This is the Message Centre for Baron Grim

Sixth Nerve Palsy, REDUX

Post 61


Double vision, Ivrarely have that unless I deliberately cross my eyes, or turn my nevk very sharply to see behind.

Most recent two occasions, other than situations like that, on the moment of waking following total anesthesia.

It took a moment to re-coordinate my eyes.

Sixth Nerve Palsy, REDUX

Post 62

Baron Grim

And there seems to be nothing to remedy it that wouldn't be just as bad or worse.

According to the Neuro-Ophthalmologist I saw on previous bouts, my options if it doesn't resolve on its own is to have surgery that would basically lock my eye in a neutral forward orientation, have botulism applied to nerve of my left eye to balance out the weaknesses, or use a prism on my glasses to redirect my vision.

I don't see option a) as being any improvement on what I'm doing now. Option b) seems very risky and may cause more problems. And c) is not applicable because my eyes diverge by different degrees depending on direction of gaze and varies quickly over time. I see no point in seeing him again right now anyway as he'll just want to wait to see if it resolves on its own.

That said, I am considering finding another neuro-ophthalmologist as Dr. Lee did not find the connection to sinusitis and may possibly have misdiagnosed me as he did seem surprised that it even could resolve on its own, repeatedly, like it has in the past. I had to work with Dr. Internet and my own notes here to find the association with sinusitis and reports online of a (very) few other cases.

Sixth Nerve Palsy, REDUX

Post 63


Of the three options, I think I'd go with botox, which wears off after about six months, by which time, the condition may have improved.

Sixth Nerve Palsy, REDUX

Post 64

Baron Grim

I came up with my own alternative. I forgot to mention the obvious, wearing an eye patch. It doesn't really matter which eye I wear it on as both eyes are still working independently, but covering one eye removes the conflicting view. My right eye is the one that's directly affected, but it's also my dominate eye, so I tend to cover my left. The first eye patch I got was very annoying as it was too close to my eye. My eye lid and lashes would rub against it and become irritated. Later I fashioned an eye patch that slipped over one lens of my glasses. That worked quite well. During the previous bout, I used a strip of black labeling material (with a matte surface for use with chalk pens). It was only lightly adhesive so I could remove it or reposition as needed. I then cut smaller strips as I can still see in binocular vision when looking far to my left. I would adjust the strip or strips, one overlapping the other, to align with the point where my vision would split. This time I started with the same thing, but cut off the bottom as I can often see single vision when looking at things up close where my eyes would normally cross. I've since switched from the black material to non-adhesive glass frosting material. This is an improvement for two reasons. One, it keeps both eyes dilated equally rather one adjusting for the dark and one for the light. B) The black rectangle I was using previously illicited several questions about whether I was wearing some sort of computer or Google Glass like device. smiley - laugh

My Neuro-Ophthalmologist was rather impressed with my ingenuity.

I now also have an artisinal leather eye patch I can wear when out and about in public and goes well with my renaissance and steampunk outfits, or just when I don't want to bother with the glasses. My progressive lenses can be bothersome when viewing things up close as the sweet spot is a narrow patch at the bottom center of the lens and my eye doesn't always align with it comfortably.

Sixth Nerve Palsy, REDUX

Post 65

Baron Grim

Well, after 13 of 14 days on the AmoxCluv I've seen no significant improvement. Looking back on this thread, this makes it at least 15 weeks I've been dealing with this. smiley - headhurtssmiley - cdouble

Sixth Nerve Palsy, REDUX

Post 66

Baron Grim

I thought I had an appointment today. As I stand waiting to check in, I learn from the discussions the receptionist is having on phone and with the patient ahead of me that my doctor is stuck in surgery and canceling all appointments for today. When the receptionist finally addresses me (after ignoring me for phone calls and patients who walked in after me) I learn that the appointment I made yesterday was never actually made. "Who did you talk to?" I don't know, but I know I made an appointment for 3:00 this afternoon, but it doesn't really matter now anyway does it!? From what I've already heard, the earliest appointments are well into next week and filling up quickly. smiley - cross

So, I'm finding another ENT and starting all over again. smiley - headhurtssmiley - cdoublesmiley - crosssmiley - steamsmiley - bleepsmiley - bleepsmiley - bleep

I don't know if I've ever been this frustrated.

