Deciphering doctors letters

[poppy]

Can anyone help me work out the meaning of the latest eye doctors letter I am reading.

TBUT of one second - OK I figure out this is low but is it bad enough to damage my vision in the long term?

"A great deal of vascularisation" - it's not clear what part of my eyes the doctor is referring to here. He could be referring to my eye lids as the previous sentence talks about lid margin changes, but I am not sure whether vascularisation of the eye lids makes sense or is he talking about my corneas (surely if referring to my corneas this is very bad!?)

Thanks for your help

[littlemermaid]

http://dro.hs.columbia.edu/cornealnv.htm Search on corneal neovascularisation. Unusual veins developing on eye surface, presumably in an attempt to nourish it, particularly visible at white of the eye/iris join (limbus) as the veins develop across the clear cornea surface.

Mermaid has neovascularisation from chronic red inflamed dry eye, only controllable with steroid, like you maybe. I can also see this as bumpiness and greyness on the dry sclera (eye white). Ophth also sees this as patches on sclera where fluorescein dye (that yellow one) sheds off eye surface. This is a worry and needs careful monitoring to preserve the eye surface and tear prompt.

I wanted to see this myself and get a record of progress, so I got an optometrist to take photos - very, very, very useful. They do retina and corneal surface, different angles to show the veins. The optometrist/optician has a camera attached to the slit-lamp microscope and a computer screen for viewing. UK big chains do this, charge £12. Ask for photos to be sent to your email as .jpg attachments. Better resolution, permanently in your possession. If you want to consult an ophth you can email with .jpg image and queue-jump into clinic. Optician should give you monitoring and referral as well.

Now, I've got 'slight' neovascularisation with some corneal opacity on the iris margin from overwearing old-fashioned contact lenses, which is totally not a worry. So, there are very various degrees of concern.

True, they also say vascularisation to mean new veins growing on eyelids but more often say lid margin telangiectasia for that. We are wiping the closed eye with damp warm water cotton wool after steroid drops to prevent that happening in long-term use.

TBUT of 1 second - what's the reason they're not using punctal plugs? Does Dr C's letter give any diagnosis on causes?

These are just my thoughts, sorry if I'm wrong. I'd be down the hospital eye clinic again making a nuisance of myself on a regular basis - have you got an appointment? GP and the high street optician of your choice can help with this. The vascularisation will freak out the optician so much you will be straight in to your consultant of choice.

[poppy]

http://dro.hs.columbia.edu/cornealnv.htm Search on corneal neovascularisation. Unusual veins developing on eye surface, presumably in an attempt to nourish it, particularly visible at white of the eye/iris join (limbus) as the veins develop across the clear cornea surface.

Mermaid has neovascularisation from chronic red inflamed dry eye, only controllable with steroid, like you maybe. I can also see this as bumpiness and greyness on the dry sclera (eye white). Ophth also sees this as patches on sclera where fluorescein dye (that yellow one) sheds off eye surface. This is a worry and needs careful monitoring to preserve the eye surface and tear prompt.

I wanted to see this myself and get a record of progress, so I got an optometrist to take photos - very, very, very useful. They do retina and corneal surface, different angles to show the veins. The optometrist/optician has a camera attached to the slit-lamp microscope and a computer screen for viewing. UK big chains do this, charge £12. Ask for photos to be sent to your email as .jpg attachments. Better resolution, permanently in your possession. If you want to consult an ophth you can email with .jpg image and queue-jump into clinic. Optician should give you monitoring and referral as well.

Now, I've got 'slight' neovascularisation with some corneal opacity on the iris margin from overwearing old-fashioned contact lenses, which is totally not a worry. So, there are very various degrees of concern.

True, they also say vascularisation to mean new veins growing on eyelids but more often say lid margin telangiectasia for that. We are wiping the closed eye with damp warm water cotton wool after steroid drops to prevent that happening in long-term use.

TBUT of 1 second - what's the reason they're not using punctal plugs? Does Dr C's letter give any diagnosis on causes?

These are just my thoughts, sorry if I'm wrong. I'd be down the hospital eye clinic again making a nuisance of myself on a regular basis - have you got an appointment? GP and the high street optician of your choice can help with this. The vascularisation will freak out the optician so much you will be straight in to your consultant of choice.

Thanks as always for your helpful post LM. I've never heard of needing to wipe the steroid from the outside of the eye after use? Quite often I will get the drops rolling down my face etc. Is this bad?

