Tuesday, December 4, 2018

Mudville


There is a famous poem written by Ernest Lawrence Thayer called “Casey at the Bat”. It is a poem about baseball and how the hopes of one team rested on the shoulders of one man, the mighty Casey.

Here is the last paragraph of that poem:
“Oh, somewhere in the favored land the sun is shining bright, the band is playing somewhere, and somewhere hearts are light;
And somewhere men are laughing, and somewhere children shout, but there is no joy in Mudville – mighty Casey has struck out.”

Well, my Mudville was at the Mayo Clinic and my mighty Casey was my Surgeon Dr. Holmes. A surgeon who specializes in double vision and who has been known to be able to pull off miracles. My hopes for single vision rested with him.
However yesterday he informed me of the following:
“We can’t fix your eye. The technology necessary to do it does not exist at this time.”
And with that statement my quest to be able to use my right eye once again ended with a thud.


In the end there was just too much damage done to the eye socket. In most cases double vision is either horizontal, vertical or a little of both. With surgery and/or corrective lenses they have an excellent chance of getting you back to single vision.
In my situation not only do I have both the horizontal and vertical issue, my eye is not sitting level. Due to this the image I see leans to the right and the degree that it leans to the right makes correcting it, at this time, improbable at best. Then there is an issue with scar tissue that has formed behind my eye. It is restricting my eye movement. This is where the missing technology comes into play. Today, they have no way of fixing this issue. They have tried to cut away the scar tissue with each surgery, but it always returns. It keeps my eye from moving naturally when I move my head up or down or side to side.
So what's next?
I will continue to do my physical therapy through the end of the year. After the first of the year we head back down to Mayo to see if my double vision has improved. We are not holding out hope for this, but they want to look at it one more time before moving forward.
Once they have ruled out any future procedures, then they are going to fit me for a special set of glasses. These will have a lens in the right eye that people will be able to see through when looking at me, but I will not be able to see out of. I will then rotate between the glasses and an eye patch depending on what I am doing or how I am feeling.
My life with monocular vision will officially start then.


How am I doing with all of this you may wonder? I am numb. I am disappointed. I am angry. This is not how I wanted this medical misadventure to end. Yes, I have always know that there was a really good chance that I would never regain the use of my right eye. It is just that I have had so many surgeries on this eye that I always expected that someway, somehow, I would get back to single vision.
Now that’s not gonna happen.
The mighty Casey has struck out.


Don't your feet get cold in the wintertime
The sky won't snow and the sun won't shine
It's hard to tell the night time from the day

You're losin' all your highs and lows
Ain't it funny how the feelin' goes away..

(Desperado  The Eagles)

Tuesday, November 6, 2018

It All Started With "This Is Not Good"

The Mayo Clinic.
One of the finest medical facilities in the world.
It has treated Kings, Presidents and celebrities galore. It is known around the world as the place to go when you truly need to get something fixed. It is a well oil machine that runs like clockwork and the staff is committed to turning the impossible into everyday occurrences.
So what happens when the wheels come off?
What happens when they everyday goes south?
At what point do you start to get worried.
At what point does the Mayo Clinic start to get worried?
Well...
It wasn't so much the phrase that was issued "This is not good".
It wasn't so much that that particular phrase was said four different times over two different visits.
It wasn't even that it was said by four of the top optical surgeons the Mayo Clinic has to offer.
It was the phrase that followed that sent everything into a tailspin personally and the Mayo Clinic medically.
That phrase was:
"He's not going to make it until then".
It was said at least six times during this period, but I have become numb to the phrase and don't know what to think and am just going with the flow.
First off, let me say that my life is not in jeopardy. It is not or has ever been in jeopardy with the care that I have received and I continue to receive at Mayo.
The issue is that I am once again at risk of losing my right eye,

So what is happening?
For a year or so now I have known that my right side lower eye lid has been rolling in. I have had more than a few surgeries to try to fix it. No matter how many times we have rolled the eyelid out, it rolls itself back in. This all has to do with the fact that my eyeball is not in the same place; it is lower and set back from where it was originally. This causes a gap between the lid and the surface of the eye which allows the eyelid to roll in. The plan was we would fix this once all the other surgeries were done.
Now on the outside of your eye is a outer lens of some sort that protects the main area of your eye.
My rolled in eyelid and eyelashes are rubbing against that lens and wearing it away. In my case it is on the very lower section of the white section of my right eye, If that area opens up, or that lens gets worn away, well then it is game over for the eye. I lose my right eye.
That is where I am at.
So I have run out of time. The outer lens has gotten so thin that they do not believe that it will last until my scheduled surgery on November 14th.

