Hospital appointment next week and very scared/depressed

[unicorn]

So my referral for a 'second opinion' by a different consultant (still NHS) is due for next week, 20th Sept.

I am really scared about the appointment as the last one was so bad, and I don't think I could bear to have the same experience again.

My optometrist has written a 'background' letter of information for me to show the consultant which I hope will help somewhat - basically it says he thinks my problem is MGD coupled with extreme sensitivity/allergy to various chemicals (including the fact that I am a steroid responder). It also says I am 'mildly OHT' (high eye pressure) which may need further investigation. At my last check up my eye pressures were up again, to 26, despite no longer being on steroids. This is also really worrying me.

I know that to get the best out of the consultation I need to go in with a positive, proactive attitude, and probably also to have a list of the right questions to ask and even suggestions as to possible treatments, tests, etc.

But I'm in such an anxious state I'm not sure I can hold it together enough. I don't have anyone to come with me to the appointment. I don't even know what other treatments they're going to be able to try. Can't use steroids, so what can they do to bring down the inflammation? It's got worse in the last week, coinciding with a flare up in my facial rosacea. It could be due to the fact I've been off doxycycline for nearly a month now, or could be anything... who knows.

My eyes just ache and hurt all day and drops don't help much at all (using Vismed, Thealoz, sometimes saline). My optometrist has pretty much done all he can for me I think.. (also, he advised against punctal plugs) and I don't know what to do next. I tried Blephasteam goggles and they didn't help at all, heat seems to aggravate.

I am so scared this will never get better. Please, if anyone can offer some words of reassurance or advice, I'd be very grateful.

[rm14dp]

Hello, I live in England and I am also being treated on the NHS. Please dont be afraid. I know its easy to say, but at the beginning, I was so frightened and the pain was so bad that I was in a very dark place. Not any more. I have MGD, Blepharitis and Dry Eyes, also I suffer from acute pain in my right eye sometimes which radiates into my cheek and the back of my throat - all this was triggered by surgery. I to am allergic to preservatives and some chemicals like you, and after many painful trials with drops, I am on Systane Unit Dose preservative free drops which lubricate my eyes, ( on prescription but can buy over the counter) and I am using the Blephasteam goggles as well which do help a bit but you have to persivere, and I am on Doxycycline still. Mine were uncomfortable at first as well using Blephasteam, but improved. I found the more anxious I got the less things worked, the less you expected them to work, and the worse the pain got. Its a long journey but things do improve and you cope better with it. The more positive you feel, the easier to deal with the pain, and the less tense you are - I learned that the hard way. When you go to your next appointment, remember the tests will be over in a short while, they arent pleasant, but the consultant is there to help you. If they start using phrases like chronic condition, dont be frightened, there are good days and bad, but the good days do start to outnumber the bad and you are stronger to deal with it. There are plenty of alternative treatments the consultant will try, just stick with it you will find one that helps, then you find another that helps more. try to have a short nap in the afternoons which rest your eyes, and take it a day at a time. You will feel better and more positive.
Before i went to see my consultant, I Googled her as they all specialise in different things - ( the BUPA list of consultants is a good start, many are NHS and Private. ) Just check that they specialise in MGD or Blepharitis or Dry Eye, ( these conditions are linked) then you have the best chance of getting the best from your appointment. Take a list of your symptoms, take a list of all the treatments you have already tried that have helped and not, and let the consultant suggest the treatment to try next. Remember your appointment is just for a second opinion, ( I to had a second opinion, and a third) you will get a more comprehensive diagnosis each time, and a treatment that helps.
Sorry if its a lengthy response, just trying to reasure you it does improve. Hope all goes well for you

[Blinks]

Unicorn, I am so sorry you are going through all of this. I can't offer any help with the questions part, but maybe some thoughts on lowering the anxiety may help. Do you have access to relaxation response tapes?

Jon Kabat-Zinn has several, along with many books. Maybe try his 45 minute Full Body Scan (series I) which is a recording to help quiet the mind and reduce stress through guided relaxation. He's affiliated with UMass Medical Center and is well respected. His 6 week program includes daily use of the 45 min tape. Here is a link: http://www.mindfulnesscds.com/index.html

There are probably lots of similar tapes but this is one I'm familiar with. His book "Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness" provides strategies for chronic illness.

Might check for downloadable MP3 relaxation/guided imagery tapes on Amazon, too.

Another strategy might be to visualize step by step what you want your ideal appointment to be like in detail. Is there someone you can talk through this with? Maybe enlist a sympathetic friend or family member who will role play with reflective listening to talk through your ideal appointment experience. It might help to crystallize your goal and to clarify what you want to take away from the appointment.

Letting the doctor know at the very start of the appointment you are very nervous and list the three most important issues you are experiencing might help? Maybe ask if you will receive a written treatment plan to help you follow through since it's so hard to absorb things under stressful appointment.

While you are sitting in the waiting room, try to take some slow, deep diaphragmatic breaths to help anchor and calm yourself. (Maybe make yourself a little "breathe" reminder card?) Maybe taking along some calming music to listen to during the trip will help to reduce the nerves. Plan to arrive early so you don't add stress due to unexpected traffic delays.

Another possible source for techniques is "Living a Healthy Life with Chronic Conditions" It's a text used by participants in Stanford University Chronic Disease Self-Management programs. It offers a "tool box" of techniques and strategies to help break the cycles (pain, anxiety, depression, stress, fatigue, difficult emotions, tense muscles, etc.) often associated with chronic diseases of all types so while there are chapters on specific illnesses, the techniques are not disease specific.

