Oct 31

Many firsts, but no lasts

As you can imagine, during the past months there have been many mornings that I didn’t want to get up.  That would have only made the next morning that much worse.  I’m no better than anyone else, but I just may be more stubborn.  Getting up gave me something to build on.  The next day might not have been much better, but it usually didn’t get worse.

I still feel awkward and at times and even clumsy.  But, life goes on.  We had Steve, Chris, Cassie and Toby Farmer down this weekend from Waterville.  It was nice to relax and catch up without the pressure of going anywhere.  One night we grilled burgers and had Connie’s Rotel dip with brownies.  Steve was holding the plate as I took the burgers from the grill.  As I took one from grill to plate, my lack of depth perception got the best of me.  Too bad.  That was Steve’s burger.  This wasn’t the original intent, but he was nice enough to eat it.

The only place that Connie and I went to was the Ohio Music Education Association (OMEA) Marching Band State Finals.  I’m proud to say that Hilliard Darby High School, Grant Wagner on trumpet, earned a “#1 Superior” rating for their performance.  “Way to go Wagner!”

This marks another milestone in the “firsts” that I’ve been able to see.  Much like Colin’s baseball games, Jess’ volleyball games and the school events, with all three, it definitely matters more.  None of these would be possible without a loving mother and a wonderful wife.  Connie’s impact on all of our lives shows like fingerprints.  Just look at their grade cards for the first nine weeks.  She’s always made school and family a priority.  Just look at my success with work this year.  I’m having a very good year.  She actually drove me to different clients across Central Ohio for the past 8 months.  That’s even hard for me to believe.  You can’t be more committed than that.

I’m not going to subscribe to the theory that I should live every day like it’s my last.  Because, it isn’t.

Oct 23

What does “better” mean?

There have been many people ask me if I’m feeling better.  I’m happy to say that I feel great, but that’s been the case for some time.  My response has always been, “I feel great, I just can’t see that well”.  This is still true, but I’m seeing some changes in my eyelids.

My left eye, we’ll call it the good one, is still open 3/4 of the way.  The right eye, or lazy one, seems to be more open.  Connie has commented on this and I notice it by how much I feel my eyelashes touching my cheek.  That’s how I can tell that there is a change.

There have also been times, that I notice it open, because of the sudden double vision.  It’s a necessary part of improvement, but is scary. All of a sudden there will be two of everything.  I just have to stop and focus with my left eye.  Sometimes I can wink with the right and everything returns to how it was.  Looking down, for obvious reasons, always means seeing double.  There has to be a chance of that lid opening or I’ll have to have more in-depth surgery to have it lifted next year.   We’ll approach that when the time comes.

I was experiencing some dizziness a few weeks ago, so I went to see my family doctor.  All of symptoms pointed to a lack of fluids.  He actually told me I should add salt to my diet and drink more.  However, not the kinds of fluids I would have hoped for.

One sensation that hasn’t changed in nearly 8 months is the feeling in my leg and foot.  It’s like they have fallen asleep.  There was also the same feeling from my knee upward for a few months, but less intense.  It was almost like someone had drawn a line straight down the middle of my body.  That started shortly before being discharged.  The doctors believe it’s because of the swelling in my brain.  I sometimes wonder if it’s not connected to the other cavernous malformation still in my brain stem.  That swelling, you may remember, can take up to 12 months to go away.  Only time will tell.

I’m more confident and comfortable.  I don’t wonder what others think of my appearance.  I don’t apologize for how I look.  I’m not sure that my outside has changed, but the man inside sees things differently.   That’s what “better” means.

Oct 17

Brian Update’s from Connie

Sent: Sun, March 6, 2011 6:05:43 PM
Subject: Brian Wagner

Hey Family & Friends!  Brian is the great communicator in our family, but since he is not himself, I am filling in.

