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

My friends now know that when I wobble, not to worry. But I do see expressions on stranger's faces that look as if they think I may be a crazy drunk lady. I just have to smile and ignore them.

Last week, someone asked me, "is that a computer?" I guess they thought I was wearing some cheap Google Glass knockoff.


Progress report. still bad but showing some improvement. I've been using my left eye almost exclusively for the last three weeks. As I previously mentioned, covering my left eye and exerting my right did intensify the pain. Now the headache is gone so today I'm trying to use my right eye again. I was able to use it a bit, just not on its own. My new, homemade occluders allow me to adjust the gap next to my nose where I could still see in stereo so that has been an option I didn't have last year. Today I've moved the occluder on my "work" glasses, the ones that only feature near vision to arms length, to the left lens. I can turn my right eye a bit farther out than earlier, but still not fully. Also, the "swimming" effect is still prevalent. I suspect this is either caused by a delay in the tracking or possibly some loss of the interstitial pauses your eyes do as it tracks from object to object. This means I'm seeing movement where normally I shouldn't. This doesn't make me feel great. I'm not actually nauseated, but I definitely don't feel 100%.

When I stand up from my desk, I switch glasses and eyes. We'll see how this works out.


Today I need to Copy & Paste some of these notes over to my Evernote files so I'll have them handy.

OK... Only three weeks left until my appointment, but I'm finally starting to observe real progress. Today I've spent most of the day without an ocluder. I can see almost, but not quite straight ahead. I still use one when using my medium-far distance glasses but removed it from my near-mid range glasses I use at work.

I had my appointment yesterday, finally. Some of Dr. Lee's first questions annoyed me a bit. "Did you get an MRI recently?". No, you didn't request or schedule one. "Have you seen Dr. McC recently?" No, he sent me to you last year. "Did Dr. McC schedule an MRI this year?" No, there wasn't any noticeable tumor growth, just fluid on the clivus.


Anyway, like last year he brought in a couple of med students to see the Freak!
Seriously, my case stumped both the students. One confused my chordoma with a chondroma*.

But I think I got through to him. My case is different and apparently my case is "interesting". Interesting in the sense that he doesn't know why A.) if my nerve VI palsy was caused by the chordoma, why it goes away. B.) why it has returned twice.

It seems that the sixth nerve palsy I have, related to a chordoma, doesn't act like they expect. It also can easily be misdiagnosed as related to something else. He quizzed the med students about it.


We decided the best thing right now is to have Dr. McC at MD Anderson schedule an MRI there since they have all my previous MRIs on file for comparison. The two of them will consult and the plan now is to see if we can find exactly what is causing my and and stop it from happening again rather than just waiting to see if it goes away on its own as it has done in the past. I expect we'll need to bring a sinus surgeon in at some point.




*No, I don't know enough to know the difference, but I'm not a med student.

Starting to sound like even more of a faff than it has been!

I should also note that he was quite impressed with my unique ocluder.

With my sixth nerve palsy, my right eye doesn't turn outward as it should, but the degree it does so varies. When this bout first started I couldn't see with singular binocular vision except when looking very far left, just over the bridge of my nose. Looking straight ahead I had double vision and the farther right I looked the farther apart each image becomes (and one also slightly rotates counter-clockwise). Currently I can see JUST BARELY straight ahead without . Rather than wear a proper eye patch, which usually presses against my eye lid causing irritation, I wear an ocluder over my eye glass lens. Last year I fashioned one out of a minimal, vinyl eye glass "case" that just snaps over each lens by cutting one side out and trimming it to fit the lens. Last year I would swap this from one side to another as covering either eye resolves the double vision to one image. This year a fashioned a new one out of lens cloth. I made two, one for each pair of glasses I wear, normal and near vision. Since these were soft cloth, instead of the stiff vinyl, I could adjust the position. If I slide it out a bit, I can regain depth perception by turning my head right (looking left). I started with them each the same width as my lenses, but after a bit more progression I folded one into itself to shorten its width down to about half the lens width. Now I can slide it back a bit more when my vision is better without completely blocking my far right peripheral vision and still get depth perception in the gap between the ocluder and my nose.

