Tuesday, April 17, 2012

Epilepsy Journal

Last Wednesday night, my wife was fixing dinner and I was on the couch with the news on TV.

She came over to the couch and sat down next to me and looked at the TV. I asked what she was interested in. She then started exhibiting the seizure she had felt coming on.
I held her and prayed for her. I talked to her to get her attention, telling her how much I love her.
I've found this to be efficacious.

After a few minutes she started to come around.
She had felt it coming on and turned off the burners, but didn't remember coming to the couch.

This was the good kind. The kind where we don't go to the hospital, which have become frequent the last few years.
With that kind, I would hold Scherie and not see her come around, but slowly slide further into the seizure, with foam and choking. I would pray and pray, calling friends to do the same. Then calling 911.

I was going to share what's going on with Scherie sooner, because a number of you have shown concern, but our son on the sub asked to be notified before I publish stuff.

Geez published a post about belief that referenced Mark 9:17:

Mark 9:17 A man in the crowd answered, “Teacher, I brought you my son, who is possessed by a spirit that has robbed him of speech. 18 Whenever it seizes him, it throws him to the ground. He foams at the mouth, gnashes his teeth and becomes rigid. I asked your disciples to drive out the spirit, but they could not.”

When Jesus healed this young man, He did not bother to lecture the crowd on neurology.

Did Jesus cast out a demon or heal a medical condition?
I don't care.
Jesus healed him.

I'd like to have a miracle cure of Scherie, but I'll take a medical one.

Holy Thursday, Scherie got a call from U of M and Good Friday we went to see the neurologist.

An interesting aside:

I've been asking for a couple years now if surgery was a possibility to remove scar tissue from around her previous surgery of 30 years ago that I believed were causing these worse seizures. I was told that the brain doesn't scar.
I also thought that Scherie's seizures were caused by an excess electrical buildup from excitement or stress that could only be discharged by a seizure. I was told that couldn't happen.

On Friday we were told that due to the testing Scherie had gone through, they had located the scar tissue that was causing her problems. And that it can be removed.

I was asked if I had any questions, and I asked one of the top neurologists at U of M about the electrical discharge idea I had.

He looked at me quizzically, like “Where did you ever get an idea like that?”.
What he said was, “If you were 10 years younger, I'd offer you a fellowship.”, that that was one of the latest notions they were pursuing.

So they showed us the latest MRIs of Scherie's brain.
Instead of a golf ball size of brain missing, we saw that almost her entire right temporal lobe had been removed.
This would be about the size of a small fillet running horizontal behind her ear.

We believe most of her functions that resided in that lobe have migrated to her left side.
The trouble areas are at the forward and rearward parts of the removal area.

The forward part is a breeze we were told. No threat of further damage.
The rearward part approaches her occipital lobe, which controls vision.

Friday, Scherie goes in for some extensive vision testing. Everyone is amazed that she exhibits no sign of loss from what was removed already, but they want to verify that.

A week later she gets a WADA test. I don't know what it stands for either.
What they will do is insert a tube like an angiogram. Put a tube in the groin, up through arteries and deliver a phenobarbital type drug to the right hemisphere of her brain, and see how she does without it.

The hope is to see no difference as she's asked reasoning and memory questions.
They'll then do the left hemisphere.
This will give them some indication of how far they can go.

If they feel that the removal of scar tissue at the rear is too dangerous, they may only do the front and see the results after a while, reserving the chance of doing the rear later.

30-40% chance of no seizures if only the front is done.

Back to the prayer issue.

Jesus said “These only come out with much prayer...”

Obviously we're also using a scalpel.

I'm not backing off the prayer though.

12 comments:

  1. Tell the Doc that you've been haunted by his suggestion that were you younger he'd offer you a fellowship.

    You've been living under such a set of conditions that your engineering skills are a good reason you came up with the questions about scarring and electrical discharge. Maybe that skill can serve the medical community more than they are willing to imagine.

    Say you're available for a small fee to sit in on discussions. Just put you in a white coat and call you a medical tech consultant. I bet everyone wins with that.

    Prayers are sent.

    P.S.
    OMG -- real paragraphs! No more need to insert ¶s. :)

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  2. One of the best things about online friends is that it opens up a whole new avenue of prayers. God be with you all.

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  3. Rita's right...we'll all be praying for you and Scherie.
    Having lost my husband 2 1/2 years ago (that seem like last week), I have to say it touches me how much you love her. I miss that but it makes me smile now to hear about it in others... it helps me remember that feeling.
    I think all of this new stuff they're finding sounds promising for Scherie and I'll be praying for the very best outcome!

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  4. Pasc: "OMG -- real paragraphs!" Thinking of you, buddy.
    Between you and Rita's complaints about my old site (and a couple other reasons) that's why I moved here.
    Mark, Rita, Z: Thanks.
    Z: May God comfort you til you're re-united.

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  5. I will offer my prayers. They are meager in the eyes of the Lord, but heartfelt.

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  6. Ed I was serious about making that offer to the doctor.

    I did a google search on the following terms: portable "reverse osmosis" "dialysis machine" inventor "chemical engineer" but could not come up with the name.

    I did come up with this however: "For example, the artificial kidney, which was developed with major input from Chemical Engineers, is now sustaining the lives of millions of people." Search for that quote and you will find the link to an Aussie article.

    Anyway, here's the story as I recall which parallels that quote.

    The inventor whose name I cannot find had come to the ChE dept at UM circa 1968 to speak to student members of the AIChE. He was an alum who realized that reverse osmosis could be the answer to making dialysis machines more readily available. Prior to his invention, dialysis machines (invented in the 1940s) were the size of iron lungs, few in number around the world. Very few renal failure patients could get access, and so the death rate was quite high.

    This guy applied for and got a patent for his innovation. But he discovered there was a great deal more resistance to overcome. The medical community would not even speak with him. He actually had to get a medical degree, become a medical doctor, before they would even consider his invention. Think of all the deaths that ensued while he did it their way? If I wasn't convinced today of how Incrementalists have long had Neo-Malthusianism streak, I'd still be nonplussed by the AMA's seeming callousness.

    Anyway, that was the story he told us. He was looking to inspire chemical engineers to go into biomedical engineering so that there was another discipline and another institution that might carry some weight for future inventions so that new discoveries did not go unused until their inventors were recognized by the AMA.

    Interdisciplinary synthesis is about the blending of disciplines so that the narrow focus within any one discipline has a chance to get a wider view of things. You were dismissed 10 years ago (or however many years it was when you asked about brain tissue scaring) almost completely because you had no credentials. And yet here it was proven over time that you had insights that are now acceptable in the medical field.

    Think about this story and make your case with the doc. Maybe you can help Scherie more than you know.

    P

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  7. THank you, Ed...my stepson is staying here now and, as happy as I am to have him here, it does bring up all the happy memories. Sometimes, that feels good..other times, notsomuch.

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  8. A little late here.
    I just read this to Scherie, and she thanks you for your prayers, and Z, you are in hers.
    Thanks.

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  9. At time when there's little to offer but a prayer, it helps to know they're never wasted.

    God bless.

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  10. Prayers headed your way.Best of luck.

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