You may or may not have been aware that Brian was hospitalized again on Fri.  His double vision has returned, as well as ptosis (drooping of eye lids).  He stayed overnight & was sent home with some very strong steroids, to try to get the brain swelling to be reduced.  We are patching one eye & that is helping somewhat, but his eyes are barely open.  He is going to conduct Mainline business as usual – with a change in computer screen resolution & the hiring of a chauffeur (me!).

Attached is a great summery of his underlying condition – cavernous angioma.  It may be more info than what you would need, but it provides a pretty simple explanation of this complicated problem!

Our neurosurgeons here inColumbusfeel that now that his symptoms are showing up more often (since he was also in the hospital in Nov), we should probably consider further treatment.  In the past, they have always told us NOT to have surgery, especially in the brain stem – since Brian had minimal problems.  Now that he is experiencing more issues, we may need to look toward that as a solution.  The drs. have directed us to three experts in theUS.  They have told us that we need to seek the best surgeon who specializes in carvernoma ‘s in the brain stem.  As you can guess, their are not many!  So, beginning Monday morn, I will be starting the process for referral to a neurosurgeon in Phoenix, AZ.

Obviously, we don’t know how long this process will take.  But the current task at hand will be for Brian to regain his vision, so that we can be a family of 5, instead of 10!  Thank you for your prayers & we will keep you posted.

Connie Wagner
luckeycackle@yahoo.com

 

Sent: Saturday, March 19, 2011 5:26 PM
Subject: Brian Wagner Update

Hello Family & Friends & Co-workers,

It has been a long two weeks of researching, learning, & praying.  Thank you all for thinking of us.  In summary, the characteristics of a carvernoma are such that once it bleeds, it will have a tendency to bleed in shorter intervals & do more damage each time.  There are no treatments other than surgery.  So, we have received word from the “rock star” of endovascular neurosurgeons, Dr. Robert Spetzler, that he is willing to perform the surgery.

Currently, Brian feels “fine”.  There has been little improvement in his vision & he is tapering off the steroids, as they have not really helped.  I, on the other hand, have a constant tummy ache!

Brian’s surgery will be on April 1st in Phoenix AZ at St. Joseph’s Hospital.  They are estimating a 5 day hospital stay & once he is released, we can fly home.  We have decided we will stay an extra day after he is released to “vacation” (& make sure things go ok).  They cannot state that surgery will make his current symptoms go away, but it may prevent him from having worsening symptoms in the future.  So, that is all the encouragement Brian needs to feel like this is the right decision.  His positive attitude will make this work!  For all you medical minded folks the procedure is:  a left superior cerebellar infratentorial resection for a mesencephalic cavernous malformation.

WE CANNOT THANK YOU ENOUGH FOR YOUR SUPPORT THROUGHOUT THE NEXT MONTH.

Connie Wagner
luckeycackle@yahoo.com

 

 

Sent: Saturday, April 2, 2011 6:05 PM
Subject: Brian Wagner Update

BRIAN HAS BEEN DISCHARGED.  Yes, you read that right!

26 hours after brain surgery!  Never would have imagined that we would be in this position — but I am NOT complaining.  A doctor last night commented “amazing” & this morning Brian got a fist pump from another doctor.

Our plan is to stay in our cozy hotel for the next few days, as recommended by the doctors & nurses.  We originally booked the return flight for Wed – so we will probably just keep that.

Brian’s vision has remained unchanged & is the same as before surgery.  A neurosurgeon has told us to give it 6 to 8 weeks to heal & then visit a neuro ophthalmologist.  They will no doubt have some treatments that will improve his quality of life.

The power of prayer has been real to us — I know Brian would ask that along with your praises to God for a completely successful surgery, that you keep on praying for his vision to improve.  Thanks all!

Connie Wagner
luckeycackle@yahoo.com

 

Sent: Saturday, April 9, 2011 9:19 AM
Subject: Brian Wagner update

All – In Brian’s words “it has been a rough few days”.  The plane trip home was very difficult for Brian, as he vomited several times & then that continued well into the night.  We feel some of that was due to the percocet, so he has stopped taking that medicine.  But he has pretty much stayed in bed since we have been home.  Hopefully, this resting will allow the swelling in his brain to subside, and we pray that this is the low of his recovery period!

