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!

Infection?

Oh, one more thing I forgot to add.  I got the dreaded phone call from Dr. Shapiro's assistant on Thursday.  Apparently, I had a 'late growth' on the culture that was taken when they drained the hematoma.  Dr. Shaprio seems to think that it could have been contamination.  And I'm not sure what day after surgery this 'growth' appeared.  Usually they only culture it for 5 days...so not sure if this was on the 5th or 6th day after surgery.

I'm now back on antibiotics for 6 days.  I'll find out from Dr. Shapiro on Wednesday what to do next.  Mentally, I'm preparing for having to have a pic line for a month.  And hoping that's not the case.  Definitely a big bummer.

Proton Therapy Schedule

Finally heard from MPRI!  Here's the deal:

Wednesday, April 22

Meet with neurologist in Bloomington and pre-op bloodwork at Bloomington Hospital.

Meet at MPRI so they can make the mask that needs to be custom-fit for treatments.  Meet with care team.

Thursday, April 23

Surgery (yes, another surgery!) to implant markers that will help guide proton beams.

Another MPRI meeting for more bloodwork and mask stuff (I think!)

Wednesday, May 13

First proton beam treatment and meeting with Dr. Johnstone, who will oversee my treatment

Quick update

Finally starting to feel better after the second surgery.  I managed to clean out my work email inbox and do a little work for a couple of hours today.  It was nice, but it did wipe me out!  

I continue to be extremely tired, and my appetite is awful.  I feel like I've eaten a 5 course meal all the time.  Which makes it difficult to even shove anything down my throat.  Luckily, yesterday I could actually eat quite a lot in comparison to the past week.  Maybe that was my mom's great Easter cooking!  

I'm also feeling numbness and pain in my left arm and left heel.  It's strange, but probably just part of the healing.  It's something I'll ask Dr. Shaprio when I see him on Wednesday.  I'm getting my stitches out then!

Public Service Announcement

The hole in the middle of my skull is the Burr Hole they made to drain the hematoma.  The string coming from it is part of the drain that they kept in for about 24 hours to make sure they got out all the fluid.

My hematoma was the exact same kind as the one Natasha Richardson had: an epidural hematoma.  Only mine just had fluid and presumably hers had blood.  It develops in between the dura (the protective layer surrounding the brain) and the skull.  They think mine developed just because my brain had so much space to fill and didn't fill the space as quickly as it needed to, and so fluid ended up building up.   And I'm glad that it wasn't a subdural hematoma, which develops between the brain and the dura.  That would have meant that they would have had to go through the dura, which would have presumably just made the surgery that much more traumatic.  I'll take whatever luck I can get at this point in time.

But....had I not gone to the ER last Monday night and gotten a CT Scan, Dr. Shapiro wouldn't have known by the MRI I had on Wednesday (about 36 hours later) that the fluid build-up had almost doubled within that short period of time.  That's why he wanted to operate within 24 to 48 hours.  Time really was of the essence.

So, please, always go to the ER if you are barfing like crazy and have a headache, especially if you've bumped your head recently!  I felt stupid at first, but boy, am I glad I went!

Frustration

I am sick of laying on my left side.  I can't go outside because it's so windy and cold and that makes my sutures hurt.  And I'm still trying to get everything sorted out at MPRI with this latest delay.  At this rate, I'll be lucky to have the proton therapy done by the end of summer.

This latest setback really has me bummed out.  I just wish it was over.  I'm beyond frustrated and I just want my normal life back.  

When I was in the hospital, I did get to reconnect with one of my old nurses, Jason, when I was in the hospital.  He was my first nurse and helped me through that seizure I had in the room late in the day of my first surgery.  This time, when I kept crying to the neuro residents and to Dr. Shapiro about how much pain I was in after the surgery (and I really WAS crying), he was very comforting and patient with me.  He reminded me that having two surgeries so close together is very tough.  Even Dr. Shapiro was trying to comfort me.  

Kevin was his usual awesome self through this latest ordeal.  And Kevin's dad, Eddie, was also awesome.  He came up to help take care of the kitties (and Kevin).  And he was the perfect visitor right after surgery!  

When I was transferred out of the neuro ICU and into the regular ward, I had 3 roomates in a 24 hour period.  One older lady had just been diagnosed with pancreatic cancer, and was going to have surgery on April 27th.  Another just had half her pancreas taken out and was in a lot of pain - and in for a long recovery.  I guess compared to these two, I shouldn't complain...

Back Home Again!

Hey everyone,

It's me again.  I'm doing really well and feeling better than I have in weeks.  I little fluid on the brain never does a body good!  I'll post more about this hospital experience in the next day or so.

Jenny

Hospitals can suck it....

Finally going home with my wife.







Regards,

Kevin Siminski

(Sent via a Blackberry device)

For better or worse, in sickness and in health.....

