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Thursday, July 3, 2014

I am to meet with a lady at the Franklin Area Chamber of Commerce to see if someone can scan Karen’s medical records. I don’t want to get rid of them in case they may help in CSF research, yet I don’t want to carry them around with me like an albatross from the The Rime of the Ancient Mariner.

She is late, so I head across the street to have lunch. There I meet a friend that I’d lost track of. There are no coincidences in the Universe.

When we finally do meet, she recommended Caldwell Printing Services in Oil City.

After those appointments, I head to the The Derrick, the local paper’s office. I had no appointment. After explaining what I wanted to a couple of different people, I was eventually directed to the editor, Rich Jackson. The Derrick often runs small things in the corner of a page near the back in remembrance of the loved ones that have passed. I wanted one of those on the anniversary of Karen’s death, August 7th, 2013.

Mr. Jackson said they did not do such things for people that die of suicide, as that can lead to copycat deaths, (see: The Werther Effect).

I explained to Mr. Jackson that Karen’s death had actually helped a few people, and inspired one lady to run a marathon. I told him I understood his concern. I asked him to at least read Karen’s Journal. Mr. Jackson said he would read it and would have one of the reporters he thought would personally understand Karen’s story read it as well. I left the office disappointed. What would happen in September, I could not have possibly imagined.

Saturday, July 12, 2014

I thought I might have 10,000+ pages to scan. Once I separated out the bills since 2009, the stack on the left—apparently, Karen got rid of all of the older ones—I was left with the stack on the right that covers 1991 to 2013.

Late July 2014, exact date unknown.

I received a phone call from Ms. Savannah Barr, a reporter at The Derrick Newspaper. The paper had decided to run a story on Karen after all. She started asking me questions on the phone. I suggested that it would be easier for both of us to meet in person at her office, which we did the following day.

Thursday, August 7, 2014

Karen has been gone one year today.

I still cry a lot. I can at least manage to go a few days at a time without crying now.

I check the paper today. There is nothing in it about Karen. I guess they changed their mind about doing story on her.

Is There a Genetic Connection?

Wednesday, August 20, 2014 at 12:06pm

On the CSF LEAKS (Cerebrospinal Fluid Leak & IH) private group, someone asked, “What kind of leaks did Karen suffer from?” which started this exchange between Karen’s cousin, Charity Heilbrun, and I. With Charity’s permission, I am posting our exchange here:

Me: … it is times like this that I really miss Karen. She could have just rattled off the answer to your question. I can’t. I should dig that information out of the medical records. Right now, they are at a scanning service to be put on DVD.

Her accident was a whiplash and head impact. There was never any signs of a cranial leak. We always assumed the problem was in the neck region.

She had some X-rays from a fall at work before her car accident. Those showed a normal cervical curve. After her accident, there was no cervical curve, bones looked like she had a ruler strapped to them they were so straight.

I know she also got some patches in the bra strap area as well as higher.

None of her image studies were ever absolutely definitive.

Her autopsy showed she was leaking at the tip of her Dura. This lead to speculation that she might have had Tethered Cord that her cousin does have. Her cousin, Charity Heilbrun, also has Chirari leading to speculation that there is a genetic connection.

Charity, I recall the discussion that the two of you had talked about your Chirari and Karen wondered if it was pseudo Chirari from a leak. I’ve never found anything in Karen’s writings about Tethered Cord nor recall her ever mentioning that. Did Karen know you had TC?

Charity: I also have Chiari syringomyelia occult tethered cord, basilar invagination and Ehlers Danlos Syndrome [EDS] hyper mobile type… I suspect Karen may have had some of these as well.

Sorry forgot commas.

Yes, Karen and I did discuss pseudo Chiari . . To be honest that is the first I have ever heard of it... there is however acquired Chiari .. the problem is most Drs are under an assumption it is the degree of herniation that is the issue ... and that is FALSE any Chiari, even Chiari 0 is problematic. No we never discussed tethered cord, or EDS. Looking back I would have posed sooo many more questions to her. Hind sight is always 20/20. Karen was always one to ask more about another’s issues more than discuss her own at length. 2 of my 3 kids also have syringomyelia and possibly hyper mobile EDS… so there HAS to be some kind of genetic link. The symptoms are so vague that you almost have to look for them.

Me: Karen could tie her fingers into knots. She did this when she was nervous. Usually in a doctor’s waiting room. Her back was extremely stiff, which doesn’t seem to fit EDS? She said that started as teen, per-accident.

Charity: My back and neck started when I was about 14… I have syringomyelia C3 to L1.. now I am younger than Karen ... not by much, but when they did my first MRI at 14 ... they did not know what they were looking at and said nothing was wrong … it was not until I was 27 and had severe issues and was taken to Pittsburgh by emergency that they figured it out. I am sure Karen’s heds [Hyper EDS?] was worse than mine, but that would explain her leaks ... I have gotten leaks ... but not unless I had surgery. I have a pseudo miningocele (spelling ?) From my brain surgery as well.

Wednesday, September 3, 2014

Today is Karen’s birthday. I had hoped The Derrick would have run their story today. I did not find it. I guess they changed their mind for sure.

Today Paul, from next door who found Karen, said he saw her leaning against the dog fence. Lots of people were thinking of her today. He said she was wearing her pink with black polka dot shorts and red blouse. I asked him if she said anything.

He said “No. She just watched me.”

“Did you talk with her?”

“I didn’t know what to say, so I just told her ‘good night’ and went in the house.”

ARGH!

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