Saturday, January 31, 2009

The confirmation...

January 16th, 2009.  Finally our appointment with the ENT.  Jenny thought I was nuts going with her but I knew I needed to be there.  We go back into the exam room and we were waiting for the doctor.  I heard some noise outside of the door and the Doctor was discussing our case with her intern.  I heard her say "meningioma" finally a professional confirmation and relief.  She came in and said, "Well it looks like you have a benign meningioma".  We need to get you referred to a neuro-surgeon to see what needs to be done.  After the initial shock had worn off the doctor said, "Jenny do you know a neuro-surgeon that you would like to see"?  I immediately responded, "Dr. Scott Shapiro".  My wife's jaw hit the floor with shock and amazement.  Jenny said, "What.. huh... how do you know this dude's name" and I responded, "I had a week to due my homework" at which she responded, "Unbelievable, of all things a freaking brain tumor". 

While the week leading up to this appointment was stressful it was also really nice to be prepared.  So many folks walk into a doctors office and get completely blind-sided by a diagnosis of this magnitude.  Instead of thinking about what doctor you need to be referred to, you are thinking about how long am I going to be alive!  Thinking about yet another doctor appointment is the LAST thing on your mind.  You could just as easily shake the magic 8-ball to get a doctors name! 

So we finally left the doctors office and we both went to work.  The ENT called later that afternoon and confirmed an appointment with Dr. Shapiro on January the 14th.

Researching fool or better yet a fool researching....

After the initial shock had worn off, I decided that I needed to be as informed about brain tumors, symptoms, prognosis, treatment, and recovery.  I had one week between the MRI and a followup appointment with the ENT to find out what was going on.  Of course, I already knew! But I had no idea what this tumor was.  

I can honestly say, the first thing that comes to mind after seeing such an image, is just a overwhelming sense of fear.  I was absolutely powerless to help my wife.  I had no idea what she was about to go through.  So I made it my mission to educate myself as much as humanly possible.  I had one week to figure things out.  

The automatic reaction to seeing and realizing that something is growing inside a skull is not a fun reaction.  However, I needed to dig in and start figuring out how I could help.  I started with wikipedia and looked up brain tumor.  There were some general descriptions about the different types of tumors and being the optimist I followed the link to Meningioma (follow link to read description). I was immediately struck at how similar the image from my wife's head looked like the image of a meningioma... finally a little bit of relief.  

I began searching google images for Meningioma tumors and I became more convinced that this is what was growing inside Jenny's head!  The majority of these tumors are benign and usually can be removed completely depending on the location.  There are a few options for treatment- Gamma Knife, Radiation therapy, and surgery.  The course of treatment depends on the size and location.  Fortunately, in Jenny's case this tumor is located in the best possible location.  It's called a convexity tumor and is located on the upper right hemisphere of the brain (the images look like it's on the left, but it's actually on the right side).  It not wrapped around optic nerves and all that really important stuff deep inside your head! 

The tumor is not growing within the brain tissue but rather growing into the brain.  If you can imagine pushing a baseball into a large sponge then you have a good idea of what is happening inside Jenny's head.  These tumors originate and grow from the dura that wraps around the brain and spinal cord.  They are more common in women (almost a 2:1 ratio of women to men) and a lot of research indicates that these type of tumors have receptors for progesterone and estrogen.  Some pathology reports indicate that these types of tumors look very similar to fiberoid tumors that can grow inside a uterus.  While I was not 100% sure what we dealing with, I was fairly confident and much more relieved at this point in time.  

So the next question, if you have a tumor than who should treat it? I did some simple searches on google for "top neuro-surgeons in Indianapolis" etc. etc.  I immediately came across the name Scott Shapiro.  He is the chief of neurosurgery at Wishard Medical center and a professor of Neurological Surgery and Indiana University Medical School.  He also happened to be the surgeon that operated on Lance Armstrong's brain when his cancer metastasized into his brain. I also spoke with another Doctor that is in my furniture/woodworking class and he spoke very highly of Dr. Shapiro.  So I had the name of surgeon that seemed to fit the bill.

Monday, January 26, 2009

Just another ordinary day

January 9th started out like any other normal day.  Get up for work, feed the cats, etc. etc.  I worked from my home office all day on Friday. Jenny got home from work later that day and I was immediately interested in seeing what a MRI of a brain looked like.  The MRI were a series of films containing a series of "slices" thru the X and Y axis of Jenny's brain.  There were also a set of images that were enhanced by a dye that was injected during the last set of films.

Of course, I manage to pull one of the films that was enhanced by dye and I held it up to a light and immediately I realized something was not right.  I said to Jenny, "that blob isn't supposed to be there" and she responded with a wave of the hand, "Oh Kevin, that is just the dye, you're on crack you don't know how to read a MRI.  If it were anything more than that, they would have said something".  So for the moment, my anxiety subsided but I just had a nagging feeling about the images.

So, we decided to go grab some Sushi for dinner for one of our favorite restaurants.  Well, I barely touched my meal and this nagging feeling was continuing to grow about the images that I looked at.  I tried to sleep that night, but I only slept for about an hour.  I just tossed and turned all night long.  I got up early Saturday morning and started to look on the internets looking at MRI images of the brain.  I also read the entry on wikipedia for 'brain tumor' and got even more worried.

I have a few of the images of the tumor in the slideshow.  The tumor is approximately 5cm x 5cm x 4cm.  No wonder Jenny has been having a headache!

A little bit of history

Beginning in the summer of 2008, my wife began experiencing conditions from the typical allergy season. Also being co-inhabitants of a home with three wonderful little cats does not help with sneezing, watery eyes, etc. etc.  The symptoms that my wife began experiencing were: 
  • Pressure in the both ears
  • A sensation that the Pacific cean was roaring within the right ear/ what sounded like a HUGE windstorm in that same ear
  • Ringing in the ears
  • Pulsating heartbeat being heard in right ear
  • Double vision
  • Feeling that ears were clogged
So after taking the normal OTC allergy drugs it was time for a visit to the family doctor in October of 2008. Our family doctor prescribed Flonase (nasal steriod) hoping that it would clear up any inflammation in the sinus cavity and the double vision.  The Flonase definitely helped clear up the headaches.  However, the other symptoms persisted and Jenny visited our family doctor at the end of November.  At this point, he felt that it was necessary to refer Jenny to an Ear, Nose, Throat specialist (ENT).  

So, onto the ENT....

The ENT checked Jenny out and ordered a nasal CT scan- all of which checked out just fine. However, the symptoms mentioned above continued to persist and were slowly driving my lovely wife mad.  Finally, out of frustration she scheduled another appointment with the ENT again and started taking some prednisone (another steriod).  The ENT mentioned that there was a particular autoimmune condition called Meniere's disease that caused some of the symptoms mentioned above.  While not much is known about Meniere's, the use of a diuretic was suggested by the ENT.  The ENT was also concerned about the "pulsating heartbeat" heard in the ears, so she ordered a brain MRI to rule out any other issues. So on January 9, 2009 Jenny had a MRI of the brain.