Sunday, March 23, 2008

Some of this and some of that.

Well, I did get my new Marlin brace on Thursday, but it wasn't worth the wait or traveling. It's thrown into my closet (the orthotist said it was non-returnable). I must have different stability issues than my online friend who recommended it. This new brace hits me on the back of the head where it really hurts...it has zero stability side to side....and it digs into the top of my chest. Oh well...I'll stick with my old Aspen.

There just hasn't been much to report, really. I have been making travel arrangements for us to go to our son's wedding in September. He's getting married 1000 miles away, nearer to where he lives, but no matter how bad traveling makes me feel, I am THERE!

I am toying with the idea of starting a Christian online support group for those with Chiari, syringomyelia, basilar invagination, arachnoiditus, Ehlers Danlos Syndrome, and/or traumatic issues like I have. Because of this broad base, I have no idea what to call the group. I have already heard from people who are very interested in the idea of a place where we can be open in sharing how the Lord helps us get through these things.

I went for a walk today during a pause in the rain. The scent from the damp forest was heady and evoked many memories for me. There was also a tinge of smoke from someone's wood stove. The snow-melt creek has gone down about a foot because we've had some cold nights, thus it no longer roars down through the canyon bottom. It is much more polite, burbling its way to join the river, and this change is calming. I came home from my short walk and could feel the uproar in neurological stuff caused by the exercise. I suppose I'll again be paying nature's fiddler tonight. But it is indeed worth the price.

Really, nothing is happening here now. No doctor appointments except the follow up in New York in May.

Oh, I did want to share something the orthotist said. I found it to be enlightening. She only speaks when spoken to, and then very little, but I did glean this information from her.

I told her that I need something to steady my head and neck because of skull-base nerve compression. She said that most people come in there for a neck brace because they have recently been injured. Their necks hurt when they move so they instinctively keep things as still as possible. The braces really serve best as a reminder to keep things quiet.

In my case, I don't have a lot of pain when moving my head or neck. I get wicked neurological symptoms from the action of it and it will be pain (later on) and it also causes problems with breathing, swallowing, paresthesias, weakness, nausea, dizziness etc. All from nerve compression.

The orthotist said no brace, not even a CTO, will keep things so still that there will be no nerve compression. Only a halo will do that.

After my years of dealing with this, I see the sense of what she is saying. Yes, the braces help and they help a lot. But they cannot negate or prevent ALL nerve compression. That puts things into perspective for me and helps me to know that I probably can't find a brace that will do what I'm hoping or that would make up for the lack of a craniocervical fusion.

So, we live and learn.

thanks for reading!

1 comment:

Zoe said...

Hi Darlin'
Gee, :( sorry about the neck support news... I guess similar things could be said for me- and somehow ~life~
will go on and the Lord will continue to take us from glory to glory~ on our journey there-
(in a halo?)::)
(I've never actually seen a pic of one, but it's ironic- the name - )

I love the idea of a Christian group for the {group of disorders that's hard to define} but have several friends I think will be interested too.
Many big hugs my love,
zoe