Ok. Here.

Good, it worked!

So, what it is you wanted to know?

So, I'll briefly outline the situation. Feel free to jump in with questions. Maybe we can take like 10 min, and if you need to go or whatever, that's fine.

I can stay for more than 10 min

So, in around March 2013, I went for a routine checkup (in Bombay) to some place I'd not been to before.

I.e. A bit less than 2 years ago.

@rumtscho Ok.

I'll returned to India in Christmas 2009.

I went to an optician that fall (2009). The doctor didn't say anything about cataracts then.

But the people in 2013 said I had cataracts and advised immediate operation. I didn't like them. They smelled bad. And they were pushy and alarmingly casual.

Now, cataracts are often no big deal.

But I have a bunch of related eye problems. Including extreme myopia. Which puts me in a high riisk group.

And the right eye cataract has progressed much more than the left. So, there's the question of whether to do just the right or do both.

Of the 7 doctors I've been to, one thought I should do the right and leave the left alone for now. But there are technical complicating factors due to the fact (as I understand it) is that if you correct the myopia in one eye, but not the other, then the two eyes may not work together.

So, you are not questioning the diagnosis itself, but are wondering about treatment options?

I also have a degenerative condition of the cells of the back of the eyes.

@rumtscho Correct. Now, the thing is, the doctors in question, some of whom seem a bit crooked to boot, don't really seem to be paying attention. That's the most worrying part.

Sidebar: I found a book yesterday online (via Amazon) but haven't really looked at it. My some American - it looks helpful.

Part of the reason that I asked to talk to you is that you have had a somewhat similar situation.

Yes, medical information is hard to find. Especially reliable medical information.

Anyway, the bottom line is that it's not clear what to do, which is why I have held off till now. But apparently the cataract will harden over time, and become more difficult to remove. There is no specific deadline, but obviously I can't wait around forever.

I would certainly suggest seeking out both the doctors' view and the patients' view

The book is written by a doctor in NJ. What I found amusing was on the first page.

He said that doctors give their cataract patients tons of stuff to read.

But none of the 7 people I talked to gave me anything to read.

I'll certainly look at that book carefully before I proceed further.

The Amazon reviews were good.

So, I guess I have a bunch of related questions.

Books can be a very good starting point. You want to cover the basics, not start gathering information piecemeal.

A book will give you knowledge about how everything fits together. This is missing in other sources, like forums or separate articles from research journals.

1) Suggestions on looking for a doctor? Someone who will actually take some time, explain things, and is not a crook. I've toyed with the idea of seeking treatment abroad, but there is the question of aftercare.

@rumtscho Agreed.

@rumtscho Yes.

The problem with them is that they are "frozen in time", so you need other sources too.

Did you find useful books about your condition? And if so, did you use Amazon, or some other methods? Also, did you find online support groups? And if so, were they useful?

As in looking for a doctor, I don't feel I'm that good at it. Especially since it is probably very different in India.

In my own experience, the doctors in tertiary care institutions were terrible.

They just don't have the time to get to know you.

@rumtscho True. The book I'm referring to was written in 2012, so probably not terribly out of date. I doubt the technology has changed so much.

@rumtscho Ok. I'm open to suggestions about general strategies.

@rumtscho I'm not sure what a "tertiary care institution" is.

There was something Jolene said, and after a while, I started to agree with her

OK?

@FaheemMitha "primary care" is the standard doctor, something like a "family" physician, who treats minor stuff and refers you to specialists

Right.

Sometimes also called a General Physician.

"secondary care" is a specialist like an ophthalmologist, urologist, radiologist or whatever, who has his own office and works alone. He cares for a patient over time, but only for a single condition (unless you have more than one from his field)

Ok.

"tertiary care" is a big hospital with more technology and more specialized knowledge. The secondary care doctor sends you there for the stuff he cannot do alone.

@rumtscho Yes, I see. Is that where you went for your ear condition?

The "secondary" person presumably doesn't always have access to all the technology required.

At least here in Germany, in such a place (tertiary), you don't get "your doctor". You get an appointment (and wait weeks for it) and whoever (overworked young) doctor is on shift right now, he takes you. Next time, you speak to a different one who has never seen you.

Sidebar (before I forget): Do you know anyone on SE or indeed elsewhere who might be helpful to ask about this? They do have a Health SE now.

@rumtscho That sounds majorly sucky.