What do we do?
Emergency surgery will be performed on the eye tomorrow at 1PM the Mayo Clinic. They have pulled together a team of surgeons that they feel can pull this off. The goal will be to reconstruct the eyelid by taking tissue from the inside of my mouth to re-build the eyelid. Once done it should protect the lens, but I need to get to that point.

That is what tomorrow is all about.
I just wanted to let folks know...
Talk to you on the flip side.
Roger

Does anybody really know what time it is (I don't)
Does anybody really care (care about time)
If so I can't imagine why (no, no)
We've all got time enough to cry
(Does anyone really know what time it is   Chicago)











Sunday, October 14, 2018

Surgery Update. Nine out of ten patients surveyed.

You've seen the commercials, nine out of ten doctors surveyed....
 Well here is my experience.
"I will tell you that over 90 percent of the people who have this surgery are disappointed with the initial results".
Dr Holmes actually said that.
Before I had the surgery.
What the hell happened to the miracle man? Where did he go I want that guy doing the surgery!
He went on to explain that as patients we tend to assume that surgery fixes everything. You go in, go to sleep and when you wake up everything is better. In many many cases that is simply not realistic but as patients we tend to expect that. Such would be the case with my surgery.


So I had the surgery this past Tuesday. The surgery took a little over three hours and according to Dr. Holmes went wonderful. They ended up doing surgery on both eyes and when I awoke I was still seeing double. Disappointed? Yep, big time.


They had attached surgical thread to the muscles of both eyes and then started pulling on them to align the eyes. All I can say about that experience was that it hurt like hell even with numbing drops. Once the eyes were adjusted they had Edie in a chair across the room and I was to focus on her. Was there any part of her face that I could see singular vision of. There was. Her nose. Everyone in the room got excited except me.
Seriously was that as good as it gets?
He then holds up a Dilly Bar stick (tongue depressor) with letters written on it. The biggest letter was an "E". "Tell me if there is a place where you only see one E?"  There was at just over three feet away. Again all the folks in the room got excited. Me, not so much.


Seriously? After three some hours of surgery I was seeing single vision in a space no bigger than a quarter. I can understand why most people are disappointed after surgery.
I am now almost a week out of surgery and the quarter vision only is only slightly bigger. It could take eight weeks for this to get better. I am not impressed.
I put in the drops, hourly. I do the exercises four times a day and in the end the headaches are  intense. However everyone says DR. Holmes is a miracle man.....
So let's look at the positives.
I no longer wear a patch. My eyes are not level so I look like a Picasso painting, but the pirate look is gone.
I can see out of my right eye. Instead of being high and wide to the left with a tilt. it is now side by side with a little tilt. DR. Holmes feels my "mind" will fix the tilt. I feel I might have killed that fix with the alcohol I drink (just kidding, but really turn one eye ten degrees to the left?).
I get to drive and go back to work on Wednesday.
I have a follow up appointment with Mayo on the 22nd.
I am hoping that things change between now and then: the 22nd.


Turn around, Every now and then I get a little bit tired of listenin to the sound of my tears
Turn around, Every now and then I get a little bit nervous that the best of all the years have gone by
Turn around, Every now and then I get a little bit terrified and then I see the look in your eyes
(Total Eclipse of the Heart  Bonnie Tylor)


