osso's eyes 3 - continuation of saga

Yay, I am going to start a driving 101 thread this evening. I was trying for metaphors as I was driving ... as the experience is one of swimming between mountains or doing an airplane glide, but... I kept coming back to there being no metaphors. The driving is the experience and the metaphors are secondary to that, which is so viceral, so....

and so on.

it seems like good news.

I loved the description of the drive.


I always start journeys with a feeling of happy expectation - like you, it's look at that sky, look at the shadows of that cloud throwing up the contours of the hills, look at the misty distance ........constantly!

I'll follow the thread avidly

Thanks, Osso. Your account was so generous. So much wonderful shared detail. You have the writer's skill for the concrete (outside) and the subjective (inside) of experience. I really felt I was somehow there with you.
I don't know how you interpret the test results. Sounds promising but indefinite. When will you know more? One thing was strange for me. When I am talking to a physician about serious test results, my emotions turn off. I tend to repress feelings in order to function more comfortably. But while reading your account of the testing, I was feeling butterflies. You are a precious person--I know everyone here sees that--so your welfare is important to me (us).

Thanks, kiddo. I don't know the results of the test yet, will hear "this week". It is an amazingly busy office, as all the physicians there (4) are very specialized specialists, and they handle a fair amount of emergency problems with peoples' retinas, day or night. In my case this time, as opposed to back in January when they operated on Sunday a.m., there is no emergency and I am glad to wait until the doc calls. I might email him to corroborate my sense of what he said to me, at some point, but not yet.

My immediate take is that there was a crisis, not a light one, but it was a week before, before I went to the opthamologist and she multiplied my meds. The fear factor was that I thought I had lost being able to read typed letters in full in my left eye forever, and that turned out not to be true... but the fear was there first.

It is over for the present, although this level of meds can't keep up forever, and it would be nice to figure what was going on. The test will help him understand if two processes were going on separately or they were conjoined; if not conclusively, it'll help.

I have mixed feelings about starting this thread, as in just how self-involved am I, but it might be helpful to someone later on. At some point I'll rename the topic so it'll pull in people with Retinitis pigmentosa and others with eye pathology, such as diabetic retinopathy, that makes cataract surgery risk filled.

As an addendum, I have decided never to stay at the convenient Dreadful Hotel again. For the money, I can stay at a more charming place and take a taxi back and forth to the mds' if I have dilated eyes. Who needs to add weird, when things are weird enough in the first place? (Hmm, there's a fairly nice Days Inn in Rohnert Park, the town south of Santa Rosa. Forty dollars or so a night difference... and I think they even might take dogs.

fly-specking to keep in touch

partly because of ossoB's eventful events and recent events in one of the lad's eyes, I've subscribed to an online RP newsletter. very helpful. i'm sending away for some of the free, at-home, quick tests. Thanks for starting this whole group of threads, ossoB. Though truthfully, I'd rather there was no need for them.


but, thank you.

Hmmm, ehBeth. It is my nonprofessional point of view that there are more people out there with low level RP that don't know it.

When I finally, at age 48 or so, went to the Jules Stein Eye Institute at UCLA when I needed new glasses because I had figured out over the years that I had it (I fit the RP ads, and had tripped on tree roots going toward the Greek Theater from the parking lot, splaat, and I missed a chair and sat on the floor at a Tijuana bar BEFORE having a drink, in my early twenties, and once in a while hit my head on the top of the car as I got in the passenger seat...) and I went to the eye clinic, which was manned by residents in medicine. I am generally a fan of residents in medicine - while they are uniformly tired, a lot of them are on top of all sorts of possibilities and alive to what you might have, at the same time they are not fully seasoned, re medical. education. But this guy was telling me that a lot of people have trouble seeing at night. I really had to press to get him to look hard. I think he only kept on since he started to think I had glaucoma, hah. I had perhaps a 17 eye pressure.

I may have pressure problems in Lefty now, but this is about fifteen years later, and even now I am borderline in it in my "normal" right eye. But in his push to see if I had glaucoma, looking, looking, he saw the telltale spots for RP and agreed with me. Every once in a while I run into someone who tells me they can't see at night either and I think they may have a beginning version. Some lack of night vision is normal as people get older.

People with rp have low peripheral vision. I must have always had low peripheral vision, but the subject never came up in routine conversation. It was my husband who noticed that I didn't see that car on the on ramp... quite crabbily, I might add.

Once I caught on that my peripheral vision is iffy, I changed behavior and look often this way and that, and so far, over many years, it is other people who have accidents in parking lots. It's part of why I drive a volvo station wagon, full view as I look around.

JL has had a friend who did become fully blind through RP, thus has quite a sense of it.

I know everybody wonders how I can drive, or dare to. I am sort of moralistic in my atheistic way, and I won't drive if I can't see. I have had poor peripheral vision forever and haven't had a ticket since, I think it was, 1974. (Please please don't let my posting this cause a ticket.) I must compensate by looking around fairly often.

Well, CA's standard of 20/40 is reasonably tough and I passed it recently, even with the left eye, which is in the most vulnerable state. In the meantime the right one is working. It has been something of a surprise to me to hear how many people are driving with one or the other eye in a bit of a blur. The dominant one really dominates.

Um, diabetic retinopathy is a subject I know is near to my personal interest, but I haven't explored the situation myself.
I think some problems people with rp have cross with that.

