Seizures again

Okay, I'm proud to report that I'm not bat shit crazy.  I talked with my neurologist just now and he confirmed that he thought I am probably having focal seizures.  He wasn't surprised this happened after the hematoma.  

So, I'm going to be adding in a new medicine and then after I get up to the full dose on that, tapering off of Keppra.  

We chose to do this instead of just increasing the dose of Keppra because of mood issues that can be associated with K.  He asked me if I've had any mood changes or depression.  That's really a trick question for someone who's had brain surgery!!  

I said, "well, yes, I definitely have good days and bad days and I do get blue, but it's hard to know if it's just from everything I've been through these last couple of months or the medicine." In hindsight, my crying outburst in Dr. Shaprio's office could have been a clue!  :-)

So, we both figured it wouldn't be a bad idea to try the new med and see how I do on it.

I just hope that it stops my terrifying dreams where I can't breathe, because it's gotten to the point where I'm afraid of sleeping at night.  Seizures can suck it.

AAK (All About Kevin) Post

So, even in this craptastik economy, my husband found himself a new job!  I haven't written this earlier because I'm so paranoid about these things, but since it's his first day, I thought it safe to write about!  

I'm so proud of him!!!!  He's going to be managing the product operations group for a cool company called ExactTarget.  You know those emails you get from the big retailers?  Well, chances are that ExactTarget manages it and works with the companies to maximize their marketing efforts.

So, help me congratulate Kevin!

More Seizures??

Since my 2nd surgery, I've had some interesting symptoms pop up:

• Terrifying dreams in which I cannot breathe - like I'm having a nasty, nasty asthma attack.  I don't wake up during these dreams (I wish that I would), but all I know is that they are TERRIFYING.  I thought it was either my allergies acting up or anxiety from the last couple of months (both are very plausable explanations!)
• My tremor in my left hand has returned noticeably.
• My right eye has been twitching on and off most days.
• I smell a popcorn smell on and off all day even when there is no popcorn around anywhere.

I told Dr. Shaprio about the tremor and twitching and really didn't get a response.  I just thought that it's part of the healing process.  Which, to Dr. Shapiro's defense, is probably pretty normal healing stuff.

But taken together with the other symptoms, I really think that I'm having partial seizures, based on some research that I've done. I've got a call into the neurologist, Dr. Snook, to see what's going on and to see if we can resolve these issues.

YET ANOTHER REASON WHY PATIENTS MUST MANAGE THEIR CARE.  When you know something isn't right, don't give up.  And I want to get this figured out before the proton therapy starts.

Tiredness Part III

Yep, old man groggy is still with me.  Can't shake it.  I'm also out of breath in like 2 seconds.  My head is healing well from the marker surgery, but it's still sore.  Now my left side of my head feels numb.  And it's like, "hey, I didn't have a tumor, why are you infiltrating me now?"  With proton therapy, you're part of the team now, left side of brain!

I've noticed that my tremble on my left side is coming back slightly.  That's kinda annoying.  But the pressure in my ears continues to do really well.  I'm constantly hearing popping noises and weird things at night when I go to bed.  

More poking, prodding and radiation!

Kevin and I got back from Bloomington this afternoon.  Yesterday was a fun-filled day of bloodwork, x-rays and yet another MRI (with dye contrast) in preparation for the 'fiducial' placement operation today.

Instead of having the usual external 'tattoo' on the skin that goes along with radiation (indicating where the radiation beam is focused), proton therapy requires fiducials - a.k.a. markers or bb's (as in bb gun) - to even more precisely focus the beams.  These fiducials are placed on the skull and are about as big as a pin head.  I will have them for the rest of my life. They are MRI compatible and I shouldn't set off any alarms at the airport.  

So, yes, I had to go under general anesthesia again today.  3 times in 2 1/2 months.  I hope this is the last time ever!  I'm exhausted.

I was also lucky enough to have yet another CT scan (with dye contrast) after the surgery today and even more x-rays.  I think this officially puts me in the radioactive category!!  It's kind of scary.  I've had 4 MRIs since January 09 and 7 CT scans since December 08.  Most of them included the dye contrast, too.

The picture above shows 2 fiducial placements.  I have 4 all together.  While not a big deal, they are kind of sore, and in the most inconvenient places ever.  One is right behind my right ear exactly where my glasses lay.  Niiice.  And they used my previous scar from the first surgery to insert the one smack dab in the middle of my forehead.  Double niiice.  

The others are on my right side just outside the skull flap (the part of my skull that they removed in the first surgery), and the last one is actually on the left side of my skull farther above the ear and back just a little bit.

But the GREAT NEWS is that I am on closer to getting back to normal and I am just excited to get the treatments started.  We're still looking at the initial meeting with the Doc down at MPRI on May 13, with the first official treatment on May 14th.

Progress!

Moving forward with original MPRI schedule this week.  It's kinda been a cluster trying to get all the docs on the same page, but it FINALLY happened today, I think in large part to Dr. Mark Henderson.  

Wednesday, Kevin and I will go down to meet the neuro team who will literally put the screws in my head.  Then I will meet the MPRI team who will treat me.  Good times.  Just hoping for no more complications.  

Still looking at first treatment date of 5.13.  Let's hope these next 2 1/2 months fly by.  I am so ready to be completely done with this drama.

Will post more from Bloomington on Wednesday/Thursday.

Still Waiting

Met with Dr. Shapiro yesterday for follow up.  He took out my staples.  Told me it wouldn't hurt - and he lied.  Has he ever had a bunch of stitches or staples taken out of his head?!  Yesterday's stitches removal hurt almost as bad as the staples!!  My head is so sensitive!

He took another CT scan yesterday to see what was going on.  Thought I would hear back from his office today, but I haven't yet.  Of course, we got the CT on CD (like that one?!) and we looked at it yesterday.  From our non-professional view, everything looks pretty good.  My brain looks like it has totally expanded back into place.  Amazing!  Now, if I can just figure out why the heartbeat and windstorm in my ear is still raging....

He's thinking that I might have to delay the start of proton treatment and was going to consult with Dr. Johnstone down at MPRI.  I will be bummed if I have to wait even longer.  Ugh.

Good news is that my appetite seems to be returning and the numbness on my left side seems to be subsiding.  But like the weather in Indiana, just wait and it will change...(can you tell these last 3 months have made me a little cynical?)

I took an awesome 2 1/2 hour nap today.  But I did manage to get out in my garden for about a half hour to pull some weeds!  Making progress.

Let's hope I hear back from Dr. Shapiro's office tomorrow!