Moving Along...

We saw the neurosurgeon in Madison again on Thursday. He did a new brain MRI on Anna, and he said it looks good. Very happy to hear that, one year (almost to the day) from her last surgery to repair the CSF leak in the back of her skull. It means a lot, because he is one of the leading experts in the country.

He had her fitted for a soft cervical collar. Still trying to see if she gets improvement from something like to to help rule out craniocervical instability. She will put it on today. She needed a break from trying things after traveling twelve hours to the appointment on Thursday. Plus the weather has been terrible. Better today, hooray for the Midwest.

He also wants her back on strict bed rest (no getting up). But instead of having her head flat, he wants her head elevated thirty degrees. Because she improved during the recent bed rest laying flat, he wants to test it this way to see if she improved because of position or because she didn't get up. She is happy to do that. He said do it for three days.

He is thinking intracranial hypotension (low pressure). He wants her to see the neuro there who knows about low pressure. Working on getting that appointment. I was told his first available appointment was the end of July, but hopefully something can change to get us in sooner. Plus we will see the nsg at the same time.

He is really thinking things through, being conservative, and that is all good. What a good guy he is to TRY and help, even though it has been going on so long and is so complicated.

Cheryl

Words written by a mom today on her daughter's CaringBridge Site:

"This is a really tough problem. If it were easy, it would have been solved a long time ago."

I sure can related to that.

The same can be said about chronic migraine disease.

Cheryl

Cheryl,
You always have hope. That's so important and encouraging for all of us. I wish the best for both of you.

Anna

Cheryl,

I hope you have success with the soft collar. Thought still irritating, it is much more comfortable than the hard collar.

Hugs, Charlotte

So far, not good.

Cheryl

I was afraid it would still rub on and irritate her scars. Even without the scars I remember it chafing a great deal.

I started college wearing a neck brace. For the next four years it was , "Oh, yeah, didn't you have a neck brace?" I have one picture where I'm sitting on the couch and had taken my brace off. After a couple beers my head was definitely cocked to the left where I didn't have the muscle control to hold it up. Oiy.

A phone call from the neurosurgeon's nurse this afternoon. She said to trust Anna's instincts about the collar. If it makes her feel worse, the nsg will probably understand that. If it hurts too much, don't wear it.

The nsg had extensive conversation with the neuro. Neuro decided he probably didn't have anything to offer. So no appointment with him.

Anna will start bed rest after her neck and head settle down from wearing the collar. We'll record the results from that, see the nsg in three weeks, and maybe talk about doing a dye study.

A plan--how I appreciate a plan!

Cheryl

I love it when there's a plan.

Does Anna get carsick? I have severe trouble with carsickness...Have to take a dramamine or two if I'm not driving and lately, I haven't been driving...

Not easy for her to ride in a vehicle. Probably a combination of bad stuff happens.

Cheryl