Friday, January 13, 2012

Optic Neuritis

This will probably only interest the readers I know in "real life" but I had to document this in my blog scrapbook.

I have been in the hospital since Wednesday afternoon with a condition known as Optic Neuritis. Basically I had some soreness around my eye starting last week but wrote it off to change of weather (drastic from day to day. One day cold and one day hot) and possibly having a sinus headache.
After going to work on Monday and the pain increased I decided to call the eye doctor to get in after work.  He did a lenghty exam and did not see anything "alarming" but did notice some swelling that was causing my pain.  Let me go back.  My health history includes Crohns Disease, an autoimmune inflammatory disease.  I was first attacked by this in 1990 when I was in my first semester of college.  It began with flu like symptoms but ended in less than a week back in Houston at the Methodist hospital for a long two week stay and the beginning to a long road of recovery. By this point my intestines were lined with ulcers.  Not fun!  Treatment was to attack with high, high dose steroids. I immediately acquired a huge round moon face.
Fast forward 22 years and I have had a handful of flare ups along the way, some treated with a couple days in the hospital but oddly enough two of the times it happened in my right eye.  Extreme redness and pain initially, again treated with steroid eyedrops for a 4 wk course and I was on my way.  This time, things are different.  I woke up Tuesday with about a 75% loss of vision in that same problem  eye, the right eye. Scary.  And as luck would have it my husband was scheduled to leave on a business trip early Wednesday morning and he was out the door by 6am. 
By the time I got Dominic ready and off to school and made it to my office I knew I had to phone my eye doctor again.  I agreed to a 1/2 day of work since I missed work the day before and I got to the eye doctor around 12:30pm.  This time it was different and in 2 short days he saw a new problem develop and based on my vision loss he needed to send me to a specialist, stat.  He warmed me she would admit me to the hospital next door to immediately begin I.V. steroids, the fastest kind.  The eyedrops were not doing a thing and oral would take way too long.  It was so serious that they needed to get them into my blood stream and fast. 
 Here is where I panic.  It seems every time my dear husband leaves town my son either gets sick or I do.  I have no idea why! By now, it's almost 2pm and my son needs to be picked up in a few hours.  I can't hardly see and I know good and well this next doctor visit/ hospital is going to take close to forever.  I call my sweet neighbor who said she would absolutely pick up Dominic at the specified time, no questions asked.  Thank you Aunt Bru!  At this point I had no idea what meeting or training Kevin might already be in and could he even answer his phone.  
I called him on my way to the specialist and he was able to answer so I got about 2 words out then the flood gates opened.  He obviously cancelled the rest of his trip (he had only just arrived 4 hrs prior) and got right in the car and headed back.  Luckily, he was only in Waco about a 3 hr drive away and not somewhere he needed to catch a flight.  Small blessings.  He made it back to Houston in time to pick up Dominic himself, miracle.
In the mean time I am already in the E.R. getting admitted into the hospital.  This was Wednesday late afternoon, early evening.  My boys arrived with all my belongings for a hospital stay (I have the best husband EVER).  All I had was my work outfit, heels and jewelry on! Shortly after they arrived I was moved to my room.  I had a ton of doctor visits, pokes, prics, bloodwork, vitals you name it!  The first test I needed was an MRI of the brain and eye but they were kinda busy down at testing.  I had been up since 5am that morning for work and it was now close to 11pm.  The Vicoden I was given for the pain around my eye only tore up my stomach so I could not sleep.  I finally saw my window of opportunity after all meds had been administered and by 1am I was able to doze off.  At 3:20am the door opened, the light was turned on and this sweet little lady with a big wheelchair said, "It's time for your MRI."  Really....OMG I was so tired.
The MRI took about 2 hours and it was freezing.  Very uncomfortable, you can't move an inch during testing but he did cover me with blankets and we took 3 breaks.  You just have too because your body starts to get tight.  I made it back to my room around 5:40am exhausted but I knew rounds would start soon, shift changes, meds administered and breakfast so no sense in trying to sleep now.  I had now only had a total of 2 hrs sleep in the last 24 hours.
The most important thing was to get the results of the MRI.  Let me back up to the definition of Optic Neuritis:

 * Definition
Optic neuritis is an inflammation of the optic nerve, the bundle of nerve fibers that transmit visual information to your brain from your eye. Pain and temporary vision loss are common symptoms of optic neuritis.
Optic neuritis usually develops in association with an autoimmune disorder that may be triggered by an infection. In some people, signs and symptoms of optic neuritis may be an indication of multiple sclerosis, a condition resulting in inflammation and damage to nerves in your brain and spinal cord.
Most people who experience a single episode of optic neuritis eventually recover their vision!!!. Treatment with steroid medications may speed up vision recovery after optic neuritis.