Sixth Nerve Palsy, REDUX

Post 67

Baron Grim

I thought I had an MRI appointment today... smiley - facepalm

So, I did as I said I would. I fired the previous ENT. I have now consolidated all my healthcare within one system (University of Texas, Medical Branch(UTMB)). I saw my new ENT Friday morning. He did a MUCH more thorough (deep) endoscopy and saw no sign of infection. Maybe the last round of antibiotics finished it up. But I don't feel any different. My new ENT, Dr. C, is a bit skeptical about whether sinusitis is the cause of my 6th nerve palsy. So, he ordered an MRI. The earliest appointment I could get was for... now. To complicate matters, Dr. C will be in and out of town this week and next so I was scheduled for a follow up with him Monday afternoon. Yesterday, I got a message to call radiology to RESCHEDULE my MRI. smiley - headhurts After spending 30 minutes finding the proper callback number and waiting on repeated hold, I finally get through to the person who left the message and discovered that the reason for the reschedule was that the radiologist needed to consult with the ordering physician, Dr. C, before getting insurance approval for the MRI. smiley - steam So, I've tentatively rescheduled for Monday evening, which will require postponing my followup with Dr. C... IF the radiologist and Dr. C can bump heads before then.

Another thing that disturbed me is that Dr. C is the first doctor who seemed to have any familiarity with my condition, and even that is academic. But he believes that if nothing is resolved within TWO WEEKS, it's unlikely to be resolved. I'm now one what? Week 18, maybe 19.

I'm very worried this diplopia smiley - cdouble is permanent now.

I'm also extremely depressed.

On unrelated, but very smiley - blue note. 60 years ago tomorrow, Laika was launched to a certain and painful death, placed aboard his Sputnik capsule by the only humans who ever showed him any love and care.

Sixth Nerve Palsy, REDUX

Post 68

Baron Grim

I'm now worried about my "good" eye.

Here's the thing. This 6th nerve palsy is directly affecting my right, dominant eye. But I've been partially covering my left eye this whole time. It's just weird; I don't really understand what's exactly happening. I would think that this should only effect the direction my right eye aims, but it effects both together. I can see a single image when I look far to the left (turn my head to the right). My right eye is able to turn only a little to the right of straight ahead. I would expect that within that range, my left eye should look in the same direction, but that's not what's happening. Say I turn my head to the right and look, with both eyes at something in front of me, then slowly turn my head to the left. What actually happens is my right, dominant eye will keep looking at the object but as my head turns, my LEFT eye increasingly drifts further to toward my right, i.e it crosses.

OK, so I can cover either eye and see a single image. I've opted to just cover the left as my right eye is not only dominant, it has sharper vision. So, I've sacrificed my range of vision to my right to have clearer vision straight ahead.

The other day, while taking my daily walk, I tried closing my right eye, removing my glasses to uncover my left and tested to see how that worked.

I felt instantly disoriented. It was a bit like being dizzy, specifically like being dizzy from spinning. It was like I was falling over to one side. Not only that, everything seemed to "move about". My left eye isn't tracking objects properly. Even right now, with my right eye covered looking at this screen, if I shift my head side to side the image seems to track a bit. It also seems a bit tilted.

I just tried to toss a banana peel into the trash can and missed by at least a foot to the left. smiley - laugh

I'm thinking this might be akin to atrophy, that if I utilize my left eye more often, some of this might resolve. I'm also thinking, I should probably start using my left eye as much as I can because if this palsy doesn't resolve, I'll need to use my left eye permanently. I was thinking about driving. If I can switch to my left eye, I'll be able to see a wider range without turning my head so severely when looking right.

So, I've switched the "patch" on my work glasses, which are for reading distance and closer only, just to try to reverse any atrophy that's occurred. I expect to bump into a few walls if I forget to swap them when leaving my desk. smiley - doh
I also will probably knock a lot of things off my desk since I keep reaching about 10° to the left of where things actually are.

Sixth Nerve Palsy, REDUX

Post 69

Baron Grim

My new ENT still hasn't seen me. It's been nearly a month since my MRI. He's been out of town for holidays and waiting for CDs of my previous scans, but according to FedEx, they received them Monday.

I'm now certain this is permanent and I'm rather irate (furious) about these delays.

I'm seeing my optometrist tomorrow after postponing my semiannual appointment hoping this would resolve. My dominant right eye prescription probably needs a tweek, but my left eye that I'm having to rely on much more is very blurry now through various glasses. I'm switching between at least 5 pair of glasses to cope!

