Specialist's response to complaint about pain

[eva b]

I've been reading some of the posts in this thread, and felt a sudden need to get off my chest a response I recently had from an eye surgeon:

I went back to see him one week after a very comprehensive eye exam, during which they used all the usual poisonous drops in my eyes, because I'd had such horrendous effects from them: burning, stinging, extra dryness, the usual pains.

After telling me there was nothing basically wrong with my eyes other than blepharitis and some MGD, I asked him in that case, why are my eyes so ****ing uncomfortable???

He looked me straight in the eye and said, "look, we are eye doctors here...we are concerned about the functions of your eyes in terms of how good your eyesight is...and yours is pretty good, with your glasses...and as far as a bit of discomfort goes....(shrugs shoulders)...well, it doesn't really affect your vision, does it?..."

what can you say???

[NYer]

That makes me want to fly over there, poke my finger in his eye really hard, and while his eye is tearing and he's holding his face, I could say, "So what? You can still see out of your other eye."

[stella]

Unbelievable !!!!

[inthedark]

I've had similar experiences. It's very difficult for people to understand how debilitating eye pain can be. For years, no one (including my immediate family) ever really accepted that I was in intense pain from dry eye. They just thought I complained sometimes, but it wasn't really a life altering problem. For an eye doctor, it's even more: in some people, he simply doesn't see anything wrong when giving an exam. I too don't have any obvious visual problems (like erosions, redness, etc...) but the pain is unbearable. You're not alone.

[brd888]

Wrong doctor

You need someone specialising in "corneal and external eye disease". These docs interesting in the inner eye are of no use to us. Not to say you will easily find a doctor with this interest!

[Rebecca Petris]

You need someone specialising in "corneal and external eye disease".

And therein lies the rub.

"Cornea and external eye disease" as a subspecialty of ophthalmology is virtually synonymous with "LASIK surgeon". That is not to say that a LASIK surgeon can't effectively treat dry eye or show sympathy to dry eye patients but as you say, finding them can be difficult.

When you come across a good one... PLEASE send them my way so I can get them listed in the DEYP.

[Podiatric Medicine Studen]

Painfully Painful.

Yeah, so even after I had shopped around for the best Corneal specialist I could, and he was VERY thorough with all of the dry eye diagnostics, etc.- at the end of it all, I tried explaining to his the EXCRUCIATING PAIN that I have most every day, and I even asked him if there wasn't something I could get for it. Sounds Logical, right? Well, he looked at me like I was a druggie, or abuser (cause that is the first thing that comes to anyone's mind in America when you mention how much pain you are in, right?)- then he told me to just take a few tylenol throughout the day. Ha, Well, I take them, but they really don't even touch the pain. So, how are we suppose to manage pain when no one is believing us? Crazy world! Am I suppose to try to check into a pain clinic or something?



-The Drug Addict drowns in the same pool Mystics swim in.

[Rojzen]

yes, a pain clinic!

I am blind with rage over the trivilialization of our pain, by 'doctors' and family and 'friends.' And Rebecca's point is crucial: the very doctors who should be giving a darn about our pain are pervasively engaged in a business that engenders so much pain, for many, that for them to acknowledge ocular surface pain from any cause would produce an existential crisis they're unable to handle. . .

We should NOT have to validate/prove/legitimate our pain, but the more we describe the pain and ask why it CAN'T or SHOULDN'T be treated, the greater the chance our pain will become acknowledged some time soon.

About 6 years ago, I persuaded an internist to treat my eye pain with amitriptyline, and that bought me 2 excellent years of relief. . .When the pain resurfaced, I petitioned the Johns Hopkins Hospital Pain Center for acceptance as a patient, and when they accepted me, it was the first time an ocular surface patient had been taken on. The doctors there were phenomenal (I wish I could say the same for the attitudes at Wilmer Eye Institute at Hopkins). Once you're inside a pain clinic, there is basic acceptance that the pain is real. . .Anyway, the medication chosen for me was difficult to tolerate, and so I ultimately moved on to Restasis, which reduced the burning pain for me, a bit. . .Years later, however, I would not hesitate to CLASSIFY my problem as including a pain disorder that DESERVES the best that pain management has to offer. . .

P.S. The lesson I learned from amitriptyline is that for some of us, the pain we have is neuropathic (I daresay, for many of us, actually)... Tricyclic drugs and anti-convulsants work specifically in this domain, and if they work, that can confirm that the pain is nerve-generated. Topical eye pain drugs like Voltaren work against inflammation. . .and topical/ophthalmic drugs that deaden nerve pain are lethal to the cornea. . .and so to treat, DIRECTLY, nerve pain on the ocular surface, I believe that systemic medication may be the only viable option.

ALL this said, NOTHING has eliminated my eye pain (burning, stabbing, rawness, menthol) to the extent that Dwelle has. . .but this and other Dr. Holly drops must be tried for a long stretch, I believe, for full benefits to materialize in those who will benefit. .

[eva b]

amitryptiline

Rojzen,

I've frequently heard of the use of this medication to treat pain of neural origin, specially when associated with chronic conditions such as TMJ or post-surgical spinal nerve root pressure.

In fact, the last specialist I saw (privately) at Moorfields did suggest I discuss this with my GP, but I was reluctant to do this as I had a run with amitryptiline in my 20s and did not get on well with it at all (it made me permanently dopey)

My own pain problems are hugely exacerbated by muscle tension in and around all of my neck and upper back muscles...when this is eased, the eye pain in reduced. Of course this means very frequent massage (I'm very lucky there because my partner is a remedial massage therapist - I must have done something really virtuous in a previous life), but sometimes it's not enough.

The nervous tension and permanent anxiety of this debilitating condition we all share brings on anxiety in me, which causes muscle spasm...you get the picture.

What has worked for me has been short courses of diazepam - a very old fashioned tranquiliser which I believe is not prescribed in the US. You can't take it for very long because of the risk of dependency, and you have to taper off slowly, but to get over a very bad spell and break the vicious circle I've found it very effective. And I have a very accommodating GP who admits his ignorance in these matters quite openly, and is prepared to go with my suggestions.

If only I could find an eye doc with the same attitude...

[NYer]

We have it here, too, Eva. It's also known as Valium.

[inthedark]

Who at Johns Hopkins Pain Center?

Rojzen:
You mentioned that you've seen someone at Johns Hopkins Pain Center for help. After going to over 10 eye doctors (including a great one at the Wilmer Eye institute), the final consensus is that I have a neuropathic pain problem.

I would really like to know who you went to at the JHU Pain Center. I would greatly appreciate your help as I plan on going there as soon as possible. I have not been accepted as a patient however. Could you provide any advice regarding how to be accepted? Thanks so much.

[kkahthesea]

Who was the great doctor at the Wilmer Eye Institute?