Friday, September 28, 2018

One Last Chance.. A Surgery Update


Sorry about the back to back posts, but I wanted to give you an idea of what the world looks like with double vision. I also wanted to give a quick update on what is going on and I didn't want to try to do that in one post.
So how is it going you ask?
Well the good news is that I still have a chance. It's a pretty slim chance at best, but there is a chance. If I want to get back to singular vision then I am pretty much gonna need a miracle. Working in my favor though is that I will be in the hands of a gifted Mayo Clinic surgeon who, everyone I talk to believes, can work miracles. Lets hope he has one more left.
So where did the wheels come of this time? I was at the Mayo Clinic meeting with the orbital surgery and plastic surgery teams when I heard that damn sentence again.
"I am sorry Mr. Engnell but there is nothing we can do to fix your eye".
The concern is where the eye is located and the amount of work that would need to be done. In their words, they have a better chance of leaving me blind in that eye then they do fixing it the location of the eye. I have now heard this from North Memorial, the University of Minnesota and now the Mayo Clinic. So there will be no more surgeries on the orbital bone and the placement of my eye. It is where it is and we will go forward with what we have.
So what does this mean?
Since my eyes can not be aligned the chances of having a single field of vision are pretty much gone. Yet they all say if anyone can pull it off it would be this one surgeon at the Mayo Clinic. He will need to catch some luck but he has done it before. The risk here is that we are probably only going to get one shot at it. So the surgeon will do his best, but close might be the best that we can hope for.
If he can't get me to single vison but can get it close, then he feels that they can create a set of glasses that can correct the double vision. We wont know anything for sure until I am in the operating room. Again, close might be the best that I can hope for.


The surgery is set for October 9th.
I need to be down there on the 8th so they can do pre-opt work. The morning of the 9th is the surgery. The afternoon of the 9th they will do the eye adjustments. I have to be back on the 10th for final adjustments and then they send me home.


Doing the surgery will be a tall lanky Brit named Dr. Holmes (and no his first name is not Sherlock, but that would have been really funny).
He comes highly recommended and is the one surgeon most hospitals and doctors end up recommending for their seeming impossible or miracle needing cases. I guess I now fall into both those categories.

Dr. Holmes has done it before! Pulled off a miracle that is. Many times if you asked other doctors.
I actually met one of his patients.
Not at the Mayo Clinic but at the state fair of all places. I was listening to a band when this lady walks up to me and starts asking me about my eye and what I was planning on doing to fix it. It turns out she needed a miracle too. She was born with double vision and had it throughout her life. She had multiple surgeries but was never able to get one that fixed her vision. She was finally told she would have double vision for the rest of her life. Then someone recommended she try the Mayo Clinic. So a few years ago she contacted them and they introduced her to Dr. Holmes. He was able to correct her vision to the point where she only needs contact lenses to see perfectly our of both eyes.
“My amazing miracle man” is how she described him.
I don’t remember her name. I don’t remember where she was from, but here is the picture that was snapped of us at the state fair. She gives me hope that there is still a chance.
Let’s hope Dr. Holmes has one more miracle in his pocket.


We spotted the ocean at the head of the trail
Where are we going, so far away
And somebody told me that this is the place
Where everything's better, everything's safe
(Walk On The Ocean  Toad The Wet Sprocket)


Thursday, September 27, 2018

A Guy Walks Into A Bar....


I was sitting in one of my favorite watering holes with a friend a couple of weeks ago when a guy walks in, sits down next to us, takes one look at me and says “Hey, look a pirate."
I get that a lot. I have learn to roll with it as much as possible. I’ll just smile and go on my way. Once and a while I might throw an “AARRRGG” at the kids when they say it, but when adults say it I just try to ignore them.
In their defense how often do you see a person walking around with a black patch covering their right eye? It's just that after 14 months the fun has kind of gone out of looking like I am an extra on a Disney set.

So I thought I would try to show you what I see when I remove the eye patch. In case you were wondering…
The image on the right is a painting done by an artist named Ken Kimball. He was left with double vision after a brain injury. When he started to paint again he decided to paint how he now viewed the world.

This painting is the closest I could find to what I see when I remove the patch. The only difference is that, in my view, the second image is up higher to the left and tilted to the right.
The other issue I have is that the muscles surrounding the eye were damaged during the accident. This gives the doubled image the ability to move when you walk or turn your head.
All of this makes doing anything with both eyes problematic. So I wear the patch.

As for the guy at the bar? A couple of minutes after he said it he was apologizing for being insensitive and bought me a beer. That works.