Hope some of this will help to spark ideas. If it was possible to box up a supply of essence of calm, and courage, I'd send off a package to you via overnight FedEx! Good luck with your appointment.

[robster]

Make a list of things that you want to cover and be assertive when discussing them as I have found especially with the NHS they try and rush you through your appt as quickly as possible due to the fact the waiting lists are so long.

[unicorn]

Thank you all for your kind and helpful responses - they mean a lot.

rm14dp, I'm glad things are getting better for you - did you manage to get a 'third opinion' on the NHS as well? (I hope it doesn't come to that for me!). I specifically requested an 'ocular surface specialist' when I asked for a second opinion and the consultant I'm seeing does seem to fit the bill, but no idea what his bedside manner is like - that's almost as important, isn't it!

Blinks, bless you with your virtual package of essence of calm and courage, what a lovely thought. I have struggled with anxiety for a long time, have had CBT etc, various self-help books - none of which I've got on with very well. Time to make more of an effort I think, as I know what a negative impact stress is having on my eyes as well as my mental state. I have a couple of diazepam pills left over from a bad period of anxiety a couple of years ago. I don't want to have to resort to them again, but I think I might, just before my appointment.

Robster, I will certainly try and list the questions I have but my fear is that I did all this last time, only to be roundly and rudely ignored by the consultant. I struggle with being assertive at the best of times. This is why it would be good to have someone with me, but unfortunately I can't. I'm also struggling as to really know what to ask this time around. I feel like I don't know what else they'll suggest other than just more drops or whatever.

What other treatments might they suggest? No restasis here, obviously, can't use steroids... what non-steroidal anti-inflammatory medications are there that get prescribed NHS?

[lulu]

I am in the UK too and like you have been treated pretty shabbily.
Did you know that you can be prescribed Cyclosporin ointment which althouth licensed for veterinary use is used widely by corneal consultants on the NHS. You would be on a "named patient basis" but that is all. Ask him about this when you see him. I have mine prescribe me this, it used to be quite good for me but because of different probs to yours, its not that effective now.
I had a very rude consultant back in 2007 so after driving home in tears, I wrote a good letter to my GP at the time and started the ball rolling for a NHS second opinion at a different hospital.
The other posts are brimming with really helpful practical advice so not much more I can offer, but to say that when you go in, remember he is payed a substantial sum to HELP you, so dont be afraid of them, easier said than done when it is so important. Be nice, polite and if on the off chance it does not work out, there are still options, although they might take a bit more time to arrange.
Hopefully a fresh look at this will help, it did for me, in fact he did not mess about once he saw what a mess they were in and that basically they had been "left" in this state. There is still not that much he can do at the moment but at least he was not rude and unpleasant like the first guy I saw, whom I hasten to add I initially saw on a private basis.
It will be okay, you will be fine, be kind to yourself and try to relax and not think "what if" because we simply never know who is going to be able to help. Usually I find second opinions very good on the NHS. Let us know how you get on next week.
Lulu x

[mgshutterbug]

I am in the U.S., but even if you are supposedly in a good place for eye care, you can receive poor care. I have found that I had to demand it; the hospital where I had previously gone outpatient for a year, actually caused further damage to my eyes. And he was a corneal specialist! I kept telling him I couldn't see in central vision, which was new (in addition to having a host of other problems which were from DED, erosions, etc.). He ignored me for a yr. I then switched to a new hospital which is world renowned, went to a prestigious Eye Institute. The first corneal specialist I saw laughed me off, told me nothing was wrong, that I was wasting my money to pursue anything more for DED, or this loss of central vision which he said he saw nothing wrong. I went to a different specialist there, and they immediately found what was wrong with the retina (I know, that's not DED, but I mention it because I found out that I had to be assertive, which is something I'm not very good at in dealing with doctors). And I got recommendations from the retinal specialist for a new corneal specialist, and have been treated by them since then. And I have been much happier. My eyes are doing better now than they have been, a run of some 3 months. I'm ecstatic! So I would say, all the suggestions given could be helpful. I get so stressed out I tense up and never ask my questions, or don't remember what they said, or both. I take a card in now most times so I can get the questions answered, and write down some of what they say. Fortunately, the doc who I see now takes her time with me much more than the others did, doesn't rush me through. So don't know if anything I said helped, but know that you are in my prayers too.

Maria

[unicorn]

Thank you so much Lulu and mgshutterbug. I don't know what I would do without this forum, you have all been so helpful.

I am trying to strengthen myself up to be really assertive next week and I will make sure I work on a list of questions that try and get to the point quickly and effectively. Lulu, I will certainly ask about the cyclosporin ointment although if it has preservatives in I will probably be unable to use it I guess.

I am going to try practicing some breathing exercises in the next few days to see if I can remain calm under pressure. The biggest fear is that I'll break down and cry - this tends to happen to me almost every time I'm in an even slightly stressful situation, and of course this really affects what he's looking at - my eyes! So I need to do everything I can to stay calm while making sure I am heard and listened to. My feeling is when that when the obvious signs aren't terrible (I don't have any corneal staining, etc - yet!) they tend to ignore your reported symptoms (ie, my eyes feel unbearably sore every day). I don't want to exaggerate anything to get taken seriously, as this won't help, but they do need to know how much it is really affecting your life.

[lulu]

No preservatives!!!!!! White petroleum, lanolin, corn oil and cyclosporin of course.
Good Luck
Sending you peacefull relaxing waves across cyberspace.
Lulu x