I've never had an eye doc suggest punctal plugs to me before Dr C, who suggested plugs although he wanted to try other things first, I think because I have so much inflammation despite steroids. I am so angry that the useless doc I saw first off didn't do plugs because my eyes were not nearly as bad (they responded really well to very short bursts of steroids) and I might have avoided this whole mess. Dr C is confident that I have rosacea and severe MGD caused by rosacea.

I am going to see the hospital eye clinic in a couple of weeks, and I'll take Dr C's letter with me. He mentions plugs and probing if restasis doesn't work or if they don't want to prescribe it. I at least should be able to get the plugs out of the hospital eye clinic you'd think.

It seems plugs are offered to almost anyone even with mild dry eye in the states, but in the UK and Australia they are seen to be a "last resort" by which time the eyes are so bad the damage is done.

[littlemermaid]

Yep, LM just got lower plugs after 3y , they are working out OK, even though she is still a bit bacterial and we are using antibac eyedrops. Still wondering if the tear film is a bit toxic so we try to keep flushed without over-dropping. Plugs was a difficult decision, there are pros/cons.

Similar, she is chronic MGD + reinfecting rosacea of unknown origin, with a good dose of initial incompetence. I want you to know we are spiralling to improvement on usual MGD treatments, 6 tear substitute drops/day, FML steroid drops reduced to 2/week, unless we get bacterial flare-up which we treat. Due to finally finding an interested surface disease ophth. (Like you, at one point she was 3/day prednisolone, serially discharged, 'corneal specialist' ophths stumped, did not advise on MGD treatment or tear substitute drops.)

What is Dr C suggesting for treating the MGD? are you still taking oral doxycycline? compresses? what tear substitute drops?

Is there anyone in the hosp clinic who seems keen who you can ask for? Otherwise, it's doctor-shopping again because you need someone to work with.

Why not ask the anterior segment or inflammation consultant for his advice on where he would go for the best treatment, put him on the spot? Sometimes I write to these people because I am rubbish at consultations. In clinic, I also ask innocent-sounding questions to find out what they don't know: 'why don't you use punctal plugs for this?' 'at what point would you use autologous serum or scleral lenses?' 'is the vascularisation worsening?'.

Their job is to refer onwards and upwards if it's not going well, so if they've been stumped, maybe ask about your next options through them, there will be a protocol. Maybe say 'it's getting much worse, isn't it?'

Maybe fax/post a copy of the Dr C letter beforehand with a request for advice at the appointment? It's a question of judging how to be effective in that ophth department setup, maybe get them to refer you on or come up with a plan of what's available to you regionally, whether you need to travel. Otherwise, they feel they have to treat what's in front of them and don't think round the problem.

Could you do Dr C every 3m? He recommended somebody else between appointments? We travel a lot to see good people now. Hope your co-care arrangement works out, could be good.

We've done some major dermatologist-shopping. Are you on http://rosacea-support.org/community/? Can you find a good derm in the same hospital as the eye clinic? GP should be working with you on finding specialists (been through 5 GPs before I found one we like). Treating the skin oral/topical might alleviate the eyes but you need a derm with experience and skill to work with because rosacea is so sensitive to the individual, preferably someone with experience of serious eye involvement. Ask the eye docs, they should be referring this to a derm.

Yep, we just didn't like the steroid spreading around where it's not needed in case it does something to surrounding skin in the long term (thinning, veins). We close the puncta for 15 secs (used to) to make sure it doesn't go in the sinuses. Seems best.

Any thoughts what might be rosacea triggers for you? have you got any contact sensitivities around the eyes? diet flare-ups?

Hoping you can get a good management regime + improvement + some good ongoing doc support.

[poppy]

What is Dr C suggesting for treating the MGD? are you still taking oral doxycycline? compresses? what tear substitute drops?

Dr C writes that the MGD is secondary to the rosacea and I think his idea is that controlling the inflammation will control the MGD. I tried 3 months of doxy previously which didn't seem to help. I use genteal gel frequently. I am trying warm compresses again, which I don't really think help.

We've done some major dermatologist-shopping. Are you on http://rosacea-support.org/community/? Can you find a good derm in the same hospital as the eye clinic? GP should be working with you on finding specialists (been through 5 GPs before I found one we like). Treating the skin oral/topical might alleviate the eyes but you need a derm with experience and skill to work with because rosacea is so sensitive to the individual, preferably someone with experience of serious eye involvement. Ask the eye docs, they should be referring this to a derm.

