Archive | November, 2012

Symptoms

30 Nov

As I have previously mentioned, what brought Britton into the ENT was problems with his hearing. He couldn’t hear anything out of his right ear. It started about a year and a half ago while he was on a treadmill probably in some lovely place like southern California, he noticed he couldn’t hear out of his right headphone.  For a few weeks he thought it was the headphones, maybe he sweat too much and they shorted out.  However, that wasn’t the case.  But he lived with it.  Sometime this summer it got worse for me.  He couldn’t hear anything I was saying to him in the car or if I tried to whisper sweet nothings into his right ear at the movie theater.  I started to harp on him about getting it checked out.  Then after the wedding and honeymoon I pushed so much that he made that appointment.  Like I have said before, he doesn’t have a lot of actual hearing loss, just trouble discerning speech.  It could be worse.  Then we discovered hearing was only the first symptom.

In 2007-08 Britton had eye surgery after a nasty blow to the face.  After the surgery he had minor issues.  Had double vision for a short time and his eyes would flutter around.  He was sure it was all due to the surgery and thought he just needed time to adjust.  4 years later we know it wasn’t just that he needed to adjust.  The way the tumor is pushing on his brain stem it is causing ocular flutter.  This is when his eyes will move rapidly at random and then stop.  He has been trying to adjust to this ocular flutter but it causes him to feel tired all the time because it’s like he can’t focus.  His eyes are working harder than normal to focus on things.  He also has a minor case of lazy eye.  That started in childhood and did get better until the last few years.  This also contributes to his eye issues and is a symptom of his epidermoid.

When we were at the various clinics the Neurosurgeons did some interesting tests where they would touch his face at the same place on both sides and ask him if it felt the same.  There were some places that the doctors would touch that wouldn’t feel the same.  When they touched his forehead he would feel it in his head or vice versa.  This was only true on the right side.  Also a symptom of his epidermoid.  This one was not one we would have caught on our own but it is definitely bizarre.

Some epidermoid patients experience other symptoms as well.  Some get bells palsy in the face which results in the inability to control the nerves in the face.  I think we are lucky.  These tumors can cause more damage than his has.  I am very thankful for his hearing.

Thank you for your support.

Epidermoid Brain Tumor

19 Nov

When Britton was first told that he could have a tumor causing his hearing problems we were told it was probably something called an Acoustic Neuroma. These are also benign tumors below the ear that develops on the nerve. It can cause the kind of hearing loss Britton has experienced along with other symptoms. After the MRI it was discovered to be an Epidermoid Brain Tumor, EBT for short.  This is an abnormal growth of skin cells that begins during development.  Basically some skin cells got trapped in Britton’s development that have, over time, grown into what we know to be a 3 cm tumor.  Here is the good news.  It is not a fatal diagnosis.  These tumors can be removed.  There isn’t any other form of treatment, however, because they don’t respond to other forms of treatment such as radiation or chemotherapy.  So removal is the only option for treatment.  Some people are diagnosed with little symptoms so they opt to let it be.  Only take action if it does begin to cause problems.  For Britton, there is evidence that it has grown over the past 4 years from another MRI that was done for another purpose.  The doctors believe it will only continue to grow and cause more hearing problems and possibly eliminate all hearing in his right ear.

About Epidermoids.  They are “sticky.”  Until a surgeon can get in there they can’t tell you with 100% certainty that they can remove every last bit of it.  The cells tend to stick to things in the brain and they are also flaky.  It would be easy for a small bit of the skin cells to flake off and get stuck in the brain.  That means there could be additional surgeries in Britton’s future.  After his surgery he will need to have yearly MRI’s and have the results sent to whatever doctor we choose.  We can’t be sure this won’t return.  The good thing is that it is very slow growing.  It could be another 27 years before we need to worry about it again.  If it decides to grow another direction we may never have to worry about it again even if it does grow back.  His tumor has grown in almost the shape of an L.  The bottom of the L is under the brain, along the brain stem.  The top of the L is reaching up into the brain.  In the picture I am pointing to the dark spot that is the tumor. You can see pretty clearly how it is pushing his brain stem to one side causing most of his side effects but more on those later.

