Tuesday, November 12, 2013

Drama Drama Drama (pronounced with a Irish accent)

Really.  It never ends.
We've had some really rough days lately.  6 to be exact.
My husband had an EEG last week for his tremors and saw a neurologist.  The neurologist said he thinks my husband has temporal lobe epilepsy.  WHAT?
They used strobe lights as part of the EEG, and somehow triggered something nasty inside of my husband.  Now we are fiendishly trying to find the off switch to put the beast back to sleep.
Since Thursday pm, he's been in a state of frequent seizures.  As in, hours at a time of waves of seizing - not blacking out, but convulsing out of control.  Can't walk, can't talk.  At least it isn't very painful yet.  Ugly.
Not what I voted for.

On Thursday the Dr. office was supposed to set up an MRI.  Monday rolled around and we still hadn't heard back from them, so I called to see if it had been set up (nope) and I set it up.  The Dr. office said they'd tried for 3 days but hadn't been able to due to insurance issues.  Whatever.  I distinctly told them South, the 3T machine, with epilepsy panel.  Ok they said and set it up.

I called the Dr. office yesterday am first thing to tell them that my husband's previous tremor a couple of times a week had morphed into an angry blood sucking monster.  They basically gave me the equivalent of 'that's nice dear, and patted my hand' and told me after the MRI, they could see when the Dr. could see him.

I called this morning to ask about sedation for my husband since he is seizing so badly (went through it again with them) during the MRI.  They couldn't recommend that I gave him an anti anxiety medication he had on hand from his first hospital experience when this all started 6 months ago.  And they didn't really want to mess with trying to set up a sedation team for the MRI.

We showed up 30 min early as they had asked.  My husband started convulsing, so they led him to someplace to lie down and were going to get ready to do it.  Then somehow, they looked at the script and came and told me that the procedure had to be done at South, because they didn't have the 3T or epilepsy protocol (yeah - the one I'd requested).  Yeah, what a pain.  They tried to fix it but after two hours, couldn't.  My husband did score some Xanax though.  At least that was something since he was freaking out.  They also informed us there was no way that he could have an MRI in his current shaking condition.
They called the Dr. office, and they recommended that we go to the ER.  What a mess.

Eventually we left, and tomorrow we will try over WITH a sedation team (he's going under), and at the correct facility, with the correct diagnostic panel.

What a ride.  Hoping against all hope that we can find some answers very soon.
  

3 comments:

Plastering Utah! said...

We love you and are keeping you in our prayers!

Plastering Utah! said...

We love you and are keeping you in our prayers!

Caterina B said...

I am so sorry for the big health scare you all are having. Hope the MRI with sedation went well. I can testify that an MRI of the brain is awful if you are aware. I finally had one with sedation, too. I don't even remember a thing about it, which is exactly the way I wanted it!
Hope you get some definitive answers soon.