Connie Wagner
luckeycackle@yahoo.com

 

Sent: Fri, May 27, 2011 at 5:23 PM
Subject: Brian Update

Hello All – Brian had his 4 hour appointment with the neuro-ophthalmologist today.  I learned that he can probably see better than I thought & Brian probably learned that he sees worse than he thought!  But in wrap up, Brian remains at status quo. The doctor said that Brian’s symptoms are as he would expect with his carvernoma history.  He explained that this is a nerve issue, nothing to do with muscle damage – therefore, there is no therapy or drugs that could help his situation.  Only time. Basically, this appointment served as a baseline for future testing.  (We have the next appointment set for mid July.)

He said that it will be possible to have eye lid surgery to help them open, but that no surgeon will do that until after 4 months out from the last sign of improvement.  He also said he can use prisms in the glasses to help with the double vision, if his right eyelid comes open.  At any rate, the dr. did give us hope that Brian may be able to drive again.  And that he has no restrictions – he can do whatever he needs to do to help him see.  So that includes golfing, if he can get someone to watch his ball go into the woods/water!

Brian is feeling well, and continuing to make the best at Mainline.  Thanks for thinking of us!  Brian has many nicknames, but will now be considered Miss Daisy!

Signed, Morgan Freeman (AKA Connie)
Connie Wagner
luckeycackle@yahoo.com

 

Sent: Sun, Aug 27, 2011 11:45 AM
Subject: Brian Wagner

Well – we are putting the “Driving Miss Daisy” movie back into the archives.  Brian has been authorized to drive!  The neuro-ophthalmalogist checked the vision in his left eye as 20/30 —  to legally drive you must have 20/50.  He does have restrictions, but it seems as though I was the only one at the appointment who heard those!

Brian’s depth perception is minimal – so the doc recommends that he works with a therapist at Dodd Hall at OSU to help him with that as well as his defensive driving skills as a monocular driver.  The doc also recommends that he does not drive at night, & Brian has also agreed that driving in the rain might not be to easy either.

The neuro-ophthalmalogist does not want to make any decisions about his closed right eye, or about a possible lid lift for his left eye until 12 months out from surgery.

Needless to say, Brian is one happy guy.  As always, thanks for thinking of us.

Connie Wagner
luckeycackle@yahoo.com

 

Sent: Wed, Sep 14, 2011 14:17:53 GMT+00:00
Subject: 
Brian update

Well – we have had a bit of a set back for Brian’s driving situation. If you’ll recall, the neuro ophthalmologist felt he was OK to drive since his vision was 20/30 in his open left eye.  But he did want him to check in with a occupational therapist & a “Certified Driver Rehabilitation Specialist”.  (These folks would offer the paperwork necessary & proof for Brian to drive without any liabilities.)  Brian had that appointment on Monday, and the occupational therapist would not pass him.  Basically, he has too many blind spots — his peripheral field of vision does not go the required 70%.

We tried not to be too mad at the therapist (thinking of our niece, an OT!), since she could not recommend he get back on the road due to insurance liabilities (thinking of our sister, the insurance agent!).  They did suggest Brian might try a “Goldman Visual Field Test” — evidently it is a little more forgiving.  If he can pass that one, then he can proceed with an in-car driving assessment with the “Certified Driver Rehab Specialist”.  Finding someone who provides this specific test proved to be a bit difficult, but we do have an appt. set up for 9/28.

If he doesn’t pass this test, then we will have to wait for surgery next year to take place to open his right eye, get prisms in his glasses to correct the double vision, and revisit the OT & driving specialist.

Obviously, we are all quite disappointed & trying to keep our thoughts positive!

Connie Wagner
luckeycackle@yahoo.com

 

Sent:  Mon, Oct 17, 9:45 AM
Subject: Brian Update

Happy Fall!  We’re still in summer mode continuing to ride the roller coaster of life — but we are back on the top part of that climb!  A couple of weeks ago Brian PASSED the Goldman Visual Field Test & met the parameters the state ofOhiomandates for driving.  So, last week Brian met with the driving specialist to take his 45 min in-car driving test.  He PASSED, and is now a legal driver, with the recommendation & paperwork to prove it.  YEA!

