Thursday, May 10, 2018

Josh's 8 Week Update

Josh, my husband of almost 23 years, has been struggling with a severe equilibrium imbalance for 8 weeks. He isn't able to work, drive or do pretty much anything. The world is constantly moving and the only relief he finds is when he is deep in slumber each night.  He is miserable, bored and feels absolutely horrible.  He will have episodes where the world turns upside down and stays that way and often then the panic sets in. 

Josh has seen 7 doctors. Today the 8th. In January, Josh had a screw placed in his skull to anchor a vibrational hearing aide. (Born deaf in his left ear, this hearing aide uses his skull and jaw bone to tranfer vibrations to his hearing ear to enable him to hear more.)  Weeks later, he became constantly dizzy. He was diagnosed with vertigo and told it would get better soon. There has never been a case reported where someone with a titanium screw implant has reported excessive continual dizziness. Weeks continued to pass. He has been diagnosed with an tumor in his left ear canal from a cat scan.  Actual measurements of the acoustic neuroma were given. And the next specialist said that an acoustic neuroma can not be diagnosed by cat scan, and that the MRI revealed absolutely nothing. He has sought chiropractic care.  It didn't help at all. Yesterday, when he went through additional dizzy and balance testing, the audiologist and ent surgeon both agreed that they believe this was caused by virus. Months ago, he had a minor cold.  They believe the virus caused inflammation in his right ear canal and that the inflammation hasn't decreased and is causing the severe imbalance.  When asked if it is possible that we are missing something, anything, something rare even, both doctors both said yes, it is possible but they do not think so. 

Today Josh went to Vestibular Rehabilitation Therapy.  The therapist will try to help him to teach his body to counteract the extreme equilibrium imbalance and hopefully bring him some relief. There isn't anything left for Josh to do.  This is it.  The U of M has now offered to see him to see if the head of the ENT department can help him after refusing care because they were not able to diagnose him.  Sure, we will book the appointment, but will they be able to tell us anything? Will they be able to figure it out? Is is really just the end result of inflammation from a virus. Will they be able bring relief to Josh? Even a little bit? 

Josh exited the therapists office defeated.  He needs to see a different therapist. She ruled out BPPV and knew she couldn't help. No charge for today's appointment. I shed a few tears on the way to elevator, Josh couldn't even speak as he took very small deliberate steps behind me.  He is now not scheduled until the 23rd of May to see the specialist. We were told he was scheduled with the specialist today. Another hurry up and wait day. Today has been extra difficult for Josh and he has retreated to bed. There is nothing more he can do. 

We have researched Vestibular Therapy Exercises on google this evening.  ( He has already done all of the other exercises and maneuvers that typically help vertigo patients.) Not knowing if any of them will help, Josh is still willing to try. He is willing to try anything to bring even the slightest relief. He can't sit and wait and hope his condition will improve before the 23rd.  Because these past 8 weeks, like I said, he has only gotten worse.

I want to thank our family and friends who have come to our aid. Who have prayed relentlessly. Who have stopped by for visits when Josh is able to be upright to help break up the monotony. (He describes this as the worst form of Groundhog's Day.) Thank you for your offers to help and for telling me what you are going to do rather than asking me what you can do to help. Thank you for your patience when I don't respond right away to emails and text messages. Thank you for speaking truth and praying against a spirit of discouragement. Thank you for loving our family as you always have. 

No comments:

Post a Comment

I Was There To Hold His Hand

     Our dad is dying. He is in his final days. My sister Angela is doing an amazing job caring for him in her home. She is overseeing care,...