Tuesday, April 29, 2014

A Little Medical Update...

Today was a LONG day.  Today was the day we went to see a new specialist in Beverly Hills regarding Jon's eye.  We pulled out of our driveway at 8:30am and pulled back in at 7:30pm.  Jon lives with daily eye pain that we know is largely due to the fact that he cannot blink.  Because his eye cannot close, it dries out, stings, or as he describes it, "Feels like an ice pick in my eye."  Since we are not fans of ice picks in our eyes, we have been trying to find a remedy for this issue.  As we have found with every area of science/medicine.... everyone has their own opinion and recommendation.  One doctor recommended Jon have a gold weight put in his eyelid to help his eye blink.  Another doctor said that the gold weight will be successful during the day, but gravity won't work in his favor while he's laying down to sleep.  So another doctor recommended a Tarsorrpaphy which is a procedure in which they stitch the eye partially closed.  This allows the eye to blink fairly well, but also protects the eye (specifically the cornea) from particles in the air etc...  Yet other doctors find the Tarsorraphy to be an outdated procedure.  The doctor we saw today does a special procedure where they would put a Spring around Jon's eye. Similar to the end of a safety pin, there is a part of the spring that goes on the top eyelid, coils around the corner of the eye, and then a part of the spring that goes along the bottom lid.  When this method is used with the 3rd nerve in the brain (the "eye opening muscle" - which was not injured during surgery), the eye is able to open and close.  The doctor we saw today is known for creating this Spring method.  We found out today that he didn't actually create it, but he was the one to perfect it.  ;)  Until recently, he was actually 1 of 2 doctors in the world who does this procedure!  (the other one is in Paris)  He did recently train the staff at Harvard, so now you can only get this procedure done in Paris, at Harvard, or with our Dr in Beverly Hills.  I'm not sure if that's cool or weird.  ;)  He has done the surgery over 1000 times, so that is a great thing - and he was recommended to us by the head of Neurosurgery at USC.  Anyway, after hearing about the procedure (which does have its own set of side effects), we decided it is a great option, but we want to wait on this particular procedure a little longer.  Jon is 7 months post-op, and although the procedure can be reversed if needed, we think it is a little invasive to do this early on.  We want to give Jon's facial nerve plenty of time and space to heal - so we would want to wait at least 12-18 months post-op before doing this surgery if we can.  Time will tell.

In the meantime, we are looking into a few "stepping stone" procedures/methods to help get Jon some relief from the pain while we give his body/face/nerves time to heal.  Jon was fitted with a special "contact lens" today that was put in his eye and will stay there until his next appointment in 1 month.  This type of contact lens is used to help protect Jon's eye/cornea and also to help keep moisture in.  The doctor is hoping this will help alleviate some of Jon's pain.  Unfortunately, this contact has only been in Jon's eye for about 6 hours and he is going nuts - in so much pain and it is very uncomfortable for him because he can feel it, etc..  Not many know this about Jon, but he has a "thing" with his eyes.  He was bit by a dog near his eye at a very young age, so he has had a life long "issue" with anything going near his eyes.  I've never been able to brush an eyelash off of his cheek or anything.  When the nurses wanted to put eyedrops in his eye in ICU, he batted them away.  Not on purpose, but just his reflexes kicked in.  So as you can imagine, this whole eye issue has been THE WORST thing for him.  Of all the things in the world that could have happened to him, this is the one part of the body that he is squeamish about and of course, the one thing now causing him the most trouble.  I'm not certain Jon will be able to keep the contact in for the full 30 days.  If you know Jon, you know he will sure try!  But it's going to be difficult for him.  Would you pray that the contact will "settle in" and won't bother him?  And that he will in fact find relief from the pain with it in?

If that doesn't work, we will start the surgeries.  First will be a surgery to put a plastic piece underneath the eye, above the cheekbone.  Underneath Jon's eye - his bottom eyelid (whatever you call that) is sagging, which makes blinking an issue.  The doctor thinks that by raising that part of the under-eye, it will help his eyelids to meet easier.  We also might have the gold weight put in at the same time, if we do that surgery.  The gold weight seems like a good "stepping stone" toward the Spring.

Honestly, the reality is we don't know for sure what we'll do or not do.  We shall see.  It was a lot of information to take in today.  It's one step at a time and right now, the contact lens is our "step."  We are also trying to buy some time to get us to September, which is when our "Open Enrollment" is and we'll hopefully be able to switch to a PPO.  Oh the details... So many details....

While I am updating with medical stuff, allow me to share some more news!

We have a friend we met via Jackson's baseball team this season.  She works at Hoag Hospital in Newport Beach and offered to take Jon's MRI scans to work and see if she could get someone to look at them for a 3rd opinion for us.  (in regard to the tumor re-growth and what course of action to take...)  We just found out that all of the Neuros at Hoag are meeting for a special Board gathering and they have decided to use Jon's case as an official "Case Study" that they will present and work on THIS THURSDAY!  They will look at Jon's notes, study all the details of what has happened with him to-date, and then decide on what course of action they would recommend!  What an amazing gift to have so many brilliant minds looking at Jon's case and offering their wisdom.  We are SO grateful!

Well I think that's it for now.  It's almost midnight after a very long day, so I'm not sure any of this made sense.  I'm not even positive I made one complete sentence.  But I wanted to at least try to get some of the updated info out there.  Because you have prayed.  And we are grateful!

Love you all.....

1 comment:

  1. He got the contact!!!?! That man has so much endurance!