h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Well, I guess I should start a new thread for this.

I've now seen both a neuro-ophthalmologist and my original Brain-Care Specialist, the good surgeon, Dr. McC. I've posted some things regarding this in other journal entries:
Headache (now with added double vision) http://bit.ly/1gRmElO
and AAARRRGGHH Avast Ye (From 9 years ago, yikes!)
http://bit.ly/1a5EcZI

To recap:

A year and a bit ago, Sept 2012, I had a persistant headache. My main brain-care specialist, Dr. McC wasn't too worried about it and just recommended I see a neurologist. For various reasons (see Headache above) I never did see one.
Everything seemed pretty groovy until 5 December, 2013 when, rather suddenly, my returns.

This, obviously, has me rather concerned. I contact Dr. McC's staff. He orders a new MRI. I was already scheduled for one in January, but I find a more convenient MRI center and get one ASAP. (It sure beat the hassle of going to M.D. Anderson Cancer Center in Houston. Short drive, no waiting. No $10 parking fee.) Dr. McC also recommends I see a Neuro-Ophthalmologist as soon as reasonably possible. He recommends a Dr. Lee at Methodist Eye Center (also in the Houston Med Ctr, another teaching hostpital).

Dr. Lee has a busy schedule and they tentatively schedule me to see him on 13 January. I have Dr. McCutcheon send his notes over and they find an opening for me on 3 January. Unfortunately, when I see Dr. Lee, he has only received my latest MRI and Dr. McC's clinical notes; he doesn't have all my previous MRIs to compare with the latest. (There was some fun with a couple of med students. I think I posted a more detailed missive concerning that under Aaargh Avast ye. But basically, without previous MRIs, there's not much he can tell me other than he sees some mass on my clivus that could be causing my 6th Nerve Palsy and Diplopia . But that mass could also just be scar tissue that hasn't changed much in the last several years. He gives me three options:
1. Do nothing I'm not already doing, ie. turning my head to the left and using an eyepatch (on alternating eyes) as needed to cope with the .
2. Attach a prism to one of my eyeglass lenses to compensate for the deviation.
3. Do corrective surgery.

I'm scheduled to see him again in March and April. He was really disappointed I didn't let him dialate my eyes that day. I drove my self into town and it was a very bright ny day. Dialation, and Houston freeway traffic is a recipe for suicide. So, in March I'll have my mother drive me up there and let him get his dialation fix. (I think it's rather pointless as the problem is obviously BEHIND my eyeballs.) Until then, I've already ruled out option 2 as my double vision varies, mostly improving over the last couple of weeks. A month ago I couldn't had pretty much no binocular vision unlesss I turned my head quite far to the right. At the moment, I can see my tablet screen right in front of me. For anything farther than 3-5 meters away, I have to turn my head about 10 degrees to resolve two images into one. If I were to use a prism, at best I could see only straight ahead. I'd have to turn my head to see anything to my left or right. As it is, I can see "straight" when I look at anything to my left but always when I look to my right or directly ahead very far.

[EDIT: I just lost 30 minutes of work because of a failed preview... and the "rocks" in my Scotch have melted.]

So, as it is, options 2 and 3 are pointless now as we don't know what's causing this and my deviation is variable.



Today, I saw my main Brain-Care Specialist, Dr. McCutcheon. I was his first patient of the day and I didn't see him until well over an hour after my appointment. As I waited, one of the office nurses poked her head into my exam room to see if Paula, McC's clincal nurse, had popped in. She hadn't. There was some confusion over whether my MRI scan CD had been delivered, or not, or was unreadable/corrupt or just incompatible.

Finally, Paula and Dr. McC find the CD, but it was "corrupt" according to the imaging library guys. I start brainstorming and offer to walk a couple of miles (in the rain) to Dr. Lee's office and get a copy from them if they can't get a courier. Why not. I'm stuck in the Med Ctr anyway. I'm not going anywhere until Dr. McC sees the latest MRI and sees if there is any significant change.

Then I suggest we just see if there is ANYTHING on the disc. Dr. McC has to log out and back in to get access to Windows Explorer so we can access the CD/DVD drive. That worked.

OK... so... Hmm...

There is a significant change in my MRI from the last ones.

But we don't know what exacty it is. Basically my clivus (that's the bony sloping bit that is in front of where one's brain stem enters the cranium, where one's pituitary gland is and where the optic nerves cross through), a bony structure that should show up as dark on this MRI is now bright. It's not bigger! There's no obvious growth! But it's showing up in a scan that it shouldn't. On this type of MRI, fluid areas show up as bright and since bony areas are rather dry, they show up dark. But on my last one, there's a sudden light patch where there was a dark area.