If you really need an operation, this is probably the best place to get it, because they have the technical experience

No continuity, in other words.

@rumtscho But that wouldn't work if they don't even know you, though.

but everything before and after the operation, such as following up how well you are doing, is best done in secondary care.

@FaheemMitha The surgeon (who is an experienced senior doctor) looks at your test results, goes in, operates, goes out

@rumtscho But by a different person from the person who did the operation, presumably.

@rumtscho Hmm.

they probably do it differently if you are a highly unusual case

but cataract operations are frequent, so I suspect they are doing it routinely and not going deep into every case

Well, it's usually the same person here. All the people I've met with here have the expertise/competence & equipment necessary.

@FaheemMitha Yes. But a person who has the time to give you a thorough examination, and who builds a relationship with you, and starts caring for your wellbeing.

But they wouldn't necessarily do the "right" thing. You know what I mean.

Which brings me back to what Jolene said:

As I said above, my concern is none of these people seem to really be paying attention.

Don't look for the doctor with the best theoretical knowledge. You will be able to get that knowledge for yourself, better than any doctor

Look for the one with whom you can build the best relationship, with most trust.

The most reasonable of these people, he won't even lay out the plan for me in detail, which is troubling.

@rumtscho Well, you do want someone who knows what he/she is doing.

This is about the guy who will be your secondary care (and primary too, but that's irrelevant in cataracts)

One of the most frightening experiences was with some guy who said that you might have problems, and then stopped. This is someone very senior/experienced. He didn't have any solutions. And when I circled back over the points, he yelled at me, saying that "we had already discussed this". I definitely won't be using him.

Though he did not seem like a crook. But he also didn't seem to give a crap.

So yes, I take your point about relationship/trust.

@FaheemMitha Certainly. But if you are a geek enough to read a book plus the newest articles, you will know more than he does. Professionally, he needs to know stuff about dozens of conditions, plus other skills (like the business side of running a doctor's office). He can't keep up with every detail of your condition.

@FaheemMitha Yes, that's horrible. Getting yelled at is certainly a reason to fire your doctor.

Actually, Mr. Reasonable told me explicitly that I couldn't hope to learn about the condition, and that the details should be left to the doctor (meaning him). I assume you disagree. I certainly do.

Although I must admit I was unhappy with my own ear specialist in the beginning, and later recognized that I had judged him unjustly

Mr. Reasonable's real name is Sandeep Kataria, so let me just call him that.

Of the 7 people I've seen, he's the only one I'd even consider letting operate on my eyes. And I have significant reservations about whether he knows what he is doing.

Partly, I had assumed that he's not knowledgeable enough, and later noticed that he must have gauged the situation better than he let me know, but held back a bit, so that I get into the bad diagnosis more gradually.

I think people often assume doctors know what they are doing, but they are only human.

@rumtscho Did you call him out on that? Or did you just infer it?

@FaheemMitha I inferred it. I certainly recognized that he has more knowledge than I had given him credit for at the beginning, because he started discussing it with me. The most unclear/inferred part is his motivation.

@rumtscho So, then you do think that you are in a position to know more than the doctor does. The separate question is - can you find someone who will listen? Assuming you've got your own opinions about what should be done, which differ from his.

For example, were you able to influence/guide your own treatment?

@FaheemMitha Yes, this is a big problem for me too

Or, to put it differently, do you think you are practically better off if you knew nothing about your condition, and had put yourself entirely in your doctor's hands?

Legally, you are certainly allowed to say what procedures you don't want. If, for example, there is some old method which you find out is considered undesirable, you don't have to agree to it.

@rumtscho Well, mostly doctors don't like to listen. And Indian doctors are worse.

@FaheemMitha No, I'm certainly better off having read all this stuff about it instead of having listened to all he said.

@rumtscho Oh, certainly. But if the doctor isn't behind you, it's easy for him to wash his hands of you at a later date. Didn't follow his advice and all that...

@rumtscho Good to know. Can you point to any particular things?

@FaheemMitha For example, the university hospital wanted to operate on me, and the secondary care specialist tried to pressure me into doing it

BTW, I see we are at the 1/2 hr mark. If you want to quit and resume later, that is cool.

@rumtscho Oh. You decided not to go for the operation, then?

It would have been a bad idea, in your opinion?

I did not, and I am happy I didn't, because the more I got information about it, the more clear it became that the operation is of questionable value for people at a different stage of the condition and not useful at all at my stage

What kind of operation?

