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.
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.
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!
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!
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)
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.
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!
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.)