I've been missing, but lots of good news!

Well, my friends, I’ve disappeared for a short while, I blame my strange bouts of anti-socialist behaviors on my Chiari’s, and a side issue we had arise in the family, that has since been taken care of.
But I return to you bearing great information, news, and happy happy feelings!

I found an amazing Neurosurgeon, who he, and his partner, have over 30 years of ACM experience!!! I was recommended to Dr. Balis in Tampa by a friend who knows him personally. I’ve been to a few visits with him now and oh my goodness! He’s very knowledgeable, a straight shooter, and doesn’t play the typical NS games that I’ve been going nuts with.
I’ve found many favorite things about him, but my number one favorite was when he asked for all of my MRI slides and disks, and didn’t want the radiologist’s reports. He wanted to review everything himself. I guess he teaches at USF, and wanted to not only review them, but review them with others! I love that exposure!
And then he noticed that my initial MRI did not have the Coronal slice… well, in just a few minutes, he found out that they no longer do those slices standard, but was able to get me in (no charge) right away to get one done! He’s QUICK!
We’re moving forward with the surgery (WOOOHOOOO), but I have elected to wait until early June, so my kids will be on summer break and can help take care of me in my down time.

And then, AND THEN!!! Dr. Balis’ partner, Dr. Lewis called me today and asked if I would mind taking part in a medical study. Since all of their other ACM patients have already undergone the surgery, he asked if I would volunteer for a specific test to be done (at no charge to me, of course) which may help future patients to be diagnosed earlier, quicker, and more accurately. I am elated to be part of such a study. I look forward to being the test monkey on something like that! I do that test tomorrow, on my lunch break :-)

So that’s what’s new with me. Still having all the symptoms and pains, problems and upsets… but knowing that I have a surgery coming up makes it easier to bare (most of the time).

[*Stormy*]

That's Awesome!!!!! I'm so glad to hear that you will be participating in a study...and have DRs that care enough to learn. I am so very happy for you.... :)

Glad that you are back too!

Carolyn

[selmaS]

WOW !! Fantastic....this is really great news...may I ask , if u can ...keep a journal of what they do and how u respond...it would be interesting for us to follow u as u go thru this study.

I am so glad u found someone u r comfortable with and has the needed experience, plus is doing research to help all chiarians!!

WHOOOOOOOHOOOOOO

"selma"

[cyberpyxi]

Carolyn, thanks, I'm glad to be back. I hate when I go through my anti-social phase. I miss everyone! And oh my goodness, fate was shining down on me with finding these doctors!
Selma, I'm happy to!  Today, I underwent a Trans-Cranial Doppler study. It took all of a few minutes, and I should hear what, if anything, it shows them about Chiari's on April 15th.
So as to not sway the results, I didn't take any meds yesterday or today. I was SO glad to be done with the test, just so I could take my two that keep me sane and functional! I had to take a Midrin (for when I get the CF Headaches), and my Baclafen. I sometimes forget how bad I get without my medication, but thank goodness I have them!

Will update what I've learned from the NS's when I hear more!

[selmaS]

No worries...many chiarians go thru times when they do not feel very social....it seems to be a normal stage....I also think it is pain that does it to us.....U r so lucky u have meds that do nething for u...nothing worked for me pre surgery.

I hope u stick around a bit  ....and update us after u get the results of the tests....

"selma"