Vision Loss Redux Part XVI - Encouraging (non) Developments

To my many legions of fans...I apologize that I have been remiss in keeping you up to speed on my very queer (I've been reading Chronicles of Narnia to my daughter, so I'm starting to say and think words and phrases such as "queer" and "I say!" and "You're being a perfect ass!") situation.

Think the narrator from "LOST"...Last time, on Vision Loss...

Kate: Will our insurance cover the IV/ig treatments you're getting...TOMORROW MORNING?
Dan (With the "I'm going to cry" look that Jack gets in every other scene): You know, you're right, the doc mentioned "pharmacy" when she said about the treatments...well, I'll just have to find out before we start tomorrow.
Kate: Did you know that I read on the internet that these treatments cost between $10 - 15 THOUSAND?
Dan (with a tear welling up in his eye and a hollow feeling in his stomach): I was not aware of that...

In the hospital the next morning, after making several phone calls, the case worker for the hospital came in and assured me that everything would be taken care of...phew! I would have had to break open the blue piggy bank I've owned since I was about 8 years old to pay for that one!

Here come the mother hens...I mean nurses! Talk about intense...this is a new procedure for all of them, so they're reading the manual (which always engenders confidence) and checking my blood pressure every 10 minutes, jamming a thermometer in my (praise God for advanced technology...if you know what I mean...) ear every 15 minutes and asking me constantly if I was alright...apparently people can stop breathing due to the certain side effects of this treatment...

No side effects...I didn't even get the predicted drowsiness...just read my books, happy as a clam, except for a needle in my hand and having to take Edgar the IV with me every time I need to visit the gentleman's room.

The next day was a bit different...see, I was still taking narcotics at this point to sleep...interestingly, the same ones Jack got a doctor friend of his to prescribe for him near the end of season 3 (in case you're wondering, when I took the "What LOST character are you?" quiz, I was...never mind...it's not Jack).

So, for some reason, I told the nurse that I didn't need my narcotics, at least when she was making her rounds. Closer to sleepy-time, I asked the nurse on duty to retrieve my sleeping pills so that I could get a good night's rest, to which she promptly replied that she would and promptly never returned.

Thankfully, I had pills with me in my bag...but I had waited too long. See, these pills don't do a good job of putting you to sleep, they just keep you asleep once you're there. Well, waiting too long to go to sleep in the hospital is bad because you get hungry, and once you get hungry, sleep is but a distant pipe dream...

After much consternation and pounding my peanut jar and another dose of narcotics...I fell into a fitful sleep...for about a half-hour...then...the most reviled of all humans enters my room...the most despised and loathed of all creatures that walk this ball of dust...the happy, chatty nighttime nurse.

In my half-drugged state, she was asking me about my family, about the picture my daughter drew for me, about who knows what...and she wouldn't let me ignore her...I couldn't have been more dismayed if she had flipped on an Olbermann rant (I exaggerate)...I was hungry again...but I was drugged up enough that I slept in a semi-comatose state for a couple more hours after the Spanish Inquisition left (if only she had used the "comfy chair") until the second round of treatments.

This day was not as merry as the first due to my lack of respite the night before.

More later...must get my respite for the new week ahead...

Vision Loss Redux Part XV - Diagnosis

Quick Summary: Pressures are down in my eye, I have Susac's.

Soup to Nuts (just heard this cliche for the first time, and have been waiting to use it):

Concerning the pressures in my right eye, they were down to 8. I don't know what accounts for these wild fluctuations and Wiz #1 doesn't seem to know either...probably the pred.

My visit to DC was sort of as expected and hoped for...

Wiz #2, who looks a lot like a good friend of mine from years past, sat down with us and distilled a lot of experience and work into a 5 minute briefing.

They didn't find anything in my MRI or other studies that I had done. He said that he had a whole room of doctors looking at the recordings of my innards because they heard I was a possible Susac patient.

The MRI showed some possibility of something, but it was a "might be, might not be" sort of thing. However, Susac's has been diagnosed without the encephalopic episodes that one hears about.

So, I am indeed one in 20 million, or at least will be treated as if I am.

I will undergo a series of IVIG treatments that may or may not work. The goal is to stabilize me so that, according to the doctor, I can get on with my life.