Fill my eyes with that double vision,
No disguise for that double vision
Ooh, when it gets through to me,
It's always new to me
My double vision gets the best of me
(Double Vision  Foreigner)

Tuesday, August 14, 2018

Never Fold Pocket Two's

I enjoy playing Texas Hold'em poker.
There is a hand that most everyone plays...
Pocket Two's.
"You never lose with pocket two's." is what they say and a lot of times they are correct.


Well I am sitting on pocket twos for tomorrow and not sure how the deal will go.


My appointment at the Mayo Clinic is at 2 pm. It is going to go one of two ways. Real good, or real bad. I have prepared myself for the real bad scenario. Don't get me wrong, I would love to have the real good outcome, but I have already heard the bad words from the U of M and North Memorial.
I have heard it twice now. "I am sorry Mr. Engnell, there is nothing that we can do to fix your double vision." There is even a team at the U of M waiting for me to be told this so that they can help take the next step. I just don't know what that next step will be.
It almost for sure includes yet another surgery. But a surgery to do what? Fix my eyes? Remove my right eye? Or another option is to leave it alone and let it be, but sew it shut so I can not use it.


Which happens
Do I catch a runner on the flop?
Or a two on the river?
I know they are all poker sayings but that is what I feel like right now. Do I catch a miracle with this doctor and he is able to pull off some kind amazing feet that will have me using both eyes again. Or is this all a waste of time and I need to adjust to a life of using only one eye.

A lot is riding on tomorrow.
I will let you know how the deal goes.
Every gambler knows
That the secret to survivin'
Is knowin' what to throw away
And knowin' what to keep
(The Gambler  Kenny Rogers)





Monday, July 30, 2018

One Week And Three Days.


Anniversaries:
Defined as “The annual recurrence of a date marking a notable event”.

So here we have reached the week in the year that I have come to dread, especially after last year.
Here is what I am looking at and they all have a similar destination.
My anniversaries happening this week.

On August 2nd 2010 I woke up in the University of Minnesota hospital after having a brain tumor removed.
On August 4th 2015 I woke up at the Mayo Clinic after having my stomach removed.
On August 5th 2017 I woke up in intensive care at North Memorial hospital after an accident. Actually I woke up on the 6th, but the accident was on the 5th. I had 3 cracked vertebrae, a cracked skull, and the right side of my face crushed. Right eye all messed up.

The results (so far) that are due to these three misadventures. I have had 5 surgeries and been put under an additional 12 times for tweaks or fixes. That’s a grand total of 17 times going under anesthesia to fix things as a result of waking up in a hospital during one of these upcoming days.
So as you can guess I kind of want to skip this week.
I know I can’t skip the week but the anxiety still remains. Goal for the week? To not wake up in the hospital. I got this…… I hope.
So how am I doing with all of these anniversaries, well you have to take them by date.
On August 2nd  it will have been eight years since my surgery and the reoccurring tumor has not made a second appearance. The good news here that the surgeons don’t think it will return. I had a final CT scan done a few months ago and there was no sign of the tumor. I was given the all clear. This chapter of my life is now over.

On August 4th it will have been three years since I had my total gastrectomy. I got lucky. No cancer was found back then and I continue to live without the fear of Heredity Diffused Gastric cancer ever rearing its ugly head. The months following the surgery were pretty tough, but today I am fine. There are still foods that I can’t eat or if I do they give me trouble however my weight has stabilized. This chapter of my life will never end. Living without a stomach still sucks at times, but for the most part I am good with where I am at.

Then there will be August 5th. It will have been one year since the accident. Where most of the injuries have healed, the eye is still out of whack. The University of Minnesota has done all they can and are sending me down to a doctor at Mayo who has “preformed some miracles in the past”. According to the U I am going to need him to perform one more miracle if I am to keep the eye.
I should know in the next week or so when my appointment at the Mayo Clinic will be. Stay tuned.

This week consists of work (full time job), 2 shifts at the store and the Hanover Harvest Festival on Saturday. Oh and the second shift at the store is on Saturday, during the Harvest Festival, just like last year…

I just need to make it to next week and I will be good.
Right?

Especially at night I worry over situations
I know will be alright
Perhaps it's just imagination
Day after day it reappears
Night after night my heartbeat shows the fear
Ghosts appear and fade away
(Overkill  Men At Work)