold dust for us in UK
and that you now have this facility under the NHS
Regarding chloramphenicol eye ointment to lashes - that is really interesting , 'cos i found this out by accident when it was prescribed by my GP for a chalazion i had and it cleared that up within a week and was so good for my lid margins at night that i have used it ever since - every night for the last 11 months (I have not been as good lately mind, and am beginning to think that i am becoming immune to it !! please God no!!)
Anyway it is good for us in GB to know that there is a good ophthalmologist who takes such an interest -in the midlands
Would you recommend him on Rebecca's list of good eye Doctors?

[irish eyes]

Hi Jlg

You mentioned epilation of eyelashes where needed - did the consultant comment on how successful this is - or do they grow back pretty quickly.

One consultant (NHS) suggested it might help me but I didn't really `grill' him on it.

Thanks for providing the comprehensive summary by the way.

[jlg_uk]

Hi all

Thanks for the feedback and wishes - much appreciated.

Azasite - he said he'd not heard of it, though I'd like to try it given reports are often (not always) positive.

Recommendation - I don't think I'd recommend him just yet as I've not started the treatment (waiting for my GP to get a letter so I can get the Rx's on the NHS), and he is more of a lid specialist with some emphasis on surgery etc. Tear film and the wider aspects of DE I felt were not something he was an expert on.

chloramphenicol eye ointment - yes Stella, I thought of you when he mentioned it! I'm yet to try it, so I'll be interested to see how I fare on it

epilation of eyelashes - he didn't remove them (though he semi-offered), but he pointed out the irritation they were causing to my caruncles ant they would grow back, so I think I'll have to buy some tweezers and take care of them myself. I've got very full lashes, so I wonder if it might be a good idea to thin them a little too? Lash care not very manly - I'll have to have a beer and watch some sport or something afterwards.

The consultation was £140, but I don't think that's too bad if I can folliow up on the NHS.

Still not sure about the sensitivity to staph "follicles" he identified my bumps in tissue under my eye behind my left lower lid as. But then according to http://www.eyesite.org/eyeallergy.html:

I check for evidence of allergy on the inner lining of the upper and lower eyelids. Allergy causes numerous minute swellings of the lining called papillae and follicles.

So maybe this is evidance of allergy?

Still not sure about the steriods for 6 weeks perscription - I guess I'll have to see how this goes but am wary of the risks (which I'm not fully clear on).

Still - I'll hopefully begin these new treatments next week and I'll understand my condition more one way or another.

[jlg_uk]

Hi Jlg
I'm really pleased you did find someone privately, and who takes such an interest in your DE - that is like gold dust for us in UK
and that you now have this facility under the NHS
Regarding chloramphenicol eye ointment to lashes - that is really interesting , 'cos i found this out by accident when it was prescribed by my GP for a chalazion i had and it cleared that up within a week and was so good for my lid margins at night that i have used it ever since - every night for the last 11 months (I have not been as good lately mind, and am beginning to think that i am becoming immune to it !! please God no!!)
Anyway it is good for us in GB to know that there is a good ophthalmologist who takes such an interest -in the midlands
Would you recommend him on Rebecca's list of good eye Doctors?

Hi Stella. I've been looking into the ointment and according to http://www.patient.co.uk/showdoc/40025037/ it shouldn't be used long term. Of course I'm not a doctor - but also when I went into Boots and asked for it they wouldn't give it to me for lid margin disease - only baterial conjunctivitis (even though I said my eye doc recommended it for me).

Just thought I'd let you know. Also, you use is externally not in the eye itself right?

[jlg_uk]

Just been to a different pharmacy, and gave them the reason I needed it that they wanted to hear. This time though, it turns out you can't have the PF version without perscription - but you can get the non-PF (BAK) version.

Seems barmy to me. Plus they also said it was £24 for 20 PF vials!

[stella]

Hi jlg - thanks for the info -
I use the ointment ;therefore it is Pf free; as ointments dont have preservatives in them(i understand micro -organisms dont thrive too well in a greasy medium hense no need of preservatives)
There are chloramphenical drops; and minims do a PF version. I have never used the drops only the ointment
I use this ointment v sparingly and try not to get it into my eyes
eg I put little of it on a q tip and go along the lid margins on one eye then more on the other end of the q tip and do the other eye (like using eye liner)- once in 24 hours only, before bed, and after using heat ,massage ,and doing the lid margins with occusoft foam, then rinsing
I dont think i get much of it in my actual eyes 'cause my vision does'nt blurr ,which it would if you put ointment into your eyes

I was recently reviewed by a senior registrar at the corneal clinic in the teaching hospital near where i live and told her what i was doing -
She sort of hmmm'd a bit, but said it was OK ,since i was using so little ,and signed me off with the agreement that if i was in difficulties i could come back anytime.(I had told her that i felt my condition was "under control") I felt that was fair enough!
Also my GP told me - the reason they have now put chloramphenical eye ointment off Rx only , is because it is virtually ineffective against mico- organisms - and she was of the opinion that i was probably only finding it helpful 'cause of it's emolient effect !
Well for whatever reason,it is helping me and i feel i cant give up what i am doing or my life would be hell again - so there we are
I have considered testing the GPs theory and trying vasaline only, but i am a bit afraid of clogging the glands as it is thicker than the ointment and not specifically for eyes
My optician was quite enthusiastic about the ointment - He was at a loss to know how to help me ,so was glad i had found something that worked
Cheers

[jlg_uk]

Thanks for your input on this one Stella.

I finally got some this lunchtime and will apply it using a cotton bud twice daily for a few weeks. I've not got the steriod drops yet - and I'm still not convinced about using them for 6 weeks, and I understand you are supposed to be monitored during steriod use which my ophth didn't suggest or arrange?

I'll ignore the "only use for 5 days" warnings on the chloramphenicol ointment box - and see how I fare for a few weeks before starting the more scary steriod drops.

[irish eyes]

Hi Jlg

The strength of the steroids and how often you need to use them may depend on the level of inflammation in the eyes.

You are wise to be wary but don't be scared of them. The eye doctor should always test the pressure in your eye; possible side effects of steroids are raised ocular pressure - that is why a person should be monitored if steroids are going to be used for long periods. The goal should always be to tail off using them.

I've just collected my emergency supply from the GP; if iritis (uveitis) flares up, that is the only course of treatment open to me. I only wish it got rid of the blepharitis but it doesn't.

Good luck with it all.