Thankfully, the doctor I see here was one of his students and I have confidence in her. So, I will be undergoing treatments much closer to home in Allentown.

After 3 years, it's good to at least have a plan of attack.

Vision Loss Redux Part XIV - Fateful Week

Visited Wizard #1 on Friday...nothing exciting to report except there are two additional spots in my right eye and the pressure in that eye is double what it ought to be. However, after the flourascein test, there is no activity, so I reduced the pred from 60 p/day to 40 p/day...which makes me edgy and not a lot of fun to live with...though my wife would never say that I'm sure!

SO, back tomorrow to check the pressures. If they remain above 30, then I will have to go to Philly to a glaucoma specialist for possible laser treatment. I didn't know this previously, but the definition of glaucoma is having pressures in your eye above 20. High pressure damages the optic nerve, and without treatment, blindness ensues. My pressures have been playing in the 30s and were over 40 on Friday. He sees some damage, but is confident that if we can get this under control, because I am young, it will heal with not problem.

All this because of that darn cortizone shot!

On Wednesday, we head back to Wiz #2 at Georgetown U. Hospital to get the verdict on whether on not he believes I have Susac's Syndrome. I haven't heard anything from him, so I anticipate an interesting visit. It seems to me that some major treatment decisions will need to be made soon.

Vision Loss Redux Part XIII - Susac's or Not?

Visit to Dr. Brown (Wizard #1) on Monday

The vision loss mentioned in my last post was actually not vision loss at all, but happily was merely a pool of blood in my eye. So, nothing substantial has changed with my vision.

Visit to Dr. Cupps (Wizard #2) on Wednesday
Traveling to DC in record time -- (made it from Leesport to the Capital Beltway in 2.5 hours) we wended our way down Connecticut Ave to Georgetown U hospital to see the newest wizard. Using the superb navigation skills of my wife, we cruised right into the proper parking area, right next to the proper building, went up the proper elevator to the proper floor and immediately into the proper office.

Got to hear DC slang--if you've not heard it you don't know how to say it--but the secretary said about a particular desk utensil, "I heard that joint rattling in there." I haven't heard the proper slang pronunciation or usage of "joint" for 3 years!

Anyway, a nice woman input all my medical information, which took awhile...

"What medicines are you taking?"
"How much time do you have?"
"This is a new computer system...so bear with me..."
"I'm on 80 mg of prednisone"
"...ok...click here...and, no, wait...oh, I have to go back...now...ok, here it is...so, ok...you're on what now?"
"prednisone"
"ok...pred...ah! there it is...now, how much?
"80 mg"

...and so it went for all 6 of my meds. But she was very nice and told me that her kids had attended Clinton Christian (a neighbor school to my former school) before moving to Springfield.

Then I met Dr. Cupps and was immediately place in a slightly warm room with a med student...a very nice med student, but a med student nonetheless. So, we went over my long and sordid medical history, reviewing my progressive deficiencies starting with almost exactly three years ago...the day I packed up the U-Haul to move to PA, my ears started buzzing.

I had brought all of my records to give to the wizard for his inspection. After a thorough examination, the wizard entered and we had a good conversation about a lot of things. I appreciate when a new wizard asks me questions I haven't been asked before...like, did you ever go to the chiropractor or have a neck injury? Funny I was never asked that when it was assumed I had coratid dissections.

He did indicate I have an abnormality on my latest MRI, so he's going to sit down with experts and go over all my tests.

Also, he has treated 2 Susac's patients in the past and has had success with them.

I go back in about 3.5 weeks, and if it is determined that I do indeed have Susac's Syndrome, he would like to me start Intravenous Immunoglobin to try to stabilize me. It is said that Susac's lasts for 3-5 years, then typically goes away. Well, I'm at three and it's still going strong!

Vision Loss Redux Part XII

After a hiatus, my left eye has decided to get back into the act. I noticed tonight that my left eye has displayed a shadow...so it's back to 80 mg of pred for me for now. I've noticed a lot of shadows in my right eye...

God only knows what's causing this, and it's been difficult to keep my mind straight about this with my mind toggling between refusing to acknowledge this and wanting to learn braille.

God is good...all the time.