I look forward to problem solving with my optometrist tomorrow to find out what minimal set of single vision and bifocal lenses will simplify my life. Progressive lenses are out, I'm afraid, as the near vision, bottom regions are typically a narrow zone directly center leaving me closing one eye and twisting my neck around to find the "sweet" spot to see damn near anything requiring any precision.

And I'm tired of dropping drink glasses off the edges of tables and misstepping to crunch acorn caps underfoot by 6-12 inches to the left.

Sixth Nerve Palsy, REDUX

Post 70

Baron Grim

I guess I should update this before I forget.

I've seen my ENT and he sent me back to my Neuro-ophthalmalogist. Before seeing him, I tried to get an MRI and CT while I was having one of my headaches that I suspect is related to my condition. Unfortunately, my insurance company requires at least a week delay for any MRI scans. Since my headache wasn't that extreme, and I wasn't sure if it would last, I waited the prescribed time. If it had gone away I would have just skipped the scans. The headache was just barely noticeable at the time of the scans and so they were inconclusive. That's when my new ENT requested I see a neuro-ophthalmologist again, and since there are so few of those available, that don't specialize in things like cerebral palsy, I made an appointment with Dr. Lee in Houston.

And how did that go?

Exactly like the previous two times, basically. He brought in some med students to gawk at me, and gave me unappealing options: Strabismus surgery, radiation, continue wearing eye patches. The radiation *might* improve it a little, maybe, but it's more radiation to my head. NO! Strabismus surgery might be something for me to think about in the future, especially if it progresses to the point where I can't even point my right eye directly forward, but as it is now, I can still use each eye individually and still have a narrow band of stereo vision to my far left. I asked him what HE would do with the options he gave me, and he agreed that my choice to basically do nothing, keep wearing eye patches is probably the best of bad options.

He did seem a bit frustrated with my lack of diagnosis for what is actually causing it. He kept stressing to his students that my problem could either be the underlying disease, the chordoma, or it could be the treatment of the disease, the endoscopic surgeries and proton radiation. He said he'd be sending the recent scans back for "adjudication" to see if he could get a better diagnosis, but he doubted they would do that.

So, what the smiley - bleep am I supposed to do with this?

The only thing I think I can do is wait for another really bad headache and if I can't get the insurance to cover immediate scans, pay five grand plus out of pocket. Maybe then they can see exactly what is damaging the nerve.

On a side note, he kept mentioning some arcane phrase regarding the origin of my tumor, and how it was a remnant from my embryonic tissue. The phrase he kept referring to was vaguely Greek or Latin. "Somthingotony (verb)s somethingonogy" or something... He mentioned to the students how at some point in our development we resemble other creatures, from horses to lizards to fish, how we briefly have tales and such. He mentioned this the last time I saw him but I forgot about that. He did mention that this philosophy isn't necessarily true, but he found it interesting in relation to my case, somehow. Anyone who has studied philosophy, medicine, or classic languages wanna take a guess and what that phrase he used was? The first and last words somewhat rhymed.

Sixth Nerve Palsy, REDUX

Post 71


"Ontogeny recapitulates phylogeny."?

Something to the effect that; 'Structural development of the embryo tends to repeat the evolutionary history of the organism'.?

A concept attributed to Ernst Haeckel, which does have some substance to it.

Sixth Nerve Palsy, REDUX

Post 72

Baron Grim

THAT'S IT! smiley - applausesmiley - cheers

Sixth Nerve Palsy, REDUX

Post 73

2legs - Hey, babe, take a walk on the wild side...

My <2cents is on previous medical intervention, having caused it..... Drs seem very good at being magitions in their own eyes, at, E.G., curing a cancer..... whilst ignoring the fact you've got all these broken bits of your body and mind as a result... "but....".... "but......."... "but......."... "thje has gone! we've cured you"; so you can't walk,/move/function... but.... we've cured you!" smiley - laugh possibly...... certainly in the UK, the so-called 'follow-up' to treatment follows those lines in my experience... smiley - laugh Does the eye patch still work? smiley - coolsmiley - pirate

