Seeing Dr. Tseng on Wed. need some advice....

[chimera]

so i have a list of what i want to ask Dr. Tseng on Wed. but Im wondering if its too much for one visit. Do you think there are things I should focus on first & then maybe other things that i should leave off & ask on a future visit?

Has my MGD improved? If yes, why am i still feeling pain? Is there a specialist or any other dr I can see for the pain?

if not improved :

could you check for
conjuctivochalasis
ocular rosacea
bacterial infection causing pain/soap feeling?


would any of these other treatments be helpful:

manual gland expression by you
doxy, azasite or other drops/meds for rosacea?
prokera
prose


I beleive I have filamentary kerititis, what treatments are there to help alleviate this?

also what are the ingredients in the lipid ointment you gave me and is there a similar ointment I can get OTC?

[Faith1989]

In my humble opinion, this is an excellent list.. Have you not tried doxy yet? Doxy helped me out quite a bit with the lid inflammation, unfortunately had no effect on my sore eyes. I would try to get an exact diagnoses from him and then ask what the BEST possible treatments are. I would also like to know of a good OTC lipid ointment if there is any.. My corneal specialist said the best OTC treatments are the ones with hyloronic acid in them, he said they have "healing properties" I always get somewhat nervous at my appointments so bring the list and be firm. I always tell the doctor if he says my eyes look "okay" that I KNOW something is wrong, this isn't normal.

Good luck! P.S. what treatments are you currently using if any? Are your eyes noticeable red/inflamed?

[MartyM1985]

Tell him to cure us all.

[soaps]

Really depends on his manner . if he says any questions then u go for gold.
I think phrasing things as questions rather than statements work best. then u r working as a team problem solving . also allows for a nice flow. spread questions out if possible.

Make sure u leave with a plan!! What r going to use how often and correct technique. what r side effects what should u look out for. what does he hope to see nxt time and if it doesn't work wat then. this plan keeps me going and makes sense wen Im ready to throw the towel in.

Also take someone if u can. i used to forget such obvious questions as i was upset about poor progress. but i had written questions down and family member would jump in and ask tick off and write answer.

All the best. I remember Rebecca once said if u walk in positive then drs r more ready to work with u. So b as pleasant as u can b and smile (even if aircon is killing ur eyes and dye burns) just smile politely and say i am in 9/10 pain but how are u?

[BigNate]

I think the most important question is "what's next?"

If you can try to develop a long-term, phased plan, I think that is crucial. Yeah, he can diagnose you with all of the conditions you mentioned, but if you don't know how you are going to get rid of it, or alleviate the symptoms, then there's no point in finding out what conditions you suffer from. Always question what his backup plan what will, and what the backup plan to the backup plan will be. In my personal experiences, I've wasted so much time, money, and effort in "trying" things and for 2 weeks/3 weeks, or however long even though I should have been trying them much longer, followed by a slight modification to that.

Basically, to sum up everything I have just said, (in my opinion) I would recommend you find a way he can help you make sure you have a plan that considers ALL possibilities and ways to test which treatment and plan is right for you.

[chimera]

thanks for your replies everyone. This is actually a follow up visit. I have already seen Tseng twice before. He diagnosed me with MGD & he only told me to do warm compresses, use AT drops, the lipid ointment he gave me & to make sure I always blink. He was then going to "discharge" me but I asked if I could see him again ina couple months & he said it was ok.

Faith,
I dont know if they are inflammed. I know they are always itching & they feel dry & the skin on my lids & right under my eyes look very wrinkly. The colder or windier it is the worse they feel. I dont have redness on my face, or lids, but I do have some redness on the outer areas of the whites of my eyes(the areas farther away from the iris.)

I think Im going to print the list but Im only going to ask him about the rosacea/ doxy & the filamentary keratitis(b/c the fk has been really bad lately.) And I'll ask about the other stuff next time I visit. I dont want to overdo it on one visit.

[chimera]

sigh this is so disappointing. well i went to my check up today and I dont know...


I told the Dr about my suspisions about Filamentary Keratitis & he told me no, he doesnt see any signs of it & that its dangerous for me to start making assumptions on what i read online. He then went on about how he thinks my problem might be that I sleep poorly(?) Yeah i dont know where that came from cuz he didnt tell me anything about sleep in my first 2 vsits. He said I have "floppy eyelids" & that he thinks I might have have sleep apnea, & I should go to a sleep clinic.(??) he asked if i sleep on my side(which I do,) that I shouldnt or I should wear nightime googles.

At one point I asked him I think about some medication & he told me that he can prescribe me different meds & treatments but that they wont solve my underlying problem, that I have to "change
my lifestyle" including not using the cmputer or watch tv at night, & the sleeping issue again. He said the way I sleep oxygen isnt getting into my eyes? I told him I sleep with a sleep mask he said I need goggles. Finally he did also offer that maybe I could try prokera, but I told him Id think about it first. B/c I have considerd prokera but I had wanted to try other easoer things first.