Vision Loss Redux Part X I - update

"looking good!", the wizard says to me today. Things seem to have stabilized for the last several weeks. So, tomorrow I move down to 30 mg of prednisone. Still a very high dosage, but half of where I've been. This is the lowest I've been since this whole mess started. Every time I would move to 40, I would have flareups...so this is pretty significant. It probably has much to do with the other meds he put me on. To his knowledge, this med - cellcept - has never been used for eyes...but I guess I'm a pretty rare case.

He's convinced again that I have Susac's. He's going to call Dr. Susac and get the scoop.

Also, I'm seeing a rheumatologist that is sending me down the Georgetown U to her mentor. We'll see if he can shed some light on the mystery patient.

Also, she's the one that started me on this diet. Basically, the prednisone is beginning to give me diabetes and I need to watch what I eat. She said I didn't have to be strict with it...but I decided...why not? I was overweight before I started on the pred, and added 20 lbs. after. So, I'll be eating no carbs for the next two weeks during phase 1 of the South Beach diet.

I've never done this before, so I see it as an exercise in self-discipline. I will let you know if I cheat, honest! I'll twitter about my progress, and you can follow if you're some sort of diet voyeur, or if you're just interested. This could be fun...a new challenge!

Although...I missed dinner tonight because I worked late and had a meeting...and I'm feeling a little hungry...

16 Vials of Blood

Yes...you read that right, I gave 16 vials of blood today so my new rheumatologist could get a good read on what is going on.

Of course, I had forgotten that I was supposed to be fasting...so I did my morning routine...placed the bowl on the table with the silverware, cereal box, orange juice...began doling out my meds...then the thought hit me...no!!!

I had also eaten at 3 am, which would place me at about 1 pm at the earliest to get my blood drawn...thankfully, I was busy today and didn't have much time to think about my gradually weakening state...until I got to the clinic and she started pulling out handfuls of empty, greedy vials...

So...holes in both arms and a package of teddy grahams later, I walked out with loads of sympathy from the ladies.

Dr. Brown tomorrow...we'll see if I can reduce my prednisone dosage...

Doctor's Vists - the comedy of it all...

Doctor's Visit #1 - two weeks ago sometime...

Scenario - Kate and I enter the empty office of a rheumatologist, are admitted without incident and a very nice man takes us into his office and interviews me concerning my condition, etc.

He takes me through a thorough exam, says there's nothing obviously wrong with me, then begins to record into his digital voice recorder my history...

Dr: "He (referring to me) first experienced vision loss last year...[continues speaking]. Presses stop.
Me: Actually, I first started losing sight fall of '05. [repeats what I told him during the interview]
Dr. [rewinds the tape] begins again...as he's speaking he says, "he was on coumadin for a period of three months...
Me: No, I was on coumadin for a year with no incident, then came off in August of '07, then three months later had an incident, then was put back on at that time while I was in the hospital. Came off the coumadin about 4 weeks ago, had another incident 2 weeks ago, then was put back on...
Dr: [with a somewhat glazed look in his eyes] So, you were on coumadin with no incident for a year?
Me: Yes
Dr: [rewind]

This went on for some time as he, Kate and I reviewed the details that we had told him during the initial interview.

Long and short of it...very nice man, very not helpful. The most he did was recommend that I take an additional medication that I have no intention of taking.

Dr. Visit #2 - last week
Kate and I enter a completely empty office in the basement of a large house with very bright and attempted kid-friendly furniture. The pictures on the wall displayed a decidely odd taste and many of the messages on the wall were written in poem form that I assume were written by the man himself as they made you feel bad for the author who is so proudly displaying his sense of humor. Reminded me of the socially awkward high school kid that cracks jokes and thinks that people are laughing at his jokes.

We were ushered into a labyrinthine corridor and stationed in a small, windowless room with the typical 80's tripe being piped in through an unseen speaker. Claustrophobia begins to set in...

After a short time, a typical, doctor-looking person enters the room.

I will not write out the conversation as I will just try to capture the arrogance that he carried with him as best I can...just think of that same kid who nobody likes, but thinks they do, mocking you because you don't have any friends. You're not sure whether to punch him in the nose or just feel sorry for him.

