Saturday, July 11, 2009

How Sweet It Is!

I have been remiss in blogging about my post-op TCI followup appointment I had back in May. Here's my latest Brain Tail photo ~ wow ~ they really did do something to my brain during my 7+ hour brain surgery! You can compare this one with the one on the side bar ~ notice all the extra room in there!

With that said, here's what the good docs at TCI had to say with the progress I have made since my decompression. First off, I am healing quite well and although not up to full strength yet, I am getting there faster than most patients. Also, most of my symptoms are completely gone except for the low barometric pressure headaches, which I am learning to deal with.

Now for the not so good news ~ I guess when you are facing brain surgery, the docs only focus on the task at hand instead of overwhelming you with your bleak lifetime outcome. Sigh ~ So, now that brain surgery is out of the way, I was told that I have degenerative disk disease and stenosis. Translation ~ I will probably be dealing with chronic pain in my body for the rest of my life. Sounds pretty bleak, but I am fighting this with every ounce of strength in my body.

I guess EDS is showing how destructive she can be ~ Honestly, I am so thankful to be alive, to have survived brain surgery, that everything else that may be just around the corner is cake. So I am focusing on increasing my bone density, working out and getting stronger. The bigger picture of living with CHIARI is coming into focus ~ it's a lifetime battle, but thank goodness I am not at risk of having a stroke or paralysis any more. All you brain tails out there ~ the sisterhood/brotherhood of the traveling brain tails make traveling on this crazy journey so much sweeter. 


Molly said...

Your brain looks good!! So glad to hear you are doing well(sorta):>)

By His Grace said...

What a beautiful decompression, Lacie!!! I mean it! God is so good! I'm so happy for you, tho sorry you got a less than stellar prognosis...but with God, all things are possible. As you say, you survived the surgery, a big Hallelujah is in order!

hugs and love

Patti said...

Awesome pic!!! Happy for you Lacie!

Jai said...

What a crazy sexy brain pic! Lacie, if anyone can face this challenge, YOU can. And you have lots of love and friendship all around to gather even more strength from. XOXOX Joely

Anonymous said...

I'm am scheduled for surgery Aug. 11 and I am very scared and would love to have someone I could talk with that had the same brain decompression. I hope I don't scare you off, please call if you can. 734-757-3636

lace1070 said...

Lisa ~ I would be more than happy to call you and talk about your upcoming surgery. I think alleviating the fear of the unknown is half the battle. Would u mind emailing me at and let me know a bit about your chiari journey? I look forward to chatting with you soon ~ Hugs ~ Lace

The Gyrovague said...


I found out I have stenosis and I have arthritis in my neck caused by carrying a hydro-cephalic head around all my life. It sux, but yes, as you say, much better then the alternatives.

Hang in there my sister of the brain tail..

I may be up your way early next year and If I come would love to by you coffee!