So, he will begin to enjoy his new car & driving our kids around again!  We will continue to wait for any improvements on his eye lids opening & go back to the neuro ophthalmologist in 6 months.

At the suggestion of one of Brian’s friends & mentors, he has started a BLOG.  I’m really proud of his courage & attitude – his writing tells us how he does it.  Take a look at it sometime soon!  (If you want to get automatic updates sent to you when he writes – be sure to click “follow” on the top of the blog page.)

http://brianupdate.wordpress.com/2011/09/28/im-thinkin-im-thinkin

Connie Wagner
luckeycackle@yahoo.com


Oct 17

Smile…really?

That’s been one of the hardest things for me to overcome…the realization that someone is going to take my picture.  When it first happened I wanted to stop them.  It was one of my kids playing with my iPad.  I wanted to tell them to wait until after I had gotten better.   There had to be something in them that didn’t care about my appearance.  I couldn’t believe it.  They didn’t “like” me for the shell, but for the inside.

When I was at the Barrow Institute in Phoenix, they made me take a picture as part of admittance.  I was right after a young man in his late 20’s.  He was a construction worker there with his dad.  His eye-sight had just left him that morning.  His dad was on the phone with employers and relatives.  I just remember him sitting with his head held low.  He was terrified.  Connie even commented on how rough his situation looked.   His name was called and his picture was taken while he stood there in misery.  That was the last we ever saw of him.

My turn.  Should I look the same way?  I felt the same way.  It was the day before brain surgery for crying out loud.  “Stand in front of the camera, sir”.   There must be something in my genes, because when I heard camera the teeth came out.  People always said that I have a Wagner smile.  That’s a compliment in a BIG sort of way.    You have to realize that I can’t even see the camera, unless I were to tilt my head back.  I just knew there was one.

We took a trip to Cancun in December, 2010.  At the end of the trip we all had pictures taken.  One of them was taken as a group.  Pat & Julie Luther, Steve & Chris Farmer and Connie & me.  Steve said that we should all stand in a line, shoulder-to-shoulder with our arms crossed, and look expressionless.  The negatives came back and there I was, grinning from ear-to-ear.  That is the only expression that I have.   Farmer found that to be funny.

In sales you’re taught to walk and talk with confidence.  You always know more about your product than your customers do, so why shouldn’t you.  That’s the same approach that I take with my meetings.  They always start with a smile and a handshake (even when I miss the hand :-)).  Then there’s always the casual chit-chat.  Most of my customers are also my friends.  But, my mood shouldn’t matter.  I don’t want distractions to the meeting, because it’s not about me.  If they want to know about how I’m doing, they will ask.  Otherwise, let’s talk about business.  I don’t want my appearance to become a distraction.  Understanding that I am a bit of a science project, I’m always happy to answer the question at hand.

Once they had taken the first picture it became easier.  It’s been more than seven months and the shell hasn’t changed that much.  It’s been 44 years and I’m still the same person, on the inside.  CHEESE!

Oct 03

Choose Fear or Hope

The choice between Fear and Hope had to be made early on.  This doesn’t mean that I haven’t been scared during the past 6 months.  It just means that I’ve tried to live my life the same way I would if I had two good eyes.

I’ll never forget going to one of Colin’s pre-season baseball games.  It was less than two weeks after surgery.  Connie urged me to go and I’m glad she did.  Of course, she had to drive and then lead me to the field.  I couldn’t see a dang thing even with my finger propping one eye open, as we looked into the late afternoon sun.  People had to tell me who was playing which position.  But, I was there.

The fowl balls put everyone on edge, except me.  The crack of the bat and smell of grass was all that I needed.  I was happy to shout Go #17, Go Wagner, nice job Colin!

I chose Hope!