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)

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)

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)

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)

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 2^nd 2010 I woke up in the University of Minnesota hospital after having a brain tumor removed.

On August 4^th 2015 I woke up at the Mayo Clinic after having my stomach removed.

On August 5^th 2017 I woke up in intensive care at North Memorial hospital after an accident. Actually I woke up on the 6^th, but the accident was on the 5^th. 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 2^nd  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 4^th 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 5^th. 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)

A Medical Update. The Hail Mary.....

Here is a short update from my appointment with the surgical team at the University of Minnesota yesterday.

Remember these are the folk that are supposed to do the key surgery to fix the double vision problem I am having. I have had to wait to see them until they were able to get my eyelid stabilized, which we believe that they have done. Now I just wanted to hear when the surgery would be so I could put all of this behind me.
I was not expecting this..
"I am sorry, but we can't fix your eyes. Everything that we could do would mess up your vision and possibly leave you legally blind. Again I am sorry but there is nothing more that we can do for you."
I just sat there and said out loud crap (actually I used a different word and I am pretty sure you can figure it out).

Here is the issue.
Usually if you experience double vision the view from the one eye is either vertically or horizontally impacted. So what you see out of one eye is higher or lower, or to the right or the left of what you see out of the other. Well my other eye's view is wide high and shanked to the left. And that is not the issue. That is fixable.
The problem now is that with all the scar tissue that has developed my right eye is not it the right place. Not only is that eye looking high and right, it is also kiddywampus. It is not level. So if they even try to bring the two views together, I still wont be able to see because one is tilted significantly to the right. The view will be completely blurry and no matter how much they try they wont ever become one.
So they can either fix the location of the eye or the orientation of the eye, not both. And in both cases doing the one surgery will make the other issue worse. They also told me that due to the amount of reconstruction done on that that eye socket and the amount of scar tissue in the area, I am "not a candidate for further eye socket surgery." So I am kind of stuck.
This is the second hospital network that is not willing to do anymore work on the eye. First North Memorial and now the U of M.

So what is next.
The surgeon at the U knows of a guy down at the Mayo Clinic who has had some success working with cases like mine. So I have a referral to go down and see him.
The problem there is that I still have an outstanding bill with them from my stomach removal procedure and follow up fun I went trough with that adventure. We have been going back and forth with my insurance company on this and if I want to get into see anyone then it looks like I am going to have to pay it. So I will. However, Mayo Clinic will not let me schedule this new appointment until that bill is cleared up. That is going to take a bit.
And if I get down to the Mayo and they can't help me..
We start the conversation about what is next including very possibly removing the eye.
Kind of running out of options here.


And with all of his strength he gave a mighty shove
Then a miner yelled out "there's a light up above!"
And twenty men scrambled from a would-be grave
Now there's only one left down there to save, big John

(Big Bad John  Jimmy Dean)

A Post From The Beach

Happy Tuesday everyone.
When we go on vacation one of the things I like to do is meet new people. This trip to the ocean is no exception.
Now I have met a few folks so far but the first guy kind of stands out.
His name is Tim. He is from New York. Tim and his wife own the townhouse attached to the one we are renting. He is retired and his idea of a perfect morning was to have his coffee beachside. He told me right away that he lives here six months out of the year and the fewer the tourist around him the better. So I was surprised when he asked me to grab a seat and join him for his morning ritual.
Now Tim is loud, complete with the stereotypical New York accent. He is opinionated. He is passionate. He loves his family and this country complete with all of its "idiots and morons". For a good thirty minutes or so we were agreeing, disagreeing, correcting each other and laughing. Although he also did try to sell me the townhouse we were staying in because I "seem like a nice enough guy". And by the way it was for sale, and he figured he could get me a good price on it but it needed some work.

As I mentioned we had been going back and forth for a good thirty minutes when he pulled a left turn with the conversation and wanted to know what I was selling.

"What?" was about all I could respond.
"Sorry" he responded "but most people who end up stopping by to chat on the beach at this time of the morning are either selling something or need money, and I noticed your shirt."
I was wearing my CDH1 mutation positive t-shirt. The money we paid for our shirts went to support further research on the mutation and look for possible cures. It is a shirt to remind me where I have been and what I have over come not some fund raiser.

He quickly added, " Don't get me wrong I am not mad, I have enjoyed our talk, but want you to know that it's ok to give me you pitch".

I laughed and assured him I wasn't selling anything and gave him the readers digest condensed version of my story. He was a little skeptical at first because I was wearing my eye patch and we all know that folks can't live without a stomach. Though he did have a buddy who knew somebody who had part of his removed he thinks.
So we chatted a bit longer and I decided to head back to the townhouse. I thanked him for letting me join him and maybe we chat again one morning before we leave and I left.

Later in the day we crossed paths again on the beach and I greeted him by name. His wife wife wanted to know how he knew me so he told here. "They're renting the unit next to ours. I told you. The guy without a stomach.
Even here I am the guy without a stomach!

I am figuring he will be telling my story when he gets back to the Big Apple.

All of his life, he's mastered choice
Deep in his heart, he's just, he's just a boy
Living his life one day at a time
And showing himself a really good time
Laughing about the way they want him to be
(The Best That You Can Do,  Arthur's Theme   Ronan Keating)