I've looked around the web a bit and I don't think anyone else has come up with this solution.

You never see anyone else wearing half an eye patch.

I had my MRI and appointment with my lead brain care specialist, Dr. McC earlier this week. We don't have a definitive solution, or plan going forward. We all seem agree it is likely sinus related, but we're not sure exactly what is causing the palsy. I was given a 'script for a stronger, steroid based, anti-inflammatory to use the next time I feel like I've got some sinus condition or the next time I get a non- related, skull splitting . The MRI this year looks exactly like the one two years ago. I was rather disappointed to find out that in the last year they've done nothing to get the MRI I had imaged last year at an outside MRI clinic imported into their system so they can look at last year's and this or the previous year's images side by side. There was some problem with the files on the disc I brought them last year and their med library techs just said the files were corrupt. We were able to view the images in the office last year after I suggested just opening the images straight from the disc, rather than through their system. So, on my way home I stopped by that clinic to get another copy. Apparently that clinic has two ways to copy the files to disc, one includes a viewer and one doesn't. Apparently they sent them the wrong one last year. I got a copy each way and will send them both. I also made two more copies for contingency.

Anyway, they also recommended that the next time this happens that I see an ENT and get "scoped". But he also said that the ENT will see all my scar tissue and may not know what to make of it. Well, rather than wait for the next I've made an appointment with a local ENT. I'll bring him a set of the scans from last year which were taken while my head was still exploding and my clivus lit up from some sort of fluid. Hopefully he will also be able to arrange to either get copies or see all my other yearly scans taken at MD Anderson. I really hope something jumps off the screen at him and he'll see a preventative procedure we can take. But if nothing else, the next time my and I'll have an ENT that's familiar with my situation to call up and make arrangements to stick a camera up my nostrils and into my skull.




Just to note for future reference, it has now been over 90 days. My progress is much slower than last year when at this time I did not need an eye patch at all and could look some degree to the right with single binocular vision. Currently I can see straight ahead only at short distances or at long distances for brief periods. With effort I can see to my right at short distances for short periods but at distance I cannot. The maximum range I can turn my right eye is approximately 20°-30°. When I close or cover my left eye I get minor disorientation as my right eye doesn't track quick enough to keep pace with my head movements, most notably when walking.

The ENT had me schedule a C/T scan, which I got last Friday. (While I don't like the radiation involved, it is so much less annoying than getting an MRI.) Since my ENT appointment, I've noticed only some minor congestion in the mornings with a few isolated blood clots. But apparently, the swabbing the ENT did of my nostril showed a high level of staph. So, I'll be on antibiotics for the first time in maybe a decade for the next 30 days. I wish there were better alternatives, like targeted bacteriophages rather than wiping out what's left of my microbiome, but whatcha gonna do?

My follow up appointment with the ENT isn't until Friday, so we'll see then if we have any plans going forward. This week I haven't felt any real progress in my . Usually it's a bit better in the mornings, but this last weekend it seemed like it got worse quicker in the days and stayed worse than normal. Today hasn't been too bad though.

I just have a hard time believing that nothing I do will help "rehab" my eye, but it's not the muscles that have the problem, it's the nerve. So maybe resting it IS the proper thing to do. Or maybe it doesn't matter one way or the other.

Since when does insurance only cover a partial prescription?

I went to pick up the Rx my Dr. called in yesterday for a 21 (not 30) day term of antibiotics. When I got home, I see that it's only been filled for 14 days with a "partial refill available". I assume maybe they were just short on stock, but no. When I call I learn that the insurer requires "pre-approval" for more than 14 days on this drug. So, if I want the insurer to pay in full for it (minus my $10 deductible), they'll need to call the Dr. to call the insurer to give pre-approval and I'll need to return the portion I just picked up as it is still pending payment. Either that or I pay $105 for the remaining 7 days.