I couldnt ask him about Ouclar Rosacea, b/c i didnt think it was a good idea judging by his reaction to my suggestion of the FK..

Im sorry if it sounds like rambling ...Im anxious & frustrated.
I will try some of his sleep suggestions but I wish i could try some of the things I had on my list. but I guess I will need to see another Dr for that, thats if I can find another dr. Ive gone to 7-8. Ive lost track.

thanks for reading & your support. BTW my mom hates that I visit this site, she says it makes me paranoid, full of people who dont know crap & doesnt help me at all & that I should just listen to what the Dr.s say. I disagree I sometimes feel this is the only place that understands the hell Im going through.

[Guest]

I told the Dr about my suspisions about Filamentary Keratitis & he told me no, he doesnt see any signs of it & that its dangerous for me to start making assumptions on what i read online.

So sorry to hear about the disappointing visit!

As a general rule, I think it's always best, especially with a new dr. who doesn't know you, to NOT mention one word about reading things on the internet. There is such a stigma about it in the sense that they are likely to ASSUME you've been reading crazy stuff and to ASSUME you are not looking at reputable sources of info, etc. In the end, it can make one appear to be a naive patient desperately searching in all the wrong places for answers and make them even less likely to consider your ideas in future.

And let's face it, I'm sure most doctors HAVE come across many naive patients searching in all the wrong internet places for answers... can't totally blame them for leaning towards skepticism... especially with a new patient that they don't know very well.

If you've seen a doctor multiple times over several months, given them a chance to do their thing, and if you're still not doing well, THEN I'd bring up stuff I read on the internet... although never, ever, say I found out about it in a forum since who the heck knows who those people are posting on that forum, right? Heck, if I were a doctor, my first instinct would be to reject outright any ideas someone got from an internet forum too... can't blame them, really.

If I get an idea based on a forum post, I'd research further in treatment guidelines and reputable journal articles... if that research made a convincing case for my forum idea, then I'd go to the doctor with THAT research based on iron-clad reputable sources, combined with my own personal case history and why I think said treatment idea or disease cause applies to me... NOT the fact that I'd first read about it in a forum. (Not saying you did this... but just in case anyone else is considering it)

Anyhow, hopefully this forum is NOT making you overly paranoid. If it is, then for sure take a break from it for a while. Sometimes it's good to put this away for a while, ignore your eyes as much as possible, and just live life as is for a while. But if your mom is totally wrong about the forum-causing-paranoia-thing for you, which is obviously entirely possible hehe, then post away

I sometimes feel this is the only place that understands the hell Im going through.

Ditto!

[jax8it]

^ What SAAG said!�� She always gives the best advice. Sorry you had a bad appointment.

My family thought this site was making me paranoid too. After I had lasik,no one in my family understood what I was going through. Heck, my sister had LASIK 4 years before me and was fine. However, I do think reading a lot of the posts did exacerbate my anxiety. Anyway, I have learned so much from this site and it is the only place that people fully understand what you are going through.

[chimera]

If I get an idea based on a forum post, I'd research further in treatment guidelines and reputable journal articles... if that research made a convincing case for my forum idea, then I'd go to the doctor with THAT research based on iron-clad reputable sources, combined with my own personal case history and why I think said treatment idea or disease cause applies to me... NOT the fact that I'd first read about it in a forum. (Not saying you did this... but just in case anyone else is considering it)

I told him i read it on the internet while doing research but I wasnt clear about exactly where I found this info. I found it online googling "white particles on cornea". I found descriptions of it on health question & answer boards & then that led me to medical articles about FK. But I didnt tell him any of that b/c once I mentioned the "I" word I could see from his reaction it was best that I kept my mouth shut(uh especially since at one point I kinda interrupted him & he told me I needed to listen to him.) -_-

This is why these Drs visits make me so anxious now.

[Rebecca Petris]

Re: the forum and paranoia: The forum really can be harmful to people depending on their state of mind (this is especially true for people with LASIK or other iatrogenic dry eye).

Chimera, if I could talk to your mom I'd love to . Some people exercise very poor judgment about the information they find in forums or don't know how to do any further research, and that carries its own set of problems. But... empathy is a fundamental emotional need people have when going through certain kinds of health problems (bearing in mind that dry eye combines the two high stress factors of eyes and pain) and that's why people flock to online forums, above and beyond the search for information and ideas to research. Is there anyone here who hasn't had that sudden feeling - almost like a muscle-relaxant effect - of relief when you read what someone else has written and say to yourself, "Yes! S/he GETS it! That's exactly what i've been experiencing!"

[browneyesblu]

Is there anyone here who hasn't had that sudden feeling - almost like a muscle-relaxant effect - of relief when you read what someone else has written and say to yourself, "Yes! S/he GETS it! That's exactly what i've been experiencing!"

Not to mention reading that someone with the same problems you have posts a success! That's a feeling of euphoria.