So what next? Last week when we were at the Mayo Clinic in Rochester MN we came up with dates for surgery.  We really liked the neurosurgeon at Mayo and his staff.  He seems very optimistic about being able to remove the majority of the tumor.  The doctor in Omaha was afraid it would take him two surgeries to remove it due to its L shape.  The surgeon at Mayo said he had no doubt he could do it in 1.  We haven’t booked a surgery yet but we are looking at dates in early January.  Britton wants it out and I am there to support that.  We want to get it before it causes any more damage.  Thank you again to anyone that reads this and is supporting us.  We are so thankful.

Say What?

16 Nov

For many of my friends, you know. You know what we are going through right now so this won’t come as a surprise. On Monday, October 22 my new husband Britton was diagnosed with a benign brain tumor.

It all started about a year and a half ago.  My now husband’s hearing was starting to go just in his right ear.  At first, he thought it was his headphones.  A defect.  He soon realized it wasn’t.  Over the last year or so I have given him a hard time about his hearing.  Told him he needed to get it checked out to get him a hearing aid.  I joked about him having too much wax in there! On October 17, the week after our honeymoon, I pressed him to make an appointment with his ENT to finally get this thing fixed…

While he was at the doctor’s office I got a cryptic text.  It said “I’ve got some serious issues ;(. I have to get an MRI.”  Obviously I called him immediately but he was busy having audiology tests done.  He discovered in that appointment that there was something wrong with his nerves that communicate between his right ear and his brain and he was having the most trouble discerning speech.  It wasn’t his hearing.  Only about an 18% loss of actual hearing in that ear.  Nothing significant.  It’s the speech thing that is troublesome.

He had an MRI on the 19th and we got the results over the phone the following Monday.  As Britton was boarding a plane to Los Angeles he got the call from his ENT doctor.  They told him he has what they think is an Epidermoid Brain Tumor.  Once on the plane he proceeded to call me and tell me the news.  Through the noise of the plane I tried to understand what was going on but it was hard.  All I can remember from the conversation was that my husband had a tumor.  He did explain that it was benign and growing slowly but what does that matter right?  It’s still a tumor!

The following few days were difficult for both of us.  He was out in California trying to work while I was at home trying not to look on the internet at all the things I could find on Epidermoid Brain Tumors.  I had the privilege of calling his doctor in Sioux City to get more information but it didn’t help much because we really needed to be talking to a neurosurgeon or neurologist.  It became a waiting game.  Britton came home a day early after having a meltdown in California and we both took that Friday off from work just to be together.  My parents were in town because it was also the weekend of our Sioux City wedding reception so we had to put on our smiles and get through the weekend.  We weren’t ready to tell all his friends yet since we didn’t even know ourselves what we were up against.

Britton travels for his job 5 out of every 6 weeks.  The thought of him being gone during this had me a little freaked out.  However, we soon discovered just how blessed we really are.  After Britton told his office about what was going on they agreed that he needed to be home.  He took the next two weeks off of travel so that we could figure out our next steps.  We spent Halloween week reaching out to recommended doctors and hospitals to make appointments with neurosurgeons and ENTs that specialized in skull based tumors (that’s what an epidermoid is).  We were also lucky to get in to a specialist in Omaha on November 5 which was the soonest appointment we could get anywhere.

November 5th came and Britton and I headed down to Omaha.  What was supposed to be a 1 hour appointment with a neurosurgeon ended up being a day of going in and out of doctors offices to have all sorts of specialists look at our scans.  After the neurosurgeon we headed straight to his partner, an ENT, that works on these tumors with the neurosurgeon.  After that we had a quick refuel at Starbucks and headed out to a neuro ophthalmologist.  We needed to determine if some of the problems with his eyes could be due to the tumor on his brain.  I will post more on the details of that later.

Finally, by about 8 pm we were heading back home absolutely exhausted.  In the following days we were able to schedule more appointments at the Mayo clinic and headed up there this week to speak with another doctor and get a second opinion.  Over the past month we have had good days and bad and worked hard to keep everything together.  I never realized how strong I was until our first appointment in Omaha.  It amazes me.

I want to thank all of our friends and family that have been there to support us through this difficult time and the difficult times that are lying ahead.  As we have made our phone calls and pulled together our friends we can feel all the love that surrounds us and I am so thankful for that.  Our journey is definitely not over but I know our road will be filled with those people around us to support us.  Thank you.