So, in the course of the conversation, he belittled (some in a kind, doctorly sort of way, but most in a disgusted, "they are most definitely morons" sort of way), me, my wife, my wife's friend, Lyme disease doctors, any allergist that would consider that diet would have anything to do with inflammation, hollywood actors that have famously tried wacky alternative medicine, my doctor and one of his patients who thought that maybe her daughter had allergies. I may have missed one or two...

After a bit, I found myself nodding and agreeing with everything he said just to get him to stop talking...

Upon reflection, we should have just got up and left, but of course, I'm much more pro-active in my "should've" life than in my "in-the-moment" life.

By the way, you should meet me in my should've life! I am so witty and good at kung-fu!

Oh, and in the middle of all this he says..."we can do an allergy test if you want...but it would just confuse the situation." The conversation was also sprinkled in with gems of advice like, "you really need to be careful what you read on the internet" [Oh, thank you, font of wisdom, for I am a poor, lowly sap that doesn't know the difference between reliable and unreliable websites, as you surely must!] and "I don't know really what to recommend except to get another doctor".

So, we left the office after having wasted $40 and a couple hours. But, at least I got a blog post out of it!

Johns Hopkins no more

I was planning on going to Johns Hopkins..had an appointment scheduled and everything...but they don't accept my insurance, not even with a preauthorization. "That's curious", I thought, "why would a hospital not accept insurance payments, even when the insurance would gladly allow me to go out of network?"

"They either don't pay, or the process is so torturous that they don't want to be bothered with it...but more likely the former", I replied to me.

So, what to do? I'm getting advice from a doc and beginning to pursue something that neither of us are sure will go anywhere, but at least it's something. I'll let you know if it works.

Interesting article in WSJ today on health insurance as the middleman hiking prices. The comments on this related blog post are very good and insightful, especially for one newly coming to the realization of the fiasco that health insurance has become.

Vision Loss Redux Part X

Rheumatologist. I never knew what that meant or what they did and I found out today...not much...at least in my case. I went with some expectation of getting some answers but was sorely disappointed. But, it brings another professional in on my case...so it's another perspective, so I suppose that's a good thing.

He's not convinced of the efficacy of the steroids, and frankly, neither am I. It's effectiveness really seems to have worn off, and I keep accumulating poundage.

It's one of those deals where I look in the mirror in the morning...and go to call the cops...then I notice the cleft in the guy's chin and realize that I am one of the only people I know with two pair of buttocks!

Vision Loss Redux - Part IX

Long time, no write...I suppose life has been catching up to me as I adjust to the prednisone and realize that 4 hours of sleep per night just aint cutting it...

I do apologize to my loyal readers for my dereliction of duty in reporting my ongoing condition.

So, here goes...

Several weeks ago, I had changes in hearing, with the constant ringing in my right ear compounding on a lower, conversation level tone. So, now when talking to someone where there is ambient noise...fuggetaboutit. The hair dryer, students walking through the hallways, talking after church...I have to really pay attention.

Then I experienced more inflammation during my two-week visits...we followed the routine, upped the prednisone dosage and tried to quell those fires...

The doc decided to take me off of the blood thinner because there is no research indicating that it would have anything to do with inflammation...and no one knows what long-term affects could be.

I was quite pleased to take off the medication bracelet...

Subsequent visits showed that the prednisone was not having the desired affect when indications of inflammation would show up...so, last Monday I received a cortisone injection in my right eye...I went back for follow ups and things seemed to be fine.

Easter Break comes and on Thursday, mid-morning, I noticed a significant portion of my vision in my right eye was just gone...more like an opaque cloud had moved into my center vision. I thought maybe it was the cortisone moving around my eye, because I had been told that it is long-lasting and stays in the eye for some time.

This was not the case, however, due to some significant blockages in my vessels. Needless to say, it was very frustrating to not be able to see the basketball scores!

So, now I'm on quite a regimen of meds (the bracelet is back on)...enough to skip a meal, except the prednisone would remind me quite quickly that it was time to eat!

I'm heading down to Johns Hopkins in April and to Thomas Jefferson as soon as I can get an appointment scheduled.

Thanks for all your prayers and concerns as we forge ahead, pray for healing and do everything in our power to get to the bottom of this before I lose my sight and/or hearing.

No matter what the outcome, God is good.

