Hi! In the last 2 years, I've had 3 brain surgeries and one GK. At my recent annual MRI, the doc called me after reading the radiologists report and said the tumor looks like it's still growing!!! He's going to consult with the GK doc but I'm thinmking I'll ask for another MRI in 3 months. Here's my story (sorry so long):
I originally had surgery on Jan 08 for AN resection - retro (approx 3.5 cm) at Virginia Commonwealth Hospital b/c it was the best option that took my insurance at the time. I was 32 and otherwise healthy. The docs thought they got 80% out. I was totally back to normal w/in 4 wks; it was great! The only consequence is that I lost hearing in my right ear.
When I had my baseline MRI done (3 mos post surgery), it was either growing or they didn't get as much. So they recommended GK. I switched to University of Virginia (just started taking my insurance) and had GK in Aug 08. The docs were already on the fence b/c of the tumor size but I had it done anyways. I was running again in 3 days; it was walk in the park compared to surgery.
Well, as you know, you are supposed to have an MRI at 6 mos and then 12 (annual after that) but I started having severe pain in my right ear and headaches. They put me on steroids and recommended an MRI - even though it had only been 4 mos since the GK. The docs said to expect swelling from the GK but my tumor was now pressing on my brain stem and had to come out! I was thinking after Christmas (this was last Nov) but the docs said NOW! So I had surgery again Dec 18, 2008. The plan was to debulk and then GK again. This time I a woke to facial palsy and had trouble walking. I had to use a walker in the hospital. I went home walking but the facial paralysis persisted (FYI - the doc said they did not severe my facial nerve). The post-surgery MRI indicated that 95% of the tumor had been removed.
After 4 wks at home, I discovered I had a CSF leak and had surgery again on Jan 12th. The worst part about it was that the spinal tap didn't work and they had to do again while I was awake! I also had to lie at 50 degrees for 5 days (it was better than on my back!). Because of the additional MRI's, the docs actually changed their initial reading to 99% of the tumor removed. I was told that because so much has been removed, I wouldn't even need GK unless it showed signs of growth over the years.
Around 6 months post-surgery, I started noticing some muscle movements in my face - WOOHOO. Today I'd say it's about 80% back to "normal". The right side of my body/motor skills is about 90%. The best way is to describe this that I can no longer type using the standard set positions. My right hand moves a little slower than it used to. My balance is off a little but not bad: I can’t run on a treadmill.
Well, my annual MRI images looked quite different than what I was prepared to see... my surgeon showed me the images from after surgery and the present. It looked more like 70% vs 99%. I was a little shocked. Additionally, I had a difficult time doing any type of comparison b/c the tumor had changed shaped when it collapsed. After the radiologist report came in, that is when my doc called and said they think it's still growing!!! BTW - it looked like 1 cm was left in there.
So I'm not ready to jump into anything again. If they suggest GK, I might wait 3-6 months and have another MRI to see if that one also shows signs of growth. I'm obviously worried about cashing in my last chip with GK. After I use that treatment, I'll have to have surgery again if it keeps growing and I feel like the complications would be more severe this time.
I feel like every time things start going well, I turn another corner with unexpected surprises!! Anyone with a similar story?
Thanks for letting me vent
Allison