Also, macular degeneration - which I thought I suddenly had but didn't, this last week - has similar, yet different, things to deal with.

My head's kind of spinning!

And my neighbor is in the later stages of RP, and a 97 year old friend has macular degeneration in the left eye. And what about the fairly benigh condition called "low vision"? Isn't that fairly common among the elderly, and doesn't it also affect vision at night?

Yes, LittleK. Life is scary--depending, of course, on one's point of view.

not so much scary as over-whelming.

Thanks, yes, for the detailed and generous account. Whether it directly benefits someone or not -- and I imagine it would (good wishes to the lad, ehBeth, sorry he seems to be having a hard time of it) -- it is still interesting and enriching reading even for the casual bystander. (Which I guess I'm not, really, definitely invested in having this turn out well for you/ to be there in whatever way I can if things don't go as swimmingly as hoped.)

Checking in again. I'm anxious to hear what the report says, osso. Let us know when you hear, okay?

hear, now there's another subject, heh.

Yes, it is true, I face failings in both seeing and hearing. This is a true nightmare for anyone awake while it is happening to them, er, me. I hope the full brunt of it all doesn't gather, for me, very soon. What can I say on this, it is nothing that I am about to type out a post of hope about.

What I could say, is, where is the drug at the moment I decide I want to cut out, not being able to hear or see...?

But that is another subject, presumeably quite a while from this minute. I am not at all interested in self obliteration now, good grief, I am a busy woman. But I can imagine being there sometime, with no recourse, let's say, for conjecture, seven years from now, or eleven, or later.

I suppose at that point I will have to gather my cookies and move to Oregon.

In the meantime I am living engaged in life. I just happen to have a rather round view of things.

No news yet, Osso?

Thanks for asking... but now. I called today and the receptionist sort of laughed, and said it might be a week or ten days. So, me, I figure they call the deepshit ones right away.

I presume they have already sent test summaries to my opthamologist. (er, or don't I?) I don't care unless it is urgent. I know they are up day or night with surgeries among the few of them and am not into nagging.

Let me just assume that I had some damn thing and it is over for now.

j/osso

JOso, I guess you're right. If it were urgent you'd know by now. But it never occured to me that you had an "urgent" problem, even if it were not "unserious."
What I can't understand is why there would be such a large retinal set up of specialists (and surgical facilities) in such a small out-of-the-way place. Why arn't they in San Francisco, L.A. or Sacramento?

Well, when the blank spaces occured in letters...
say, if you're looking at the typed words on a post, and can read them, but they are sort of lacy...
I really thought I had lost that vision, as I knew it was one possible sign of macular degeneration. But it didn't seem to get worse. Still, I was pretty anxious to stop it there.

I was surprised when it turned out that the spaces in the letters disappeared when the ophthamologist multiplied the drops I was taking, and very pleased, yet still didn't know what was going on. Hah, and still don't. As in, what caused the little hemorrhage? One doesn't want a bigger one. Did the little hemorrhage cause the blank spots in the letters? or was it no big deal?

So, the drive down to Santa Rosa was not a rush job like the one back in January, and the comments on results have not been rushed either, and that is actually nicely reassuring.

On why they are in Santa Rosa I have no idea, maybe some of them are from there. It is not all that far from SF, and is, I think, a very congenial place to raise a family. Sonoma County is so very beautiful. Calistoga and Napa and Geyserville and Healdsburg and key wineries are not very far away.





Edit, one sentence was in waaay the wrong place.

Just reading and sympathizing.....((((HUGS))))

After work yesterday I had an excellent talk on the phone with the retinal specialist. He didn't rush, answered all my questions - which prompted more questions, and more thorough responses. I was gratified by the completeness of the discussion, and while the actual cause of what is happening is still not clear, some things are.

For example, that little hemorrhage: there was no clotting or plug in the blood vessels, and no deformation around it to show that there had been, which is good. The whole process of that plus the inflammation is fairly subtle, which is also better than the opposite, not subtle. It has been substantially reversed by the new meds regime, and keeping that up is his first choice of what to do, with no worrying about it being a problem to do that, and to keep it up until all signs of inflammation are long gone.

Then if tapering off the meds starts up the inflammation again, then we go with the shot mentioned in one of my earlier posts, I think, which is also a steroid compound, but much longer acting than drops. Yes, I asked, it doesn't hurt at all. (There is a numbing drop, and then an injection with tiny needle.)

Why the inflammation in the first place, well, there are three reasons he mentioned as possible, and I won't go into it here; that it is a round robin of post surgical possibilities, some of which have to do with an immune mechanism.

On the right eye, he is not strong on my acting on it now, that cataract is very slow. I had asked him re now or waiting til medicare kicks in, a few years from now, because even with insurance these eye events have cost me thousands of dollars. I had also been worried that if I could put it off, would it mean that the "ligaments" (zonules) holding my right eye lens might get worse, increasing my chances of having this whole thing happen in the right eye - and he said no, that amount of time wouldn't affect it that much. So that is a big relief, as I psychologically, gutwrenchingly, think now is a dumb time to do the right (good) eye.

I asked him about setting up coordination between the cataract surgeon and his office in case the same situation happens when I do finally have the right eye surgery, and he mentioned that I could have it done down in that vicinity if I wished and that would relieve the problem of the potential four hour car ride at followup retinal surgery time, and that yes, they'd coordinate. This may all be too much information I'm giving here, but this last part contributes to my sense of relief today.