So...

I don't know what's coming.

But I'm OK with that. I'm not stressing over it. 9 years ago, when I first had I learned I had a TOOHMehr! And I kinda freaked out a bit.

But this time... Well, whatever happens, I know I'll cope.

It seems to me now that stressing out would be about as helpful as saying "Bless You" or "Gesundheit" after someone sneezes.

In other words, no use at all.


I do take pride that I rather stumped the med students thought.


[my previous version of this was better]

Because of some unresolved API issues, the above post is unreadable in Pliny.

Sorry about this Grim, I'll slap some test code in quickly, but I've a feeling it's an API thing.

Let's not stress over Pliny or any of the above until we find out the answers

My eldest daughter, Virtuouschuffed began getting vision last summer. The scan shows a slight lesion on the brain, which could or could not have been caused years ago in a childhood fall.

They are monitoring her and will see her again in about 6 months time.

In the meantime her brain is beginning to compensate on the vision. She only notices it if she moves quickly.

Please keep us informed of the medical reports. Have your headaches eased off?


lil x

Switched the h2g2 links that were breaking the h2g2 api (go figure!?) and it's displaying now.

Do keep us informed Grim

Oh dear Baron Grim! Waiting is horrible, but you sound very mellow and chilled about it all.

I sympathise with the double vision thingy, as this is one of my symptoms of MS. I don't think many people realise how difficult and exhausting life is when your sight is so affected. One way I cope is *not* to wear my distance glasses. I am short sighted, so if I take them off the double vision effect gets all blurry. My brain has less to cope with that way. At least I know the cause of my idiotic sight.

Let us know how it all turns out please.

being about such medical things, when one can't do 'any good' by 'panicing' is defiantely the way forward... Even though some people often find it strange, how one can be relaxed and chilled about it,
So.... a light spot, where dark should be.... (on the scan), this is near the base of the brain/top of spinal collum.... could it be retained spinal fluid, not draining.... probably not actually if I think about it a second longer... taht'd probably show up clearer, (maybe), on teh scan, as increased pressure, 'back' from any 'blockage'... (err, if that makes sense) Its been too long since I did proper biology stuff to remember actual physiology of stuff like this accuratly Although... raised CSF/ICP might cause both double-vision and headache (from personal experience they're not very nice headaches eitehr....)

Yes, lil, the headaches have gone away. The first couple of weeks after the diplopia started I could feel some pressure/pain behind my right eye. But I haven't had any headaches in the last 2-3 weeks.

Pastey, thanks for the link swap.

I'm definitely noticing improvement today. Most of this week I've been able to see straight ahead or close to it. It's usually better in the mornings. I think looking around, scanning side to side and near to far makes it worse. So, driving/riding and shopping are pretty tough.

But just now, sitting on the couch watching TV I'm able to slowly turn my head progressively farther to the left and still see one image. I can't look to the right quickly other wise . But if I go slowly it works. That's huge improvement over where I was even last week.

I'm pretty functional now so I think I can rule out any need for corrective surgery. I still don't know what is causing that bright patch on my MRI. I suppose that might be good news as if it was something dire, I'm sure my personal brain-care specialist would have called me back in by now.

I hope the improvement continues!

Well, it has improved. Greatly.

This week is much better than previous weeks. I've been able to see straight ahead all week and I've seen great improvement when I look to my right. There's still some but my eye catches up after a second or two. If I'm patient, I can see straight nearly as far as I can look to the right. Oh, and I don't get that weird, unpleasant feeling when I look back ahead as bad as I did before.

Great news Grim! I hope it continues!

It's already good enough I see no need for correction, surgical or otherwise.

5 weeks later...

It's still good enough that I see ([edit] no pun intended) no need for correction. Not only that, I've had an appointment with the diplopia specialist and she agrees. It was a good day when I saw her. We had a nice discussion about how it may ebb and flo, about how as long as I can usually see straight ahead, there's little reason for surgery, or botox injections (really?) or what-not. I don't even have to come in for Dr. Lee's dialation appointment. (I believe that eye doctors secretly have a fetish for dialating patients' eyes. It's not necessary, they just get off on making you relatively blind when you leave the office, It's a power trip.)