@rumtscho Wow, so they actively gave your harmful advice? That's pretty bad.

slitting open the "saccus endolymphaticus", a small bubble which soaks up the extra fluid from the inner ear

BTW, circling back. Did you try to contact any support groups?

Yes, I contacted support groups

@rumtscho And that was supposed to do some good?

@rumtscho Was it useful?

It was useful that I have contact with them, although visiting meetings all the time is very boring

I got the feeling from what you said earlier, that you spent significant amounts of time on this. Is that right?

they certainly do have great information

yes, I spent a lot of time on it

There were tons of things the doctors couldn't or wouldn't tell me

@rumtscho Ah. Actually, I think I was talking about something different. You're talking about like AA stuff. Where you actually turn up at meetings and talk?

I was thinking more of an online thing, like a mailing list.

Have you heard of Sorehand?

for example, I had found a lot of descriptions of how a Meniere attack feels to a patient, but I did not find an explanation of what daily life is like when the inner ear is very damaged. Can one still walk straight, etc.

washington.edu/doit/sorehand-discussion-list

I was on that for a while. Back in the last decade.

@rumtscho And you found this out? Where?

This is a thing which the support group explained well. And I saw those people firsthand too, interacted with them, and it was actually calming.

Because they did not appear to be as badly disabled as I had been afraid

@rumtscho I see. I wonder if such a real life group exists in India. Probably not for something like cataracts. And India is a lousy place for such things anyway.

none walked with a cane. Many wore ear amplifiers, but they could talk normally to others.

@rumtscho Yes, I see.

Also, doctors have a very different view from patients on risks and side effects

@rumtscho Yes, reality checks are useful. They can stop you going hysterical with fear and uncertainty.

@rumtscho Do tell. :-)

You mean, as in, they don't care that much...?

one thing, all doctors told me to stop going kayaking immideately, and forever

And you didn't.

because of the risk of drowning if I were to have an attack while on the kayak

the patients told me no way

@rumtscho Is that a real thing?

@rumtscho Oh. Huh. Wonder why the doctors were so wrong? Or was this a cover my behind so I can't get sued thing?

@FaheemMitha Yes. An attack means terrible vertigo. If I try to go to the coast and park there, I wouldn't be able to, because I wouldn't know where the coast is (everything rotates in my visual field).

That's big in the US. Don't know about Europe.

The US is very litigous.

Second, if I fall off the kayak (because the balance is harmed), I would not know where is up and where is down

@rumtscho This has happened to you? Or is it a theoretical possibility?

and would risk to not be able to swim to the surface

@rumtscho Ok

@FaheemMitha for me, it is still a theoretical possibility. But my non-attack symptoms have been getting stronger over time, so I suspect it will happen someday.

So, why did the patients say no way?

@rumtscho Ok.

The current status of your condition is stable, or getting worse, or getting better?

BTW:

You didn't say explicitly what that was.

They said no way, because this would be too much of a sacrifice

@rumtscho Oh. Hmm. But it could still happen.

@FaheemMitha I did, it was the "find a doctor by trust, not by his medical knowledge" part

@FaheemMitha yes, it could. Although, from what they said, they said that it is not guaranteed to be deadly if I do have an attack on the boat.

I thought you meant they thought it couldn't happen. So it could happen?

Yes, it can certainly happen.

@rumtscho Oh, I see. Though, again, I think one should want both.

But they say that from their point of view, the risk is worth it.

But, really, in my case, it's more about really find someone who is going to pay attention to my condition. Apply his mind. You know what I mean.

If the doctor isn't going to do that, it's pretty scary.

@FaheemMitha "want" is good. In practice, no doctor will have as much knowledge about your condition as you yourself, unless he is currently writing a book on it.

@rumtscho I see. So you definitely recommend reading up on stuff?

@FaheemMitha Yes, do read up.

And a second thing where doctors have a "bad" view: side effects.

They would much rather give you a treatment with bad side effects, than no treatment

And what were your sources again? It seems you did go in for the medical journal research.

Unfortunately there are those bad things called paywalls. I hate them.

the operation they suggested for my ear is one example

@rumtscho Meaning the treatment is worse than the cure?

another very important example is corticosteroids for psoriasis

@FaheemMitha yes

I just recently read up a large article, reviewing the current treatment methods for psoriasis

@rumtscho That's one thing I liked about Dr. Kataria. As I said above, he recommended doing only one eye, because the other was doing Ok.

it firmly recommends topical corticosteroids

which no patient wants to use

And the procedure is relatively risky for someone with my condition.

