What should I do now?

[Stacy70]

I've been seeing a retina group here in SC since March. My right eye was becoming blurry, and my mono-vision contacts didn't work well for me any more.  They examined me and did many tests, including dye, and found 'something' that looked like a virus in that eye. They found inflammation, and talked about surgery to remove
fluid and debris from that eye and examine it to find out what's wrong.  I opted for copious bloodwork and they found many cmv anti-bodies in my blood. Nothing else turned up.  

I was sent to an infectious man who started me on valcyte, 1 per day for 2 weeks.  Another round followed, the assumption being that if there were antibodies, there was active infection.  The eye was no better and no worse, and they were not sure what was the problem.  They weren't convinced it was cmv, but didn't know what it was. Originally they'd considered toxiplasmosis, then maybe oral herpes, and came back to cmv.  

An appointment was made for me to be seen at Duke eye clinic.  I waited the 2-1/2 months, and thru mis-scheduling between the two local docs, I was without any further valcyte.  When the day for appt at Duke was at hand, it was cancelled because Medicaid wouldn't pay for it.  

I got in to see local doc on June 6, and eye was a little worse, more fluid. I called the infectious disease man and got more Valcyte, this time (based upon local doc's reports) one 450mg pill 4X day for 2 weeks.  Now I find out that local doc has scheduled an appt for me at MUSC in Charleston for further evaluation, and doesn't want to see me until after that.  I learned the appointment isn't until Aug 12, another 2 months away!  

I  have now lost confidence in this doc and practice, and don't understand why he won't at least see me to see if the new dose of valcyte might be helping.  He has not returned my call, and I don't know what to do. I don't feel he's ever seen this before, and there's also a cataract growing in that eye, making it hard to see to the back.  

This is not a big city and I don't know if there's any other retina man around who is any good.  Where can I go to find out what is really wrong with this eye before it gets any worse?  What and how would you suggest I proceed?
I feel like I've got a ticking time-bomb in my eye.

Thank you.

[JodieJ]

Sounds like you found the right doctor, Stacy.  Try to keep us posted!

[Stacy70]

I am sorry folks, this is the third attempt to send a post to the list.  I type them, send them
and they go into the ethers.

I went to Columbia yesterday to see a retina man who's also a professor at the teaching hospital there.  He was wonderful!  He saw more things in that eye than I've ever heard of,
some of which I wish he hadn't see   But he's sending me to a rheumatologist and an
immunologist, and I believe he'll get to the bottom of the problem, altho I may not like
the treatment.  

I'll keep you posted going forward, if my computer will send my posts to you and not into
space.


Thanks,
Stacy

[JodieJ]

You have really been through a lot!   Yes, you can get HPV in your eye--I have no idea whether that is your problem.  Apparently, Dr. O thought you have uveitis based on your symptoms.  You have nothing to lose by seeing an ophthalmologist in Columbia--maybe they can help you.  But keep in mind--it would only take one phone call from your local doctor to get your appointment with the Charleston specialist moved up.  (Then the doctor could stop avoiding you because he is embarrassed by his inability to help you.)

[Stacy70]

Thanks for your support.

I have found listed on the net another doc who is a uveist (did I spell that right?) about
an hour's drive south of here in Columbia.  He got his fellowship at Duke.  I'm going to
try to schedule something with him.  I don't think this local doc knows what to do.
He does seem to be more compassionate than his partner, whom I saw first and was
really too aggressive for me.  But this guy is so swamped that his office manages a lot.
Plus, I get the feeling he feels a little guilty and so is avoiding me.  But I'll hold onto the
appointment in Charleston for now, and try to get into this other group in Columbia.

I'm wondering.......do you know if you can get HPV in your eye?  I have had that and it
was at the last stage before cancer, and then spontaneously regressed and went away.
However one year ago today I dropped with sepsis and they didn't expect me to live.
Hospitalized for one month and in nursing home for 2, this eye was all bloodshot and
filled with many floaters when I awakened.  It began to blur late January of this year.

I was trying to think of what else might have been 'hiding' in my body beside cmv that might have reawakened and landed   in my eye, and wondered about hpv.  Does anyone
know if that can go to one's eye?

Thanks.

[JodieJ]

Please don't be timid about confronting your local doctor.  It's been my experience that an ophthalmologist can get an appointment scheduled with another ophthalmologist within a few days--even when that doctor is officially booked up for months.  Your local doctor shows no empathy or compassion (in my opinion.)  If he treats his staff the same way he treats his patients (which is likely), his staff will probably all be (secretly) rooting for you if you showed up and (loudly) demanded that he make a phone call to get you a sooner appointment in Charleston (which he should have done in the first place.)  

[Stacy70]

Thanks.
Medicaid said it won't pay for anything outside of South Carolina (I curse the day I ever
came here)  I asked if I paid it, would they then reimburse me, as they do with transportation.  She said no.

I am a bit timid about confronting the doctor, including his whole staff.  But the eye is worse enough today that I might do it.  I might also call Charleston and see if I could
get them to work me in sooner.

I'd written to ask Dr. Foster in Cambridge for a referral.  He said he could see me right
away to take a 'tap', which is what the local man is talking about too, but for some reason
wants to wait until after these other doctors see me.  I don't understand because if the
tap can be examined to find out what the virus is, why do I even need to see the other
man?

I'm just so financially strapped that everything sounds too expensive :(
And I am still fairly new to SC so the way things are done here, and finding whom to go
to here, is confusing to me.  I lived in Florida for over 30 years.  Whether you went North or South, it was still Florida and insurance wasn't a problem.

Thanks for your response.

[JodieJ]

I think that Dr. O is suggesting that you see a retinal surgeon who specializes in treating uveitis.  I recommend that you try walking into the office of local retinal doctor who set up the appointment for you in Charleston (since your calls aren't returned.)  Say whatever it takes to get him to call the Charleston doctor to get you a sooner appointment.  (Believe me--an emergency referral from a retinal doctor does NOT have to wait 2 months to be seen.  You should be able to get an appointment in Charleston within a week!  If you tend to be shy with professionals,  then it might be helpful to rehearse with an outgoing friend before you see the local doctor.  Bring the friend with you for support.)  Do NOT accept that you must spend 2 months waiting in fear.

By the way, why wouldn't Medicaid pay for your appointment at Duke?  This decision could probably be appealed, even if you needed to go to the supervisor's supervisor.

Good luck and keep us informed!

[Stacy70]

How do I go about that?  A uveitis is also an eye doctor? I don't know where to begin
to look.  Are there state-wide directories for such things?

Eye seems worse last couple of days.  Could valctye be adversely
affecting it?

I am really getting frightened, and waiting another 2 months gives me more fear.

Thank you.

[Ray T Oyakawa, MD]

Try to find a specialist in uveitis.

Dr. O.