Some questions about UVeitis? Doctors In NYC?
Hello, I'm not sure if this is the proper place to post this but I'm new to this site and kinda lost here.
Can I fly on an airplane with my pressure being high in my eye? Also once again I'm confused about a couple of things and since my Doctor will not talk to me about it I'll ask on here: I was told that I have Atrophy of my left eye . If my muscles are not working in my eye then why am I still on the dialtor drops 2X a day? Is this Normal? You would think that If my pupil was getting stuck open that I wouln't be on more dialtor drops? Yes/No? Ok next question: I'm taking the Durezol every 2 hours which has raised the pressure in my eye. So now im on Azopt 2X a day. to make the pressure not so high. But this is a catch 22 cause im on something to make my pressure rise and then taking something to make it go down. Wouldn't it cancel it out? Also My doctor told me that my eye didn't look Herpetic in nature to her back in the begining.. However my eye was dialted 24/7. On 4/2 she told me that I had Herpies of the eye. I dont understand why she couldn't have picked up on this a month ago so that I could have been on the proper meds. She claimed that "she missed it" due to my eyes being dialted? Is this common? Do doctors miss important things like this? If my eye was infected with the herpies in the eye and Ive gone untreated now for a month what is the danger of this?
I have lost all faith in my present Uveitis Specialist. Ive been seeing her for a month now on an every other day basis.
In the begining she was nice, caring, concerned, reassuring,and explained everything to me. ON 4/2 when i got a boat load of bad news her tune completly changed. She is condasending towards me, rude, short tempered, will not answer any of my quesions, When i do ask she gives me a complete attitude and treats me like im stupied that i dont understand her? I had to call her to ask her about the dialtor drops and she Kept ignoring my question and said "and your next question is"? She acts like she doesnt have time or wants me as a patient anymore. I feel abused from this doctor considering Im putting my eye in her hands. My fear now is that she has made a mistake and is trying to cover for it. In reguard to some blood work that I had she has told me that the it is not important! Any of it! And that she doent need to get the results from it.? Some came back but not all of it.
I'm going for a second opinion hopefully on Monday with someone in my area. I'm going to be relacating to NY and Im in search of a really, really good Uveitis Specialist. Does anyone know of anyone good in the Manhatten area? I have an app with a Dr. Freidman 2 weeks away in the city but he is $650 and takes no Insurance. I dont have fund for this. Any suggestions would be very much appreciated!
Thanks for listening to me. What to do about my present doctor as well?
Thanks,
H.
Hi. Welcome. You have certainly found the right place in the ethers.
Quote:Can I fly on an airplane with my pressure being high in my eye?
Suggest you ask this particular question on the Ask Dr. Foster forum at this link.
Quote:I was told that I have Atrophy of my left eye . If my muscles are not working in my eye then why am I still on the dialtor drops 2X a day? Is this Normal? You would think that If my pupil was getting stuck open that I wouln't be on more dialtor drops? Yes/No?
Don't know enough about your situation to try to respond. What kind of uveitis do you have? What is causing your iris atrophy? The most common cause is viral and has to be treated aggresively with oral antiviral medication to stop the virus from replicating. Viral uveitis is also well known to raise intraocular pressure.
In general, dilating drops are used during acute inflammation to keep the pupil dilated so it does not get stuck to the lens (inside the eye).
Quote:Durezol every 2 hours which has raised the pressure in my eye. So now im on Azopt 2X a day.
Azopt has less propensity to raise IOP.
Quote:My doctor told me that my eye didn't look Herpetic in nature to her back in the begining. However my eye was dialted 24/7. On 4/2 she told me that I had Herpies of the eye. I dont understand why she couldn't have picked up on this a month ago so that I could have been on the proper meds. She claimed that "she missed it" due to my eyes being dialted? Is this common? Do doctors miss important things like this?
