New OD and sad news

[jax8it]

I saw another OD unaffilated with my LASIK clinic today. I saw another OD at five weeks, but this new doc gave me some discouraging news. He told me that this dry eye would probably not go away. I am a mess. I keep hoping and praying that it would. To hear this news I am devastated. He seems very knowledgable in the world of dry eye. He just told me that his goal was to get my symptoms to a manageable state. This was his assessment and treatment plan:
1.One a scale of 1 to 10, he said my eyes were about a 3 in dryness. Which he thinks is will eventually get better, but it will be a chronic issue
2. He wants me to increase my dosage of Restasis from 2x/day to 3x/day.
3. Use minimal drops as possible. He thinks that overuse of artificial tears will destabilize my tear film. But he gave me samples of refresh optive with purite perservative to use.
4. He prescribed Alarex to use daily as needed
5. Continue with the Theratears fish oil capsule.
6. Continue with the warm compresses and lid expressions
He wants to see me back in four months. Does this sound normal? Should I find another doctor? I am so confused now. The OD I see at the LASIK clinic say to give it 6 months. I am hanging on by a thread.
Bianca

[LauraK]

Bianca

I do not believe it will be forever. There are so many stories of people healing after 7, 8 or 9 months. I right there with you on the emotional front. Hang in there.

[Joseph]

Get another doctor. This doc sounds anti lasik and probably gave you a bias diagnosis based on the fact that he does not agree with lasik surgery as a good option for vision correction. Things will get better and you might just be over thinking your decision about lasik.

[Rebecca Petris]

I'm sorry to hear you had an upsetting appointment

It's hard to get that 'happy medium' answer that we most need, isn't it? LASIK clinics are all too apt to tell people perennially that the end is just around the corner, while other doctors may be quick to just say, as a generalization, that it doesn't get better. This doc may have simply been trying to counteract what he thought were unrealistic expectations and just wasn't aware of what it would mean to you (remember, if he thinks your dry eye is only a 3 on a scale of 10, that's what he's focusing on - not your symptoms which is what YOU live with). To an extent they may both be wrong and both be right, though. The difficulty is when their words - without enough context - tap into our deepest fears, i.e. I'll never get back to normal, I will never get back to life as I knew it.

It might or might not be true that you don't return to your baseline i.e. exactly as you were before surgery. But personally I don't think that matters as much as returning to a point where eyes don't run your life and your emotions. For everyone the path and the timeline to get there are different but I know you can get "there".

Re: the recommended treatment plan - nothing too surprising in it. How do you feel about those things? Some people are OK with the drug part, others not. Is this doctor open-minded as far as discussing your treatment preferences?

Re: That 3 on a scale of 10 thing. Like I said that's presumably the dryness from a medical perspective. But how would YOU rank your SYMPTOMS? pain or whatever symptoms you have - on a scale of 1 to 10? Were you able to communicate it to the doctor and did he seem to 'get' it?

Re: going back to him or finding someone else: Personally unless the doctor is a dry eye idiot or won't listen or is unwilling to help or is offensive in some way I'm usually all for investing in the relationship. Setting aside the prognosis part which can be such a trigger, did he seem interested, helpful? Was he listening?

Re: healing after LASIK. Remember there are studies showing healing of nerves extending out for YEARS after surgery. The longest I think was 5 years.

[robster]

If he is not affiliated with LASIK dry eye then his knowledge about LASIK dry eye might not be the best. I myself have noticed a significant improvement in my dry eye in the last two months.

I had LASIK in August 2011 and have had a horrendous time with dry eye. As recently as late March I was having a lot of problems. The last 6 weeks or so I have hardly touched my eye drops and have not used my moisture chamber goggles once - even when using the PC or playing on my Xbox.