My skin is not that bad so I'm not sure if it's worth seeing a derm? I have never been diagnosed with facial rosacea, although I do have some of the signs; redness, flushing in the heat, and a tendency to broken veins on the face. I can imagine that the derm wouldn't think my minor cosmetic issues (I don't have acne, just red spots) would justify antibiotics etc (and is there any other oral medications apart from doxy that help rosacea?) I do get IPL treatments on my face which helps the redness and veins etc. It doesn't seem to give me any benefit to my eyes.

Any thoughts what might be rosacea triggers for you? have you got any contact sensitivities around the eyes? diet flare-ups?

Regarding the eyes I don't really think there are any triggers. My eyes don't follow a pattern of flareups rather a slow and steady decline with consistent symptoms and signs. Triggers for my face would definitely be exposure to heat.

[littlemermaid]

My skin is not that bad so I'm not sure if it's worth seeing a derm?

We are same with this 'MGD secondary to rosacea' diagnosis. She had bad MGD before rosacea signs developed, some people don't have obvious rosacea. I say 'unresolved MGD with chronic eye surface inflammation' to ophth, and 'eye inflammation from skin problems' to derms, in your case 'controllable only with frequent steroid' - it's a specialist derm who knows about this, they are working with ophth on inflammatory conditions.

If skin inflammation is trashing your eyes, your eye involvement sounds so barely controlled, I'm thinking a rosacea derm referral is essential, why not? Your local one may/may not be up to it although it would be worth asking the hosp derm dept who is good at this in your region.

Useful derm help/advice/chat has been:
-emotional and professional support (essential)
-identifying and eliminating inflammatory triggers
-controlling temperature regulation, looking at vascular issues
-oral meds for bacterial buildup in clogged MGs, dialogue with ophth
-check with lens for dermatophytes, skin surface issues
-opinion on why MGs might be non-functional or general inflammation
-sensitive topicals like sunblock, wash, moisturiser to improve skin barrier
-reducing contact sensitivities
-reducing allergens
There are other oral/topical meds for rosacea but it depends what your main component is, so varied. (Our acne component is deceptive - yep, she is that age but it is a sebaceous response to rosacea inflammation round mouth, nose, eyes only.)

If you've got what we've got, all the components - eye surface + eyelid inflammation + MGD + reduced tearing + environmental + diet - need addressing in an ongoing adjusting regime. (The treatment combo + plugs is leading to improvement on tear film although we still have some red-eye.)

We are using all available help (ophth, hosp optoms, GP, local optician, emergency eye clinic). Ophths describe what they're seeing - MGs, tearing, eye surface - adjust ongoing treatment. True, sounds like your local hosp ophth have been out of their depth and failed to refer you on, but we keep in with local services too.

Eg you are using Genteal gel which is hypromellose lubricant, maybe ask them about drops with hyaluronic acid as well in case it helps heal the surface? We are doing well maintaining tear film on a spaced combo of both.

Ophth needs to help you assess the state of meibom and work on improvement according to what is found (eg we had improvement on omega 3 oils, low-fat low-sugar diet, daily warm compress, quick gentle rub but don't express unless MGs are blocked or toothpaste, if so we use antibacs and more warm compress to restore function. Yours may be different, cold compress may help.) Can you examine your meibom? What is Dr C suggesting for your MGD? Do you think IPL is harming the eye surround or do they steer clear?

Just in case it helps, I have major white-coat phobia but I try to think of this as 'clinical services' - what is available to us and where - and ask directly for advice about what we need. With respect to all kind docs who are trying to help, it's a bit like having a good hand of cards. Sounds like Dr C has a plan for you and is on the case - is this how you feel?

[littlemermaid]

Doctor shopping

Poppy, Suggestions... just a thought, what do you think?

Sydney Eye Hospital
University of Sydney Medical School, cornea research
Univ of Sydney Medical School, list of clinicians - cornea, inflammation, external disease

- Tertiary referral to Sydney for 'second opinion' from Canberra on chronic use of steroids, barely controlled surface inflammation, uncertain diagnosis

or - You write/email direct for advice to individual/dept/Save Sight Institute Sydney (non-profit) - full treatment history, describe worsening over x years - 'I am hoping for diagnosis and guidance on what treatment options may be available to me'

or - Brave GP or optician refers you to Sydney Hospital for 'second opinion'

This is so difficult for you, sorry to go nagging on, really sorry if it's too intrusive, or if this is even the wrong hospital. Just a few more options. Your history sounds so painfully familiar. We've felt better since we've been on the lists of ophths who are current on what we've got, monitored by their up-to-date team. Access to the latest drops is easier through the specialist eye clinic pharmacy. What do you think? Are these your guys? To access them once for advice on your options may be enough, or you could be a regular if you can face the expense of the travel. Canberra should continue co-care.