Vision Loss Redux Part VIII - Contained

Bi-weekly visit to the wizard revealed through the magic of fluorascein that there was no inflammation in any of my blood vessels...

Brief Recap:

1:30p -- Arrival in good spirits. This time prepared with reading material, already consumed lunch (specially designed to satisfy for hours) and referral. Check in. Have a seat.

2:00p -- Called back for the traditional drip torture, otherwise known as pupil dilation. Return from that room a little weepy, but otherwise held strong. Engaged in reading until 3:30p.

4:00p -- Technician complaining loudly and purposefully that the Wizard wanted her to perform a test this late in the day. For my part, I don't care about her conducting the test at the end of the day, because she will not be the one sticking sharp objects into my flesh. Am beginning to think that the other office might be better even though it's further...

4:15p -- I realize why I should be concerned about her conducting the test in a belligerent mood as she holds my eye open with her fingers and holds it there while carrying on a "disgusted with the Wizard" conversation with other nurses. As my eye starts to mummify, she randomly scourges my dilated pupil with blinding flashes of light, then tells me look "look left" and repeats the process over and over and over...all this with a knife jammed into my arm...but I still hold strong and refuse to tell my secrets...

4:30p -- Wizard comes and and analyzes the pictures after much ado (due to the belligerent one's inability to master a new software upgrade). Good news! No inflammation at all in any of the pictures! Scale back the prednisone. Call if any changes occur. See you in two weeks.

5:00 -- Close up the shop again...walk with the receptionist (Rose) out to her car...talk about the catch-22 we are in...symptoms have dissipated due to the prednisone, so we reduce the dosage because long-term prednisone usage is not good, but the prednisone is what is keeping this from happening. And we don't know the cause...so, one day at a time...more doctor visits in the upcoming weeks.

Vision Loss Redux Part VII - Containment

Two weeks out after my last episode, Kate and I visited traveled to see the Wizard again. Kate and I spent some quality time together in the waiting room...6 hours of it, to be exact.

Here are those six hours in a nutshell:

Dan to Kate: Boy, that drive is not bad at all! 45 minutes straight shot...and we're here early!
Dan to Receptionist/Nurse: Here is my insurance card...same company...different number since I got kicked off the group plan.
Dan to Receptionist/Nurse: I was just here 2 weeks ago, my referral should still be good!
Dan with phone in hand, talking to primary care physician office: ...and when can I expect the referral to be sent?...by 3? (glancing at the clock, taking note that it is 11:30). Do you understand that I am in the office right now? Yes, I understand, but I'm here now...Yes, ok, thank you for describing the piles of paper on your desk, and (not wanting to reduce his chances of having it completed today) I appreciate you doing this at all. Thanks...
Dan to Receptionist/Nurse: Reschedule? I do not know what is wrong with me and I am losing my vision. I am not rescheduling.
Dan to Receptionist/Nurse: It will cost how much if the referral doesn't come through? hmmm...that referral will come through, I'm sure of it.
After waiting for 1 1/2 hours, Dan to Receptionist/Nurse: (with relief) Thank you for giving me a copy of the referral.
Kate to Dan: It's 2:00 and we haven't eaten anything since breakfast, would you like me to go find some food?
Dan to Kate: Yes! That's a great id...[Nurse to waiting area - Daniel Tubbs?]...ea. Oh well...
Technician to Dan (after test): Hmmmmm
Dan to Technician: Hmmmmm?
Technician to Dan: Well, the inflamed areas from 2 weeks ago are gone, so that's good.
Dan to Technician: I see other areas...
Technician to Dan: Yes, these areas area all inflamed--they're in your extreme peripheral, so you can't see them.
Wizard to Dan (after a longish conversation): It's more positive than negative.
Wizard to Dan (after realizing some information is missing): Nurse, will you have the other office fax his records?
Wizard to nurse (after about 30 minutes - holding up a six page fax): Is this everything?
Nurse to Wizard: Oh, you wanted everything?
Wizard to Dan (after an additional hour): (with disgust) So, did they finally get records?
Wizard to Dan (about 6 pm): We'll keep you on your current dose of prednisone, and I want to you get these 45,000 other tests done. We're going to bring in other doctors to look at things. Call me on my cell if anything changes. See you in two weeks.