Yesterday for instance I must have played on my Xbox for about 6-7 hours without once using eye drops or feeling the need to use them. So I would say LASIK dry eye most definitely can get better, when I can't say but I am living proof it can. If I'm honest I don't think my eyes will ever be back to 100% comfort but I think they will easily get to 90% of what they were before LASIK - which is more than good enough.

This answer is also for you as well Laura I thought I could kill two birds with one stone by answering on this thread! I know I'm not out of the woods yet and am still likely to have a feel bad eye days in the future but a few months ago I would never have thought my eyes would feel like they do right now.

So Jax8it and Laura hang in there.

[jax8it]

Robster, that is great news your eyes are feeling better! It is good to hear of more people whose eyes are feeling better.

It really was a shock to the system to hear a doctor bluntly say it was not going away. I did explain to him my dry, burning, painful eye symptoms and he did seem genuinely interested. He recommended I wear my goggles as much as possible to relieve the symptoms. I am still waiting to hear back from a optician to see if he can make me some custom moisture chambers. He even recommended this site. However, if I start a new drop prescribed by him, Alarex, do I need to contact my lasik doc or just tell them at my next appointment? Will the lasik center still see me if I accept treatment from another doctor? Also, the drops he gave me to use sparely have a preservative called purite in them. I was told from day 1 of this whole lasik he** to use only preservative free drops. Will these drops harm my eyes.
Thank you for the responses and words of encouragement. I really need it
Bianca

[Joseph]

Any doctor that would let you walk out of their office depressed and with out any hope is an idiot who should not be on your list of doctors you should trust.. Sorry but doctors like this make me mad, and their lack of understanding of our fear is sickening..... Be strong and know that things will get better.

[PotatoCakes]

I'm going to respectfully disagree with Joseph. Sometimes doctors have to give us news we don't want to hear. Sometimes they are wrong (you very well may get better - some don't, some do). What I like about this doctor is that he seemed very interested in your dry eye, in other words, he wasn't just placating you by telling you it would get better and not to worry about it, and that he is focused on getting your symtoms to a manageable state.

The fact that he's interested in getting you to a manageable state is huge. It means he realizes that you can't live your life if all you focus on is your eyes (I had a doctor like that, NOT helpful unless you never plan to leave the house). A manageable state isn't perfect but if you are stuck with this problem forever, that's what you need to get to in order to be mentally healthy. Don't get me wrong, you'll have bad days but, your life won't be consumed by your disease.

There are a lot of us here that have suffered from dry eye disease for years, decades and likely will forever. I'm one of them. When I first came to grips with the fact that I have this and that there isn't a cure for me (more than a decade after my first symptoms), I became depressed. It was horrible. Some days I thought my life was over and yet, I had a small child to live for and things I needed to do, let alone all of the things I wanted to do. It took time, a new doctor (one that helps me 'manage' my disease vs dwell on it) and a lot of work on my part. I've tried diets (I'm currently trying one now), mantras (highly recommend a positive one every time you have a negative thought -- it really does help), a multitude of medical tests, many not covered by my insurance because they were 'unnecessary', naturopaths, acupuncturists and more. I haven't given up and WITH my doctor, I manage my symptoms and am leading a pretty good life.
Is it perfect? No. I'd love to be able to wear makeup, hang out in an air-conditioned room or car without pain and constant eye drops and I'm still working at getting back on skis if I can find a solution for my dry eye while on the mountain. Still, life is a TON better than it was when I first knew or accepted my diagnosis. My airline carry-on bag is a lot heavier as I tote around my refrigeration-required, preservative-free eye drops and I worry about running out or bacteria, if they get warm. I've become quite adept at demanding refrigerators in hotels when they "forget" my multiple requests prior to arrival. It's not the most convenient thing but I still get to travel! When I put my fancy eye drops in and have to keep my eyes closed for 2 minutes, I use that time to stretch -- it's good for my body and keeps me feeling like I'm being useful with my time. When I have down days or thoughts, I return to my mantra, "My eyes will get better and I will produce tears" or some variation. Some days it helps more than others but I refuse to give up and life IS good. I carry preservative-free drops with me everywhere and no longer do I worry about what other people think when I put drops in where ever and whenever; I need them and that's all that matters. I've got a lot of years ahead of me and I won't let this disease ruin things for me.