Anyone seen the mug shot of the sham-wow guy? Note the striking resemblance.



Regards,
Kevin Siminski
(Sent via a Blackberry device)

13 round box match

Jenny's record 2-0. The first bout while much longer was an easier recovery. This bout has taken its toll. As you can see she is much more swollen around her right eye. But at least no one took a bite of her ear!

She is feeling much better this morning. Dr shapiro just stopped by and said we are just waiting to hear from the lab on the culture report. There has not been any sign -yet- of infection in the culture samples and if they come back clean in the next few hours jenny will be discharged. Dr shapiro indicated that if the cultures remain negative for 48 hours they will usually stay negative..... Fingers are crossed!



Regards,
Kevin Siminski
(Sent via a Blackberry device)

Ultimate bed-head

Jenny is doing MUCH better now. She ate some oatmeal and she took a short walk around the ward!


Regards,
Kevin Siminski
(Sent via a Blackberry device)

Who knew?

It seems that when you get a small hole drilled in your skull the post surgery recovery is worse than getting half your skull removed! Jenny feels a lot worse than she did after her first surgery. I suspect the fact that she is not loaded up with steroids to control swelling etc etc makes her feel much worse.
While she feels worse now, her ct scan however confirmed that the fluid build up was completely drained- so everything looks good up top! The cultures that are being performed on the fluid will probably take another 12 hours before they can see if there is an active infection. Fingers crossed that they turn up negative.

I think they are going to move her out of the neuro icu later this morning. I send out an update later today.



Regards,
Kevin Siminski
(Sent via a Blackberry device)

Very groggy but okay...

Hell I'm tired as well...

Regards,
Kevin Siminski
(Sent via a Blackberry device)

Old stomping grounds

Well she is back in her old ward from the last visit. She is very groggy and in a little more pain compared to her last visit to the neuro-ward. They have a little drain placed under her dura to relieve any fluid that might develop. Nurses are doing a great job as usual!



Regards,
Kevin Siminski
(Sent via a Blackberry device)

Surgery went well

Just spoke with dr shapiro and they just had to place a small burr hole in her skull to drain the fluid. It wasn't all blood but more of a fluid mix. They sent it off the fluid for a culture to see if there is an active infection. If there is she will have to have a pic line inserted and then we will administer antibotics at home for several weeks.

Regards,
Kevin Siminski
(Sent via a Blackberry device)

Out of surgery..

Should be hearing from the doctor shortly. She went under around 1130 and they just finished up.

Regards,
Kevin Siminski
(Sent via a Blackberry device)

Hello members of the jenny fan club

Well the clock is ticking once again. Jenny was just taken back to the OR. Her spirits were high and she was smiling. More updates to come as I get them.



Regards,
Kevin Siminski
(Sent via a Blackberry device)

Funny Story

Here's a bit of humor for everyone:

After learning from the Wizard that I was going to have to have this hematoma drained, I dared to ask,

"So, is this, like, an outpatient or inpatient procedure?"

To which the Wizard replied, while looking at me over his glasses in a fatherly and definitive manner,

"It's an inpatient procedure."

I then realized my stupidness, because given that he messes with brains and skulls all day long, I doubt that any "procedure" that he performs is outpatient!

A bump in the road

Well, we have hit a small bump in the road.  As previously mentioned, Jenny has been feeling pretty fragile over the last seven days- wind in the ear, pressure buildup, headaches. Ohh.. did I mention puking?  

Yeah, so on Monday we made a trip to the ER around 10pm because she could not keep anything down.  After hearing all of the stuff about Natasha Richardson we decided it would wise to make a trip down to the ER.  They did a head CT and did not find anything conclusive, just a little 'fluid' that they did not seem to be concerned about.  She did make a fresh vegetable juice earlier in the evening with some questionable greens! They did not smell too good... so we thought maybe a touch of food poisoning  might have been the culprit! So they gave her some medicine for the up-chucking and she felt much better and we were back home by 130am!

This morning (April 1) we already had a MRI scheduled plus a meeting with her neurosurgeon. Dr. Shapiro indicated that  in comparing the CT scan from Monday and the MRI from this morning it looked like the fluid buildup had grown.  Guess what that means? Another surgery!  So yes, Jenny is scheduled for another surgery Thursday (tomorrow) morning to drain the hematoma that has formed.  You can see it in the MRI image above.  Dr. Shapiro said that it would take him about 15 minutes to do the procedure but we should plan on about an hour from start to finish.  Unfortunately she will probably be in the hospital again for a day or two.  We asked him if this was normal and he indicated that it was "abnormal" but given the size of the tumor he was not shocked that this happened.  This should help her feel much better!  Anyways, we have to be down at the hospital by 9am with surgery scheduled for 11am.  Of course this setback will delay the proton therapy treatments but hopefully it will help with Jenny's overall well-being.

I will send out an update tomorrow as I find out more.