To Chimera, doctors hate it when you come to them with a diagnosis, whether you mention the Internet or not. They feel it supercedes their authority. They are trained to take histories, look at signs, order tests and then be the one that makes the diagnosis. They are taught to view themselves as the expert, it's drummed into them.
If you schedule another visit my suggestion is bring him a very detailed history, let him do his thing and make the diagnosis, and if you don't agree then ask him questions. Bring his attention to the symptoms that led you to your conclusion then ask him what the cause is. Sorry I didn't read this thread and post sooner.

[Guest]

Bring his attention to the symptoms that led you to your conclusion then ask him what the cause is.

I find this approach helpful also... it can help steer the conversation to symptoms/problems that the doctor may not have realized are as much of an issue as they are for me. And of course a healthy dose of tact, politeness and open-mindedness help a ton when bringing these issues up (no worries, not saying you're guilty of NOT doing that!!!)... Also trying to see yourself from their point of view can be useful in trying to figure out how to approach them with a question.

Obviously the above only works if one has a caring dr. who is honestly doing their best for you... if they are not such a doctor, then I think the best move is to simply move on to a better doctor.

Try not to be anxious though... maybe it will help you, IF you get a good feeling about a new dr, to stick with them for several visits over 3-4 months... after seeing them several times and just going with the flow letting them do their thing, not only will they know YOU better, but you'll know them better and probably be more comfortable asking them questions. It takes time... Another thing that can be super helpful is to go the appointment with a brief list of any questions that you want their opinion on... the list will prevent you from forgetting to ask things (one of my favourite ways to get all my questions answered efficiently).

I told him i read it on the internet while doing research but I wasnt clear about exactly where I found this info. I found it online googling "white particles on cornea". I found descriptions of it on health question & answer boards & then that led me to medical articles about FK. But I didnt tell him any of that b/c once I mentioned the "I" word I could see from his reaction it was best that I kept my mouth shut(uh especially since at one point I kinda interrupted him & he told me I needed to listen to him.) -_-

This is why these Drs visits make me so anxious now.

Naw... don't be anxious because of it, just learn from it and approach it differently next time. For example, never mention the "I" word. Maybe something like this:

"I brought along a copy of this article from the July 2012 issue of "Cornea" and I was wondering if you think that this treatment that they mention here might help me..." Or add on WHY you think the treatment is worth trying in your case... If they haven't seen the article previously, just ask if they'd mind taking a look at it and you'll see what they think at your next visit? This takes the pressure off them to read it and decide right that minute... it takes time to read an article and consider it, so giving them that time can help.

Sure, you FOUND the article on the internet... but what's important to the dr. is who published it and are they reputable... is the source something that deserves his time and trust? No need to mention the internet since all that matters is the name of the journal and when it was published. Ok, so I'm oversimplifying things, but you get the idea...

And again, I'd pretty much never bring up these ideas on a first visit since I look at that first visit as a getting to know me visit...

If you liked this dr (don't know if you did), then why not try whatever he suggests for a month, if no improvement (or insufficient improvement), make a followup appt. If still no good, then make yet another appointment... maybe after appointment 3 or 4 bring up an idea or two of your own hehe But for all visits before that, just go with the flow... no pressure... just relax and see what he thinks...

[NotADryEye]

Chimera, what you describe is disappointing but not surprising. The way I found your doctor was on the "internet" but it was the PubMed site and via an article he published on demodex mites. The advice you're getting regarding finding reputable sources is good and Rebecca is spot on about the forum.

www.pubmed.gov

You can get articles from around the world on virtually any condition published in peer reviewed journals.

If you'd like to talk, feel free to send me a private message. I'll give you my phone number. I live in Orlando.

Also, don't forget that you can always ask Dr. ****** a question on his website.

www.dr******.com

Go to the Contact Dr. ****** link on the lower left of the home page.

[chimera]

hey everyone, thank you for your words & encouragement. Yes I agree it feels so great when you find people who know exactly what your are going thru, especially when you dont know anyone personally in RL that has your condition.

Rebecca, my mom understands & likes that I find support here but she thinks I need to be careful b/c I tend to be a bit o/c about stuff & it causes me anxiety. She's also ridiculously overprotective.

I dont know if I had mentioned b4 that this wasnt my first visit with Dr. Tseng. I had seen him twice already, which is why i felt sorta comfortble asking him about the FK. I think for now Im just gonna follow his advice on the sleeping, & i plan to make a thread about this topic soon b/c Id like to know some of your opinions on sleep & dry eye. That & right now I have no idea who else to go to. I dont think it do me good to go back to Bascom Palmer as Ive already seen about 3 different drs there...its so frustrating to have all these other ideas(on my list) that might help me but no dr to talk to them anbout in person. I dont feel comfortable asking Tseng about them at least not right now.

Id like to go to Dr. ****** but right now thats not possible due to the distance. Id like to ask him a question but I dont know what I could ask him other than the usual stuff about costs & procedures. Maybe I'll ask him about wether I might have corneal neuralgia or about ocular rosacea...I'll have to think about it.