Lessons to Learn

In talking to my students, I consistently stress to them the importance of taking every day as a preparation for that moment where God will open up opportunity. In some metaphysical way, our habits shape our souls. The daily grind of performing duties slowly produces virtue, if performed with intention.

I can practically guarantee that, at some point, you will have opportunity to lead. If you have wasted the days of drudgery in mindless repetition and begrudging melancholy, you will not be ready. However, if you are alert and look for areas of growth and learning amidst toil, you will find that when opportunity arises, you WILL be ready. Others will look at you and say, "I never knew he had it in him!"

Look, Moses was 80 years old when God began to use him. Some would argue that he still wasn't ready because God fetched Aaron into the wilderness to accompany him to Egypt.

All that to say, Kate and I have been thoroughly disabused of the arrogant notion that we are in control. We would never have planned this, however, we are being prepared for an opportunity that we would never have otherwise encountered, and we are attempting to stay alert and ready to learn this day's lesson.

In a purely physical sense, this days' lesson was that prednisone will keep you up all night if you're not careful!

Vision Loss Redux Part VI - The Dream

So there I was, sitting in the doctor's chair in a little examination room. He had what amounted to a Styrofoam coffee cup with the bottom punched out over my left eye, while checking my intraocular pressure with a Q-Tip. It didn't hurt because he had numbed my eye, but he just kept poking and poking and poking. It was starting to hurt and I was getting annoyed...then I woke up. It was Friday morning.

What a way to start the day! I don't typically remember much detail from my dreams (unlike my wife who can tell you the 5 W's of every dream--and it's usually relational stuff...the kind of stuff that would bore me into an even deeper sleep and give me night terrors). However, this one stuck with me for obvious reasons.

On the way to work...more loss...in my left eye...sorta creepy, with the dream and all. I waited to make sure, then called the Wizard of Wills. Providentially, he was in the office closest to where we live (where he works once every two weeks) and we were able to get in the same day, after some health insurance wrangling.

After a flourascein test, he identified the area of vision loss and, disconcertingly, identified three other areas where leakage was occurring. Click here for an informative video on the procedure. He was "concerned" by this development and wanted to address this right away. I will be calling him first thing Monday morning as well and anticipate reporting that there were no new occurrences.

So, now I'm on a Barry Bonds-level dosage of steroids...I'm using them for the anti-inflammatory effects...honest! I wonder if I will grow 2 hat sizes? The idea is that the prednisone will combat the inflammation of the blood vessels in my eye. We still don't know the cause, but this is the best way to combat the effects.

The cause is not what was assumed before, but he blames Susac's for the closing of the blood vessel.

I left the office with so many prescriptions stuffed in my pockets, I felt like Sandy Berger, although, even though I feel sure my and his documents are equally innocent, I didn't feel the need to stuff them under a trailer.

The saga continues...

Vision Loss Redux Part V

Well, if you made it all the way through my Dr. Seuss impression, you already know that I have been "diagnosed" with Susac's syndrome.

I put this term in quotes because I have become acutely aware of the game of 20 questions that is medicine. Once you get to the end of the checklist of symptom/disease correlation, the doctor looks at you with a blank and (if he's good) frustrated expression and says, "I don't know."

Thankfully, Dr. Singh is one of those sincere, resilient doctors who did not just ship me off when I took up too much of his time. But he too is at the end of his expertise.

So, I trot down the yellow brick road to another obviously very intelligent wizard at Wills Eye. Wisely looking at my whole range of symptoms that started the day I moved to PA (I am firmly refusing to see causation instead of mere correlation), he believes that I have this extremely rare syndrome. If the diagnosis is correct, and my amazing mathematical skills haven't failed me, the chances that I have this are 1 in 20 million or so...mom always said I was special!

What's next? I figured you'd ask that. I'm planning on sending my records to another doctor for another look. I think I've undergone most every test there is to take for the head, so it'll just be attempting to gain access to another doctor's experiences and sleuthing capabilities, and seeking ways to avoid ingesting rat poison for the rest of my life.

The latest...(with apologies to Theodore Geisel)

You're unique, original, wonderful, strange!
We've done every test and poked every veinge,

We've questioned and searched,
And we've poked and we've prodded,
We've looked at your heart, your head and carotid!

