Aaahhh!

So, for the past month or so, I’ve been having a lot of new neurological symptoms, (perfect timing… NOT!), such as really intense headaches, increased ataxia, (or as I like to call it, my parkinsons. For those of you who don’t know what ataxia is, it’s basically a whole lotta shaking), nausea, and speech problems. Plus, I get these REALLY bad hot flashes. We (my fam and I) started getting worried. Since I was going to have a CT scan done for Kenalog and Marcane injections, (Lidocane-like numbing injections) anyway, I figured that anything fishy-looking going on in my brain would show up on the CT. (Side note: I LOVE CT scans! They take like, no time at all! I’m not saying I’m claustrophobic or anything, but there is no reason to feel claustrophobic in a CT scan! I’d much rather do those than MRI’s).

After A LOT of back and forth, more scans, and more waiting with some worrying mixed in, (waiting is the WORST!), my mom got an email yesterday from Dr. Steinberg (my neurosurgeon at Stanford)'s nurse, saying that Steinberg (or Steiney, as she calls him) sees that my 4th ventricle is very swollen, and thinks that I would benefit from a 4th ventricle shunt.

AAAHHH!!! Another surgery and another shunt?! (Shunt: Little device-thingie that drains the excess fluid from your head to your abdomen.)?! Yes, that’s right ladies and gentlemen, I ALREADY have a shunt! I don’t think my head has enough room for two shunts! (I’m kidding. It totally does, but i’m so arguing that!).

I’m totally worried. Not just of the risks, (BIG risks!), but… I like my hair! Vain, I know, but it’s taken me so long to get it even shoulder-length! I guess if they don’t have to shave my whole head like last time, I guess I’m ok with it? Maybe? I don’t know!.. I am praying SO HARD for everything to be ok. All I can say about this whole thing is… Shitshitshi-i-i-t!!!

Lizzie, I am praying for you .
Very astute one word observation/description and summation of this whole thing-a big pile of it…

At least I have saved myself the worry of the hair issue should I ever go for surgery, I have shaved my head for the past 15 years or so. EEG nurses fight over who gets to do my head…lol. You are in my prayers

I’ve tried to convince Lizzie to go with the whole “G.I. Jane” look just to avoid more choppy hairdos following any subsequent surgeries but she just won’t go for it. I don’t know why…she totally ROCKS the Sinead O’Connor look. (As her friends pointed out when Brittney Spears shaved her head a few days after Lizzie’s head was completely shaved, Lizzie put Brit to shame! :wink:

lizzie,
dont worry about the hair…i had my whole head shaved and a massive incision right around the front of my hair line …down inforont of my ear…and massive incisions in the back of my scalp also i looked like a puzzle …i had a wig made…and then i never wore it not once…i wasnt ashamed …i was proud of what i had been through and survived …hair grows back i know it takes time but really its only hair and if it does bother you a heap you can always get a wig…yoiu are in my prayers …stay strong girl…keep positive xxx

Lizzie I love your sense of humor through this whole thing. It’s so helpful! And really, hair is so over-rated anyway! I am one ugly chick without hair, so I was quite distressed to wake up and have my whole head shaved. Alas, it does grow back and mine grew back a different color and curly! Good luck going forward. You’re awesome!

I will pray that you get good news tomorrow. NOT FAIR AT ALL…grrrr… and if you’re sad about your hair, I think that’s valid. How would I know what it is like to lose hair? I don’t, but I’m sure it’s the last thing you need when you are trying to feel better. and you are SO right that waiting is the worst. In the beginning, I used to wait patiently but now I’m on the phone every day until I get what I want. I’m sure your mom is the same.
Lizzie, I honestly do not even know what to say except, I am thinking of you and I really really really hope you get better news tomorrow. I am thinking of you right this second and my heart hurts. :frowning:

How are you feeling today? Wish you to do everything fine.
What a strong woman you are…you are a fighter!
You are in my preyers…

Lizzie,

After seeing your video and yes, being a patient of Dr. Steinberg's, I feel like I ought to know you! :)

So sorry about your latest - just isn't fair!!

You are in my best thoughts,

Patti