Yes, if you were dilated prior to being examined, it can be missed. Are you seeing a retina specialist? Uveitis docs need a view prior to dilation; then, some patient need to be dilated, some don't. In retina practices, staff generally dilate patients automatically, because the doc needs to see the back of the eye (the retina).
If your doctor thinks you have viral uveitis, have you been started on anti-viral medications?
Quote:I'm going to be relacating to NY and Im in search of a really, really good Uveitis Specialist. Does anyone know of anyone good in the Manhatten area?
This is who you want to see. He trained with Dr. Foster and is superb.
C. Michael Samson, MD Background | Publications
Co-Director, Uveitis Service
The New York Eye and Ear Infirmary
310 East 14th Street
New York, NY 10003
Tel: (212) 979-4515
Fax: (212) 979-4512
Liz has given you good info. I had also answered a couple of your questions over on the support & coping section. That is where most people post these kinds of questions & answers. Usually, we just use this board for introductions. Come on over to the support section & you'll get lots of support & probably more responses!
Re the Durezol/Azopt: You have inflammation in your eye. I think of it as being like a sunburn in my eye - it is red and painful, and swollen. But on your skin, the swelling doesn't do too much damage - there is plenty of room for your skin to expand if necessary. But in your eye, there is no room for this, and there are many delicate structures that can be damaged by the inflammation. So it is very important to get the inflammation to go away quickly, to minimize damage to the structures in the eye. That's what Durezol does. It is (I think - not a doctor or a pharmacist) a steroid derivative, and steroids are just excellent at reducing inflammation. Pretty much everyone on this support group has used steroids in their eyes to reduce the inflammation quickly. They are really a miracle drug!
But, steroids also, in some people, increase the pressure inside the eye. The inflammation can do this, too, in some cases. Pressure inside the eye that is too high can damage the optic nerve. Azopt will reduce the pressure, and thereb protect the optic nerve. So, yeah, the azopt may be "countering" the durezol, but the durezol is necessary to reduce the inflammation. It is confusing!
Durezol will not, however, cure the cause of the inflammation. That is what the oral meds, the anti-virals, are for. They will kill the viruses that are causing the inflammation in the first place. Once they are gone, your inflammation should go away, and you can stop the durezol.
Have you had a look at the glossary at the top of this page? It really does help a lot!
As for your doctor, they are also drawn from the ranks of humanity. Some know their stuff, some don't. Some admit their mistakes gracefully, some don't. Some remain graceful under pressure, some don't. Some are nearly saints, some are real jerks. If you don't like the doctor caring for you, find another. Liz has given you some excellent suggestions, and I would add Dr. Chu in Newark, NJ (a 20-minute train ride from Manhattan). Dr. Chu is at a teaching hospital, and in the past it was possible to be seen in the clinic there for much less than the cost of a visit with him as a private patient. It is time-consuming and involved being poked by interns and residents, but if cashi is tight, might be worth investigating. I believe there is also an excellent uveitis specialist in Long Island.
Insurance is often an issue when trying to get care for rare diseases. Sometimes you can get coverage for out-of-network specialists if you can prove that there are no other specialists with the necessary training and experience in-network. If you want help with that, Liz can probably point you in the right direction.
To prepare for your visit with Dr. Friedman, ask your current doc for a copy of ALL the lab work she has done, or ask her to send it to him ahead of your visit. This may save you some money on your visit there, as the $650 may have included some testing that you have had done already.
I know it is really really scary. But most people, including most people on this support group, get through this with no or minimal loss of vision. Most of us lead pretty much normal lives (whatever that is!!), hold down jobs, take care of families, and are about as they put their minds to being, just like everybody else. I hope you can take some comfort in that.
Others here will tell you that I can go on and on - and sometimes do as you can see! I hope if you read this whole post that you found something in it that can help you. And please come on over to the support and coping section where you will find more people in your situation.
Re: Some questions about UVeitis? Doctors In NYC?
I have copied this thread to the Support and Coping section. The discussion can continue there. Click on this link to ready and continue the discussion.
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