I probably wouldn't be so irate about this if they had just called me and informed me of this before I picked up my prescription, or even WHEN I picked it up.

But what the hell is up with needing pre-approval for an antibiotic? What the hell is up with filling only a partial term of antibiotics? That's just going to encourage folks to take a shortened term of them and create even stronger infections.

Just got a call from the pharmacy. Apparently, the insurer convinced my doctor that 2 weeks was enough.

Don't get sick in America

Nothing good has happened since I last posted here, at least regarding my .


I'll assume the antibiotics did their job but I don't feel that different. Not surprised by that as I didn't realize I had a staph infection anyway. I stopped taking the decongestants a week early as I didn't notice any significant change with them either. I wasn't having any particular difficulty breathing and they didn't seem to improve my diplopia. I thought I was getting a bit better, slowly, regardless as for a bit there I could usually fairly straight ahead at least in near vision and even at distances for a few days here and there. But this week has seen all that progress erased. I'm now having to turn my head even at my computer. I'm more and more convinced this may be permanent, but there's a few more things I need to try. I'm already scheduled for sinus surgery next month. That was the ENT's recommendation if the decongestants didn't work. If nothing else, this "ethmoidectomy" should make it less likely I'll get sinus infections. My biggest concern is preventing another severe, 30+ day headache and further damage to my abducens (VI) crainial nerve, if that is indeed, as I suspect, what caused all this in the first place.

I have noticed a bit more mucous this week so I'm going to finish off the Rx decongestants and maybe try the anti-inflammatories I have. If I regain a few degrees ahead maybe that might indicate something, maybe not.

I'm also switching my patch to my other eye. I've exclusively been patching my right eye, the one with the palsy, as this year seeing through it exclusively makes everything seem a bit "swimmy". It seems to move a bit slow so as I walk I feel a bit disoriented or "drunk". But I'm wondering if by doing so I've delayed some improvement. Everything I've read has indicated that exercise is futile since it's not a muscle, but a nerve issue. But at this point, I'll try almost anything if it will get me back to seeing straight ahead. Also, if I partially patch my left eye, I have better peripheral vision. With my right eye partially patched, as I've been doing, the patch is pushed to the right of my eye glass lens and acts a bit like a blinder to my right. With my left eye partially patched, the patch is still pushed to the right but on my left lens, so it basically just blocks the view ahead and of my nose. If I can adapt to or resolve the "swimminess" this might be a better option than the right.


I was patching like this:
([///O//])/\(O)

Now I'm trying this:
(O)/\([///O//])


One of the problems with the second method though is the smudges I get on my glasses when the lens cloth patch I made slides across the lens. Handling the patch gets it oily after a while inevitably. I may have a better solution. I've ordered some reusable, black vinyl labels. They're made for labeling jars and drinking glasses or whatever. The ones I ordered have a "chalkboard" surface so I could get creative if I feel like it, but that's just a bonus. Anyway, they're 1" x 2" and I can trim them to fit my lenses.




On another note, I should mention my insurance policy this year is definitely worse than previous years. For the first time I received a bill for $1,300 for my share of the cost of my MRI. That has always been fully covered in the past. I've paid a LOT more this year than any since my original surgery. My Rx costs have at least tripled as well. Considering I haven't seen an increase in wages for several years, I've effectively taken a cut. This year our contract is being re-bid. This will be the fourth contract I've worked under at the same job. Every contract has been worse than the previous and I expect this year to be even worse even if I'm lucky enough to be kept on. I expect I will be as my position is unique and we have future projects already lined up for me, but who knows.

The vinyl labels seem to work well. I used two strips so that I can adjust the width depending on where my vision overlaps. The "swimminess" seems to be declining a bit, or maybe I'm just adapting to it.

