Tuesday, June 18, 2013

Update

By Lisa S Thursday, August 09, 2012

Hello out there.  Well its been over a year since I was diagnosed with VKH.  For those of you who don't know my situation, I was diagnosed with a disease called VKH in June/July of 2011.  VKH (Vogt-Koyanagi-Harada) is a diseased named after the doctors who discovered it.  It is "a multisystem disorder characterized by granulomatous panuveitis with exudative retinal detachments that is often associated with neurologic and cutaneous manifestations. " -Author:  R Christopher Walton, MD; Chief Editor:  Hampton Roy Sr, MD.  He goes on to say " typical cases of VKH disease are uncommon. "  and " VKH disease occurs more commonly in patients with a genetic predisposition to the disease, including Asian, Middle Eastern, Hispanic, and Native American populations. "  I am half Native American, my grandmother is full.  I was told by the Retina Specialist that I have had this disease my entire life and it is genetic.  But it normaly activates in older patients with catarac.  I am neither the age or have catarac, but I did have an eye surgery in 1993 on my left eye and it didn't correct the vision, but it weakened the eye.  At the end of May 2011 I had been suffering from a 5 week migraine and fuzzy eyesight in the left eye (this was normal for me, it was how I know how bad the migraine is).  On Saturday May 29th I woke up with fuzzy, itchy, and pain in my eyes.  I thought it was an allergy attack and took some allergy meds and went on with the day.  That night we were debating about going back to the ER for a 4th visit of the month.  So I said if in the morning I am not feeling any better we need to go.  Sunday May 30th I woke to my then 6 year old daughter telling me she was ready to go downstairs.  It was 7am, amazing how little people can get up on the weekend at O'dark thirty, but can't get out of the bed Monday thru Friday for school, lol.  I rolled over and without putting on my glasses, went to get out of the bed and fell to the floor.  My vertigo was off.  I thought it was because I was not awake.  I struggled to get to the bathroom.  I got in there and was washing my hands and looked in the mirror to see that my eyes were blood shot red and the lids were swallon.  I yelled, and I do mean yelled for my husband to come.  He came in and took one look at my face and decided we were going back to the ER and we weren't leaving this time.  We get to the ER, I walked up to the check in desk, and I could not tell you what the person looked liked or what they were wearing.  I knew it was a woman because of her voice, but the ringing in my ear was getting louder.  As I walked back to the exam room I fell over.  I had no balance.  Within 15 minuets, I had NO vision, a headache to beat all of the migraines I have ever had, and my eyes were swallon shut.  Next thing I knew was there was 5 docotrs in the room with the nurse who I seen at my previous ER visits.  They rushed my husband out of the room.  I remeber hearing them say they have never seen these symptoms before and they did not know what to do.  They called in the Internal Med doc, Neur-surgeon, and the Ophthamalogist.  I was getting very nervous and no one was telling me anything.  After a MRI of my head, CT scan, and angiogram of my eyes, we found out that the retinas were detaching, there was inflammation and fluid in the back of both eyes.  I couldn't open my eyes to even do the vision tests.  They had a nurse hold my lids open to be able to get a look inside.  After ( about three days later) heavy doeses of Steriods, Pred forte 1% eye drops every two hours, and dilation drops every 4 hours, and some other meds, the outside swelling started to come down.  I regained some vision in the right eye.  It was at 20/70 when I was allowed to go home at 2 weeks.  My left eye was still "dark", red, and swallon.  My life changed drasticly when I got home.  Relying on my kids to do a lot, my husband turning into my driver and caretaker, and not being independent.  It was a rough summer.  Now please understand, I have been wearing glasses since I was 16 months old, so I got eye exams every year.  It was religeon for me.  I had just had a check up one month before all this happened.  I was doing weekly eye appointments now.  Still on 80mg of pill steriods, eye drops every 2 hours, and dilation drops every 4 hours when I got home.  My right eye improved to 20/30 in 3 weeks, but there still was nothing in the left eye.  It was August when I began to see out of my left eye.  It started as a black curtain lifting.  Then it was just color blobs on TV.  Details started appearing at the 8 week mark.  By the middle of August I was seeing 20/60 with no end sight of the steriods.  So now (a year later) I am seeing 20/20 in the right eye and 20/40 out of the left!!!  The retinas are laying down.  However,the steriods did damage in other areas of my bodies.   I have deveolped dead bone in the right knee.  I had surgery in July  for this condition.  Ortho doc drilled 8 holes in the femur and grafted the front 1/3 of the cartliage.  There is evidence that the same situation maybe happening to my left knee too.  I'm very hopefull that this surgery will work.  I am very excited for all my new findings and doings.  I did have to go back on all steriods and drops because I have started seeing flashes of light, floters, and have eye pain again.  I was off of them because of the surgery and because my immunion system is non-exsistent becasue of the VKH.  So, to be on the safe side we (doctors and myself) came to the conclusion that I need to be back on them.  Even though I'm disappointed to be back on them and that I will not be in remission this October, I am still hopeful for my knee, that I know the signs that a flare up is coming, and for my pain control for the migraines.

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By Lisa S— Last Modified: 08/09/12, First Published: 08/09/12