Why are you here? You're making me crazy!
I'm not stupid or dumb or extrem-ely lazy!

I can't figure it out, each test comes back clean,
You are too young, you know what I mean?

Who do I talk to, where do I look?
I look in the book...I look and I look,
but I still cannot pinpoint the gook in your nook.

We have stacks and stacks of schnacks and scracks,
We've looked in the cracks on the backs of the Gracks,
I've never seen this, no never no never!
Why did you do this...so you can seem clever?

I'm sorry...so sorry, I take it all backs,
I'm reading your chart and see what it lacks,
An impossible, improbable, last diagnosis
As I'm looking down over my wizened proboscis,

You must take an MRI to determine the facts,
But it might be, it could be ... the syndrome Susac's.

As an aside, contrary to what you might think by reading my posts, I have not presented in any of the encephalopic symptoms except for headaches. From the link above:

Some of [the patients diagnosed with Susac's] have had tinnitus, vertigo and hearing loss but no neurological involvement.

What I've learned so far...

My experience since I've moved to PA has been one of learning. Every experience has something to teach, and one ought to be vigilant and intentional to learn the lessons. This past week has brought a lot of good words of advice from friends that understand this. Many of you sent offerings of help, prayers and focused attention. I am grateful.

Here is a sampling, that you may be edified along with me:

• God is good all the time and all the time God is good. My Grandpa used to say that at the start of every service he would say "God is good" and the good old pentecostals would reply "all the time" :)
• I would invite you to pray, offering up all these painful things to the crucified Christ, Whose own sufferings for our sins cannot be repaid at any price. In this way you associate yourself closely with Him and participate in your own way in His Passion. So too it is possible to grasp the full meaning of personal suffering from the Fall to the supreme act of Christ’s redemption.
• God is good, and there are no accidents. "I will lie down and sleep in peace, for you alone, O LORD, make me dwell in safety" (Psalm 4:8).
• With as many times as God (through Paul) repeats, "Grace and peace to you," He must really mean it.
• I am thinking of Jehosophat standing in front of that vast army and saying to God..."we don't know what to do" and God answered him Trust Me, this battle is not yours but Mine.

Home

Doc came in at 1:30 this afternoon, said my INR levels are therapeutic (I have enough rat poison in my veins to thin the blood, but not too much), and said I was going home today.

My wife came and picked me up, and I hightailed it out of there. It is a very nice hospital...but not a place I want to spend one second more than I have to...

Has anything been resolved? No. We are back where we started. We are going to pursue this until we identify the cause, starting with Wills Eye and Penn for hematology. I am going to do what I can to avoid a life sentence of taking rat poison.

Thank you all for your thoughts and prayers. God is sovereign and good. I pray that He used this week to continue the process of sanctification in all our lives since you have intertwined your life with mine in prayer.

Test Results

MRA - Normal
Angiogram - possible dissection in left carotid artery
CT Scan - Normal
Echocardiogram - Normal
Transesophageal Echocardiogram - Normal
Blood Work from here to Djibouti - Normal
Blood work for a genetic hypercoagulative blood disorder - Not yet complete

One might deduce from the results of these tests that I am mostly normal...I suppose that is up for debate.

Dr. Singh is incredibly humble and resolute. He is determined to find the cause of my vision loss. He submitted the photos from the angio to several other doctors, and all have deduced that the perceived dissection on the picture is either not a dissection, or if it is, is not large enough to do what has been happening to my eyes. Either way, they would not recommend surgery. As you can imagine, this is a great relief as I don't think I'd enjoy people tinkering around inside my head.

Oh, hello Square 1, how are you? We've got to stop meeting like this!

Tomorrow we are going to arrange to visit a doctor at Wills Eye to rule out what might be happening as originating in and around the eye. Dr. Singh said that it is very strange that each event (I've had a total of 5 retinal occlusions) has presented in the eye. He can come up with no explanation, but will be working with me to ensure that I get to see who I need to see.

After that, it's off to U of Penn to see a hematologist. At each stop, I'm going to pick up a friend and we're all going to head off to the city where I hear there's a wizard who can do anything (except pronounce the word "audience")!