I hope this is just an ugly bump in the road of life for you and that in a couple of months, you look back and never have to deal with dry eye disease again. If that's not the case, though, I promise you that you don't have to feel in the dumps forever and this disease does not need to paralyze you from enjoying life.

[Rebecca Petris]

Any doctor that would let you walk out of their office depressed and with out any hope is an idiot who should not be on your list of doctors you should trust.

Joseph,

The point where I would differ from you on this statement is that I think it's assuming the doctor KNOWS where you're at and how what they say might affect you. I've known a lot of doctors, and none of them could see into the head of their patient. I think that even those who wear their emotions on their sleeve so to speak cannot safely assume that their doctor knows where they're at emotionally unless they can articulate their feelings.

On more than one occasion I have had the very painful job of telling a doctor that their patient took his/her life and it was horrifying for them. The doctors in those cases were not uncompassionate or hard hearted (quite the reverse actually), but they just did not know - and if they had known I'm not sure how much they could have helped anyway. -

Sorry but doctors like this make me mad, and their lack of understanding of our fear is sickening.

I'm tempted to differentiate here between lack of understanding (I mean that literally, i.e. not understanding the reasons for our distress) and failure to empathize. Understanding can be remedied with some education from experienced patients like us Those doctors with no capacity or will to empathize are a whole 'nuther ballgame and I feel pretty strongly about them too

PC, I loooove this statement (below). This message really is the raison d'etre of the community here!

I hope this is just an ugly bump in the road of life for you and that in a couple of months, you look back and never have to deal with dry eye disease again. If that's not the case, though, I promise you that you don't have to feel in the dumps forever and this disease does not need to paralyze you from enjoying life.

[Joseph]

You are right Rebecca with the doctors not knowing about are high anxiety and depression. It just seems that maybe if they spent an extra 5 minutes with us instead of moving us through like cattle they would understand that this disease effects alot more then just are eyes. I know that you understand this really well so why don't doctors who have been through years and years of medical school seem to not have a clue. The truely great thing about the DEZ is that a bunch off people from all walks off life can get together and offer support and truely can understand the emotional toll that this takes. This forum has helped me understand my fears and has shown me that there are people who care and try to help alot more then any doctor with their books and degrees.....

[Anthony16]

U have to remember nobody knows what its like to live with a disease/condition until they have experienced it themselves.
I have shared many classes with medical students and they are just average group of people.Some loud and obnoxious,others reserved and understanding.
Most admit they are not doing it solely to help people.
Ambition,social prestige,job security,interest in sciences are just as high on the agenda.

[Jenn1]

Just wanted to add that on my routine opticians visit after my eye exam i got home and the next day they sent a letter offering me laser eye surgery with £300 off, when they know i have TED and bleph and mgd!! I swear they need to be seen by a psychiatrist!

[Rebecca Petris]

Just wanted to add that on my routine opticians visit after my eye exam i got home and the next day they sent a letter offering me laser eye surgery with £300 off, when they know i have TED and bleph and mgd!! I swear they need to be seen by a psychiatrist!

I remember getting something like that when I went in for a retinal check a few years back. I called and asked to be removed from the mailing list.

As for email, Lasik is also almost as prolific in junkmail as discount viagra.

[Eileen510]

You are so right - this forum is all about people that care, that want to find answers to making our Dry Eyes more comfortable and I tell you I have learned more from this site on how to improve "my daily routine" than what the Dr's have told me (or should I say what they haven't told me). As I have said in earlier posts - for over 30 years they have told me to "blink" more. At least at this site there are helpful things that we can try to improve our eye health.

[LauraK]

Robster:

I am so glad to hear of your progress!!!