Still, I'm a bit less confident when I try to ride my bicycle. I've been OK most of the time, but Thursday I rode into the next town to catch a band. This meant riding down the shoulder of a highway and I gotta say, that was disconcerting. Without stereo vision, I really can't judge the topography of the road in front of me as well so sometimes I hit dips, bumps, and potholes that are bigger than I judged or I don't see them at all. And considering the pitiful state of the roads in my area due to the republican budget cuts gutting road maintenance this is more of a concern.

OK... this is weird. After going a week with my left eye partially occluded, I made a new vinyl strip for my right eye (a bit diagonal so I can still use the bottom of my progressive bifocal lenses for arms' length distances).

And now I'm noticing just as much "swimminess" as I did last week occluding my left eye. This requires further testing.


Progress is reversing overall though. For the last two weeks I mostly haven't been able to see anything straight ahead, even at arms' length. And after driving/shopping stereo vision is down to a sliver over the bridge of my nose. My "trick" of forcing my right eye right works only as long as I don't move my sight line and typically afterward I have to turn my head further right for some time. I've taken a few of the decongestants and anti-inflammatory drugs I have, hoping for some improvement; but I can't say there has been much if any.

Oh, and it has officially been six months now since onset.

Wait... belay that last remark. That was a counting error.

It's been FIVE months.

I think if we had the US medical insurance system here in the UK, I'd just about be pennyless by now, from treatment... and, heck, surely it'd affect one's judgement on treatment calls?; I'd have been far more likely to say no to radiotherapy I guess, were I too see the bill for it I think the chemo alone comes in at circa £1000 just to buy the actual chemo drugs, let alone teh nursing time, clinic time, PET scans, etc My biggest cost battle is trying to convince the local council I'm blind, so I can get a damn bus pas! - I'll have two trips on teh bus, a day, for 15 days, once RT starts, and ... taht's a lot of beer money on travelling in...

Not necessarily. If you had insurance to start with, you'd be alright as it's just this sort of thing that our insurance policies typically do cover. You'd max out your deductible pretty quickly and your co-insurance (the percentage of cost you're expected to pay) and hit your maximum out of pocket for the year. Your insurance would cover the rest of the costs for your chemo and radiotherapy. In a year, you might spend out of pocket for treatment several thousand dollars but as long as you had insurance to begin with, you probably wouldn't be bankrupted. Without insurance, yeah, you'd pay your life savings pretty quickly, especially since without insurance, you have no bargaining power over hospital costs and are charged their very highest rates.

That said, you might not have discovered the lymphoma in the first place because you might be less likely to go in to get checked as office visits always incur a copay so Americans don't go to the doctor until they're typically really feeling knackered.

ahh... in which case I'd never have been diagnosed - I only went to see the GP because... William told me too... I was all up f for the typical male thing of 'ignore it and it'll go away'.... even though it was already at the point I couldn't any longer put my arm to my side, as the lump was so big yeh.... - and I@ve a biomed background, adn I'm still that crap - a story, whihc, especially because its 100% true, has gotten some epic laughter from various nurses and consultants in the hopital pah... I still recon it'd have gone away on its own accord, with a decent oral administration of vodka and cigarettes

I'm getting my head Roto-Rootered® today, an ethmoidectomy to open up the sinus passages on my right side. It's fairly minor surgery and the doctor doesn't anticipate much of a recovery period. I'll have some bleeding and stuff stuck up my nose for a few days and have to use a Neti pot 5 times a day for a few weeks.

I don't know if it will have any direct effect on my abducens VI nerve palsy and diplopia, but my ENT is hopeful. I mainly hope it minimizes my chances for future sinusitus and prevents me from getting anymore 30+ day headaches and further weakening of the affected nerve.

I had quite a scare yesterday when I was briefly led to believe my insurance wasn't going to fully cover this surgery because the health care provider was out of network.

It's still going to cost me about $800, but that's better than $2000+ I was threatened with simply because of a confused representative on the phone.