Sixth Nerve Palsy, REDUX

Post 74

Baron Grim

Eye patches work, they always will I guess. I have various patches and methods, from the traditional leather pirate type patch, occluders that clip on to my glasses, and decal like stickers I stick to my eyeglass lenses. I have and use both left and right patches. Both eyes work individually, but my right (dominant and sharper) eye won't turn to the right. If I want to read or use my camera, I can either patch my left eye or leave both uncovered. If I want stereo vision I have to turn my head right and look over the bridge of my nose. It works better close up. When I'm driving or smiley - biker I've trimmed one of my clip-on, right side occluders so that I can see a bit of peripheral vision to my right. I'm going to order a new set of bifocals for driving that have only distant and intermediate lensing so I can see the road and my instruments. I'll apply one of my decal patches similarly to that trimmed occluder. At work I have an old set of progressive lenses that still work well enough. I have a small decal on those that only obscure my left eye directly ahead and to the right so I can mostly use my right eye but also see stereo up close and to the far left. The prescription I used for my current set of bifocals is distant and near. I find this almost useless. I can hold my tablet, phone, or a book close enough to read with them, but can't comfortably use my laptop. I'd have to set the keyboard on my chest to read the screen clearly. I also have a set of bifocals that are just intermediate and near for when I want to do any sort of detail work. I don't patch them as it's usually easier just to close an eye when I need to. I also usually don't wear a patch around the house either. I keep the place fairly dark so when I'm watching TV I can just pick which of the screens in my double vision to focus on and ignore the other. smiley - cdouble

Sixth Nerve Palsy, REDUX

Post 75

Baron Grim

A minor update. I recently went for a follow-up with Dr. L. I was thinking it would be a waste of time as I haven't noticed any significant changes. One of his assistants, who saw to me first, really seemed to believe strabismus surgery was the obvious choice, and even Dr. L seemed to be almost but not quite recommending it to me. So, I've decided to just postpone that until my eye locks so far to the left to be a hindrance.

But they also noticed something new. I don't have the Doctor's notes yet, but he saw a deviation in pupil size (he mentioned something like "eschemia" I'll find the correct term later hopefully) and then mentioned something with the word "Parkinson's" in it.

My response, "You just said, 'Parkinson's'!?"

"Yes, we'll have to talk about it."

They put some drops in my eyes to see if it caused any changes to rule some things out or suggest other things (no specifics mentioned). Then they all left the room with the assistant informing she will be back to check my pupils in 5-10 minutes. 25-30 minutes later I stuck my head out the door and got her attention. My pupils seemed to be the same size, but I couldn't be sure. Once she checked she only said, "they're the same" and dismissed me.

As I walked to check out desk, I realized I had no idea what she meant by that. Did she mean my pupils were still the same size as previously observed, or did she mean they were the same as each other?

So, I've got another six months to wonder what Dr. L meant by "Parkinson's [something]" and to be staring at my own eyes in the mirror.

Sixth Nerve Palsy, REDUX

Post 76

Baron Grim

Heh... I should have followed up on this sooner.

The "Parkinson's something" was Parkinson's SIGN, a specific symptom of a contracted pupil and a sagging eyelid. It has absolutely nothing to do with Parkinson's syndrome. There are a couple of medical terms named after folks named Parkinson.

A week ago I found out more about this.

For months, maybe even a year, I've had frequent headaches. They haven't been as bad as the ones that I had before my surgery so long ago, and they're not in the same location, so I wasn't too worried, but still concerned.

So I had an MRI at the end of February. I didn't hear any response from either my GP or my Neuro-ophthalmologist, so I assumed they saw no significant changes in my MRI.

No, they just hadn't received the results of the scans. After some running around, making copies of MRIs on DVD-ROM, posting them, finding out I botched the copies, recopying and reposting them, etc. I found out there was changes in the MRI. The tumor has enlarged a bit into my Cavernous Sinus. Dr. L wasn't at all surprised. This is what's causing the Parkinson's sign he mentioned earlier. They just couldn't see it on the previous MRIs but he suspected it was there. He also called it Horner's syndrome, so I'll look more into that.

He gave me three options.
1.) I can do nothing.
2.) I can do radiation.
3.) I can also have strabismus surgery which will lock my right eye in a forward position, but otherwise I'd still have double vision in any other direction. It would do nothing about the headaches.

He seems to recommend option 1.), I mostly agree, but I'll consider the other options, especially if the headaches get worse, which I expect they will. Troubling was the type of radiation he mentioned, wasn't proton radiation. I don't think I trust any other. I wonder if he didn't recommend proton therapy because that's done through another hospital system? I'll ask when I eventually talk to radiation and surgical consults.

"Brain cloud! I knew it, well, I didn't know it, but I knew it." - Joe Banks.

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