However, that said, I'm definitely not OK. After just a couple of beers, I can't see to my right in single vision. Obviously, my Sixth Nerve is wore out. Once I'm tired or I have a bit of alcohol, it gives up. I'm still happy that I can usually still see straight ahead. When I can no longer see straight ahead, I know I should have been home an hour ago.

A year later...


It's back.

Like last winter, I felt a bit of sinus congestion (no infection that I'm aware of this time), then a prolonged mild headache behind my right eye. And now I've got the diplopia again.

It's about as bad as it was last year. I can see nearly straight ahead close up, but need to use an eye patch for driving or walking around. I emailed Dr. Lee. He replied and told me to make an appointment. I don't think much will come of it.


BTW, Lil... How's your daughter? Any progress on the ?
And you Lanzababy?

I made an appointment as requested...

I don't know why. The earliest he could get me in is the end of March.

When I emailed him, I said I didn't think an appointment was necessary. I just wanted to know if he could recommend anything to minimize the diplopia. I had read that if it's caused by inflammation, corticosteroids could help. Whatever is causing this, I expect it will be over in two and a half months.

Oh gawd, that's a bummer. I'm really sorry to hear this. Let us know what the verdict is. My sight isn't so bad at the moment, unless I am very tired. Although I think I am getting used to the world looking all blurry like a Monet painting.

Well, it's been a full week of and day 10 of the . The is definitely worse this year than last. I only have stereo vision in a narrow range with my head turned quite far to my right. That's actually about the same as last year. But what is worse than last year is how little I can even turn my right eye to the right, regardless of the double vision. From my estimate, my right eye will only turn about 10° right of center. Also worse is the faux dizziness I experience when trying to use just my right eye. Last year I could swap which eye I covered without much noticeable difference. This year though, when I try to walk using my right eye, I feel very wobbly. I think it might be caused by that eye tracking slower than my left so it makes everything look wobbly. I feel like I need to keep using my right eye as much as I can to "exercise" it, to minimize the permanent effects this might have. But maybe it doesn't matter and I'd be better off letting it rest. I think letting it rest may minimize the pain I feel behind that eye. Yesterday, a day off for MLKjr, it did seem that every time I tried to use my right eye, either alone or for stereo vision with my head turned, the spasms of pain behind my eye increased. So far this morning it hasn't been bad sitting here looking at my computer screen, so I'll keep it up for now.

Another thing I've noticed is that my vision in general seems rather diminished. I've had trouble reading and seeing in dark places.

I'm basically using these journal entries as a place to keep notes on my condition. It has helped refresh my memory of previous bouts quite well. I think it will be helpful to be able to track the deterioration as it progresses.

I'm sorry to be so late responding My Lord t'internet has been falling out all over the place


My daughter's vision went on for quite some time and then began to reduce. She is still being monitored by the specialist because she has a 'freckle' at the back of her eye, which they want to keep watch over.

Keep up with this journal, it's amazing how quickly we can forget things which could be important clues for the


lil xx

I should also make some mention of the social stigma associated with . Having diplopia like mine, where my eyes are significantly crossed depending on the angle I'm looking, comes with some unwanted embarrassment. I really don't want to be seen with my eyes crossed. I really don't want to even see myself in the mirror with my eyes crossed. Each morning I'll take a look at myself in the bathroom mirror and turn my head as far to the left as I can while keeping single vision, just to check for any improvement, then as far as I can still see my right eye staring into itself to see how far its range goes. When I do that, my left eye looks much farther to the right with the iris all the way to the inside next to my nose. In other words, I can see farther to my right with my left eye than I can with my right, much farther. And my eyes appear very crossed. Worse than crossed because they're asymmetrical. This is culturally the appearance of some sort of mental condition. It's the face everyone pulls to entertain a child. Ricky Gervais has made it an art form on twitter with his bath pics.

So, when I'm in public, I'll usually wear an occluder I've made. It's like an eye patch that slips over a lens of my glasses. The one I made last year, I cut out from a vinyl eyeglass cover that came with one of my eyeglass cases. It worked well enough, but it was a bit larger than it needed to be and it tended to smear finger and hair oil on my lenses. This year, I made a couple of new ones out of a lens cleaning cloth. These I made just large enough to slip over my lenses. Fortunately, both my normal and near vision glasses have the same size and shape lenses.

So, when I'm wearing one of these, I inevitably get people making references. These are invariably unimaginative and dull, usually just an "Aaargh" or an "Avast!". Still, it's better than what I might expect if they saw my crossed eyes. I hate to even imagine what I might get then.