I know it's difficult to ask the consultant for referral but if you can do it in a relaxed way (as if) they are more receptive. We were refused tertiary referral at first by GP, opticians, hospital consultants, none of whom had successfully diagnosed or treated the chronic eye surface inflammation with that nasty vascularisation. How very wrong they were - I had to see the surface disease specialist in private practice and we were taken on long-term in the corneal disease clinic at the tertiary hospital that way. The irony is, now I've read up on what's needed and know who's who, the GP refers anywhere.

[poppy]

Thanks LM,

You are right it is very difficult to ask for referrals. Before I go to an appointment I always think of all the things I am going to ask for, then you get there and you are made to feel like a) they are doing you a massive favour just to see you and b) you don't need to be there, you should go away and just live with it (the only doctor who has ever acknowledged my eyes NEED to be treated is doctor C). Then I end up not asking for anything and being fobbed off.

I have an appointment with my regular hospital eye clinic in a few days and this time I am trying to promise myself a) I am going to ask for repeat of restasis and b) if they refuse to give me that, I am going to ask for temporary punctal plugs and if they won't do either of those then I will try to be brave and suggest they refer me on to someone else.

I am really kicking myself that for so many years I never had a regular eye exam because my eyes and vision were perfect... I am now unable to prove that my eye issues are causing my poor vision, as from the docs point of view my eyes could have been that way all along. My vision changes hugely from appointment to appointment, and I fail the pinhole test (which I read means your poor vision is NOT caused by a simple need for glasses) but it doesn't seem to mean much... I still get told rubbish like "blepharitis can't affect the vision"...

[littlemermaid]

Sydney Hospital - eye clinic

Has anyone got any experience of Sydney Hospital eye clinic - corneal & external disease, inflammation?

Poppy, you need Canberra too. They may be relieved to get specialist input from Sydney, or Dr C.

I've had good results by giving the shopping list, written down, to the lower ophth ranks who take the history and read the file before the consultant swans in. Then they raise it with the consultant for you.

Consultants have liked the respectful request for their hallowed opinion on prognosis 'have you seen this before?' (which reminds them they haven't), or the 'who-do-you-know' question (they love that), like 'Is there anyone working on this type of chronic inflammation in Sydney? I'm getting really worried about the vision flunctuating and worsening on steroids for so long' (ie it's getting worse in their care, no hint of criticism).

Wish you had someone on your side - Patient Liaison for Canberra eye clinic, community nurse, optician, decent GP? GP could even do referrals, bypass the ophth. An optician's letter to GP on vision changes + vascularised eye surface would do it 'patient appears to be overlooked, worsening'.

We have vision change around 2 lines during periods of inflammation. You are still having vision change on 4/day Prednisolone. This alone would justify further referral.

Re tetchy consultants, lower ranks just trying to get through the day, and stringing people along without intervention - 'It's nothing/chronic, see you in 3/6m' - it's better to find out what they do/don't know so you can seek better advice.

Very good luck with your list of questions, hope you get nice helpful ophths and, eventually, a cracking team helping you manage this.

[poppy]

Well, to update, I've had quite a good experience with my latest hospital appointment. It really makes a huge difference which doc you see, this time I saw a good one, the last one I saw honestly shouldn't really be practising. I just don't see how an eye doc can be allowed to see patients, especially in a corneal disease clinic, when they have absolutely no idea how to treat dry eye.

Anyway, I got a repeat on the restasis. Also I got some temporary punctal plugs which last for a couple of weeks just to make sure they don't make things worse. I can try the permanent ones if these help.

Also got erythroymcin tablets to take and azithromycin ointment. Plus of course, more steroids. The ointment I have to wait for the hospital to get it on special order so hopefully they come through. Apparently this ointment is not approved in Australia so hard to get. It seems I live in quite a backward country when it comes to dry eye.

The doc said if none of the above stuff works that is pretty much the end of the line for me apart from the way out there stuff like probing and IPL. I guess the other alternative is steroid dependence.

[littlemermaid]

Yay ((hug))