@rumtscho Those things are extremely dangerous.

the problem is, as soon as you stop using the corticosteroids, the psoriasis grows back, on more area than it had covered before

However, he's the only one of the doctors I spoke to who firmly recommended doing only one eye.

if you never stop, the skin "gets accustomed" to it, and it grows back anyway

I don't understand why. Are they really so irresponsible?

@rumtscho Sounds like a worthless treatment. And dangerous.

@FaheemMitha it is not "irresponsible", they just don't look at it the same way as the patient does

Prolonged use of steroids destroys your bone structure.

They are very bad things.

patient goes to them, they give him a tube, spots disappear, patient happy, doctor happy

@rumtscho Well, if doing one eye is a reasonable thing to do, why not recommend it?

when the patient comes back in a year with more psoriasis, they say "sorry, your illness has progressed"

@rumtscho Meaning the steroids?

@FaheemMitha no, you are mixing up systemic and topical steroids

@rumtscho That sounds depressingly likely. Yes, I take your point.

@rumtscho Not oral, then?

they only have side effects on bones, eyes, etc. if you drink or inject them

Locally applied?

for psoriasis, you smear them on the affected patch of skin

@rumtscho I was thinking of oral. E.g. prednizone.

they only have systemic effect if you smear them on more than 20% of your skin

@rumtscho I see. That's a skin disease?

yes, psoriasis is a skin disease. Autoimmune, incurable.

Ugh, Yes.

@rumtscho Yes, that one. Pretty horrible.

I have a very mild case of it.

@rumtscho Oh. Sounds nasty. Whitish skin patches?

The first doctor gave me mid-strength steroids, and it grew afterwards. For years I did nothing and it did not bother me.

Then I had to take steroids for the ear

@rumtscho Ok.

and now, some months later, it grew again

after having been dormant for years

@rumtscho Are you still taking steroids?

@rumtscho Oh, so the steroids bought it back to life?

so, I can personally confirm that steroids do make psoriasis worse, no matter how little doctors want to believe it and how they never mention it among the side effects when doing their overview of treatment options

@rumtscho Did you contact a local medical library?

I found this:

and this is an example of why you should go to patient forums, self help societies, etc.

healthlibrary.com

Not sure what to make of it.

@rumtscho Did you go to online things too?

I mean, online forums.

Whatever treatment is recommended, make sure that you find out how much use the patients derived from it

@rumtscho Yes, I see. They don't mention it in side-effects?

@rumtscho Yes, I see.

@FaheemMitha I am not an active member of any, but I do read the available information when researching a condition or a treatment

Online forums or mailing list. Either, really.

@rumtscho So you didn't post to any mailing lists regarding your condition?

This health library thing looks like there is a commercial interest behind it. No idea what the quality would be.

@FaheemMitha No, never. But I found a lot of information already posted.

I would advise against mailing lists

@rumtscho Right. Might be worth checking out. Do you want a link to that cararact book?

@rumtscho Why?

they are very unusual among today's Internet users, practically only used as a tool by computer nerds

if there are mailing lists on health topics, you are only getting the opinion of the kind of person who uses mailing lists regularly

@rumtscho Well, Ok. But why does that make them undesirable?

@rumtscho And that's an undesirable bias? :-)

which is probably a very good idea if you have a Linux problem

Actually, increasingly Linux users use web forums like Unix SE.

but for researching a health condition, this is extremely limiting in the best case, and actively damaging in the worst, e.g. because nerds are not known for the best wisdom regarding managing the social level of their connection to doctors or such

Web 2.0 and stuff. More interactivity. Opportunities to post "rich content".

@rumtscho I see. Interesting point. So, web forums are better / more mainstream then?

so, I wouldn't try searching for mailing lists for health problems, but go straight to forums

@rumtscho Ok.

I'll see what is available...

I've been mostly sticking my head in the sand, but I can't go on doing that.

Well, we're at the one hr mark.

I'll regroup and think about what you said.

So, back about sources of information

Maybe I'll have more questions about this later.

@rumtscho Yes?

I definitely recommend going through the Cochrane reviews on the topic, if there are any available

I'm searching them out right now, might have access to them to send them to you

@rumtscho I don't know what that is.

Ok, google brought it up.

Yes, that does sound useful. Does one require special access?