I was not sure when the Neurologist or his Physician Assistant would read the MRI and visit me to discuss.  Finally around noon, Dr Phillips the P.A. to Dr Gill arrived to discuss.  I heard really good promising news!  She said the brain and surronding area all looked good but there was definite swelling around the eye - Optic Neuritis.  I will mention here that possibly having MS had been brought up not one but several times. I tried not to freeze and think too much about that.  I prayed to God that I was not sure what his plan was but I knew he already had it determined and I would just continue to believe in him.  I had no other signs, not one, of MS. I finally met the Neurologist, Dr Gill around 6pm Thursday night.  He was very nice, had a great bedside manner, explained thoroughly and answered all mine and K's questions.  Number 1 - it's almost impossible to point to a cause.  Number 2 - It could just be something viral.  Number 3 - there was nothing concerning on the brain scan but he did not feel doing a spinal tap would jusitfy anything.  It could come out negative or positive but since I had no signs of MS he would not even begin a treatment on me IF it was positive.  You could live years with it if in fact you do have it but again nothing says I do.  Praise the Lord!
As of now I am just on day 2 of 1 gram (1,000 mg) of steroids a day.  Can you say hungry??!! :)
I still have not regained any vision at this time although he is confident I will, it might not be 100%.  He said it could be 3 days before I notice any improvement.  Once I start to improve I will move home and change to oral steroids for a few weeks in a taper off effect.  And so I don't forget any details, since I am getting such high steroids my blood sugar has also escalated so I am also being given insulin injections to help with that.  I finally got a sleeping pill and slept about 8 hours here last night and even slept through my injections.  Now THAT is tired.  I will update this post as it changes so I can keep record all in one place. I welcome any prayers you might have. I am fully aware that I am extremely blessed!

*** Edited to add from Friday night 1/13/12 ***
Dr Gill the Neurologist said I should go home tommorrow (Saturday, day 3)  Yeah!  The research that was done on Optic Neuritis and the specific protocol to treatment is as follows:

3 days of I.V. steroids (via Hospitalization) 1,000 mg per day
11 days of oral steroids at home/ mg's unknown to me at this time since I am still here
I was under the impression I had to regain some vision in my bad eye (rt eye) before I could be released from the hospital but that is not true!  What I have learned is that this condition will take time to heal. Lots of time.  Even after 11 days of oral steroids at home, my eye will still continue to heal on it's own.  I will have many follow up doctor appts in the next several weeks/ months.

Dr Ghauri, the Opthamologist that my regular eye doctor referred me to and who sent me to the hospital also stopped by yesterday to visit.  Her take was that since my pain with eye movement is decreasing that is VERY GOOD.  That means the steroids are working.  Again, I will not see right away, it's going to be a lenghty process.  She said she sees this condition all the time and everybody regains their vision.  The main thing was that the brain scan did not show any specs which would have led down another road to possibly signs of MS.  So with that all behind me I just need to move forward with healing this dern eye!  My little guy is just 5 yrs old, I still have waaaay too much to see in life!  I know I will be fine and this was just another bump in my road but I trust God with everything and know he knows exactly what he is doing.  The old me would have questioned him left and right and I assure you through this whole ordeal I have not said one time, "Why me?"
Have a great weekend everyone and GO Houston Texans on round 2!!

****Edited to add, Saturday, January 14th, 2012****
I got to come home from the hospital Saturday late afternoon.  My boys and I anticipated this all day.  Dr Gill released me after 3 days of I.V. Steroids with a Rx for 11 days at home on oral steroids.  Good news is the dose went down to 80 mg per day!  My first evening was restless, virtually little sleep because of the steroids.  The next day I attempted an outing to the grocery store with the boys but started having horrible chest pains and had to go lay down in the car while they finished. Bummer, re-adjusting to the big bad world is hard.
Monday was a holiday so K stayed home with me which was nice.  Today is the beginning of day 6 on steroids and if I close my good eye while laying down on the couch, I can see the shadow of the ceiling fan blades on the ceiling, through my bad eye.  That is progress from a week ago when everything was pitch black.  I have several doc appts scheduled in the coming weeks but in the mean time I am resting, trying to walk for exercise and praying for healing.


  1. Summer, I am so sorry to hear this. We will be praying for you and hoping you will be home soon, praying for a complete recovery and healing. Let us know if you need anything. Dominic can come over for a play date this weekend if that would help any.

    I have heard of Optic Neuritis before. When I was was pregnant with Gage I experienced some vision loss, and had to see a neurologists. It turned out to be Optic migraines.


  2. Thank you for the prayers Lori! I remember your vision loss with Gage. Did you recover completely? Life is just too weird sometimes I tell you. I believe alot of this is God telling me I have to slow down. Dominic is sad that Mommy is here alone but Daddy is taking great care of him. I have high hopes of getting home by Sunday at the latest but right now I just need to start regaining some vision. Thanks again for writing!