dlbenz's Blog

Hello again.  For the first time in over a month I am actually sitting at my own desk in my own home writing on my own computer; and while the pedicure and swimming pool (especially the pool) were nice places to be, nothing beats being back home.  It all means I am that much closer to being back to normal and putting this adventure behind me.

 

It was 4 weeks ago today that I underwent the surgery that will forever impact the remainder of my life.  I can't believe it's been 4 weeks!  The time has flown by so quickly.  Needless to say I am so happy to have the worst behind me AND it looks as if everything will have been worth the trouble.

 

Before leaving LA on Friday I returned to the House Institute for my first post-op hearing test and a meeting with Dr. Brackmann.  Both those events couldn't have gone more positively.  The hearing test revealed that my left ear is just 3 decibels below where it was pre-op.  Just 3 decibels!  And the news gets even better.

 

Dr. Brackmann told me he expects my hearing will improve over the next few weeks as the swelling continue to subside.  He says my hearing will be at worst 90% of where it was pre-op and that 100% is not out of the question.  This was amazing news considering I had a 40% chance of losing that hearing completely.

 

In fact, I feel even more fortunate after that meeting Friday because of the reaction from Rita, Dr. Brackmann's assistant.  Rita was the first person I ever spoke with at House and is truly a spectacular lady.  She has been keeping up with this blog (Hi Rita) and when she saw me Friday she walked up to me and said, "Four times! Four times!" 

 

I was confused at first but then she told me she was referencing my blog and the fact that my hearing had gone out 4 times prior to my diagnosis.  She then added that I was so lucky to still have my hearing and that nobody goes through that much hearing loss and still saves it in surgery.  Wow, did that make me feel ecstatic and relieved all at once.

 

As for my facial weakness; I still can't smile but my face is improving.  In fact, Dr. Brackmann was more than optimistic when he examined the movement that has returned.  "I'm 100% positive you will get it all back," he told me.  And there's been plenty of improvement to back that claim.  I can now close my left eye about 90% of the way, I am starting to regain a little movement in the left corner of my mouth, and I can raise and scrunch my eyebrow a noticeable amount. 

 

I am still experiencing dizziness but even that continues to subside.  On that 1 to 10 scale I'd say I'm now at about a 4.  In fact, when I am just hanging out, I feel great, it really only becomes bothersome when I try to move around.  In other words, I'm still a couple weeks away from being ready to man the sidelines at Redskins Training Camp but I am getting close.  (BTW: I’m totally bummed about Phillip Daniels going down, he’s such a great guy BUT I did cover Jason Taylor while in Miami and he also is a great guy, so I'm psyched he is aboard).

 

The only other issue I am experiencing is related to my facial weakness.  The vision in my left eye is blurry quite a bit.  I called the doctor today and he said this is related to the weeks of no blinking and constant need for eye drops.  It’s likely this will itself now that I am (almost) blinking regularly again, but wants me to go see an ophthalmologist just in case.  So stay tuned.

 

So that's pretty much that.  Now that I am home again, and the majority of this is behind me, Sacha and I can finally starting focusing on Baby Benz.  We went to her doctor today and everything looks good.  We can't believe we're going to be parents in just 3 months.  

 

But that's a whole new topic best reserved for another day.   Instead of journeying down that road I'd prefer to address the "Why I chose the House Clinic" topic I've been putting off.  Though it almost seems silly to even need to write that topic anymore considering the results I've had speak for themselves.  Nonetheless I will offer as much insight as I can.

 

When I was diagnosed with my Acoustic Nueroma I was completely freaked out.  (In fact my first posting on the ANA web forum was entitled exactly that).  I knew absolutely nothing about AN's and even less about what I should do about the tumor. 

 

The day I was diagnosed Dr. Fitzgerald told me I should undergo a radiation treatment called a Gamma Knife.  (I will get more into GK in a second) I then asked him if the GK would endanger my hearing and he replied, "Yes, you'll likely suffer some permanent hearing loss, maybe even total loss.  But it will go away gradually, “as if that last sentence was suppose to make losing my hearing ok.  Needless to say, that option didn't sound very appealing.  But what other options existed? 

 

My first phone call was to my brother-in-law, Mark, who is a plastic surgeon in Upstate, NY.  Mark's help throughout this entire process was immense and I feel very lucky to have a doctor in the family.  I sent Mark a copy of my MRI and he confirmed the AN diagnosis and went to work researching the tumor with his friends in the medical community.  A few days later Mark called me and told me everyone he talked to said, if it was them with an AN, they would have it surgically removed and they'd do it at the House Clinic in LA.

 

From there it was off to the internet to do some major research.  Again the ANA website and forums page (www.anausa.org) were invaluable (and thank you to all the people there who were quick to offer their opinions and experiences as I began my journey down this road).  It quickly became apparent that there were three options available to people diagnosed with an AN:

 

1) Watch and Wait

 

2) Radiation Treatment (Gamma Knife or Cyber Knife)

 

3) Surgery

 

-Watch and Wait is exactly what it sounds like.  As long as the tumor is not causing any problems just let it be and keep an eye on it with regular MRIs.  Given my previously noted hearing and vertigo issues I did not view this as a personal option.

 

-Radiation Treatment was a pretty appealing option.  Though I will admit, I'm still not 100% sure I understand the real differences between CK and GK (and that confusion made this option a little less appealing).  Both CK and GK basically involve a pinpointed beam of radiation being aimed at the tumor in an effort to kill it. 

 

The biggest pro of the GK & CK is the non-invasive nature of the procedure.  Both treatments require a simple doctor's office visit.  They zap the tumor and you go home... and hope the tumor was completely killed AND that your hearing and facial nerves were not damaged.  

 

And therein lays the problem I had with radiation.  These treatments haven't been around for but 20 years (less for CK) and early on the radiation levels being used were so high they were all but guaranteed to kill those nerves, along with the tumor.  Over the years, in an effort to avoid killing the nerves, the radiation levels have been dialed back, but now there's a debate on whether the levels being used are enough to completely kill the tumor.  And since there's a limited pool of data there's no way of knowing what the long term success for this treatment is 20 or 30 years down the road.  Not to mention the potential implications of having your brain exposed to radiation.

 

-Finally there's surgery.  The surgery option comes with a number of bad sides, which are pretty obvious considering you are opting to have your skull cut open and let a surgeon operate inside your head.  But surgery has some major upsides as well.

 

Perhaps the best thing about surgery is it's permanent.  Only 2 in 1000 people will ever have their acoustic nueroma come back after having it surgically removed.  

 

Secondly, with surgery, patients know immediately post-op if their hearing has been preserved (and in most cases their facial nerve as well).  Thus, there's no waiting and wondering, am I losing my hearing?

 

Had I been 59 instead of 39, I likely would have chosen radiation.  However, every doctor I talked to (most of whom did both forms of treatment) told me if they were me, it would be surgery all the way.  As much as I would have preferred to not have my skull cracked open, I had to agree.

 

The last thing I would have wanted would have been to get radiation treatment and find out 15 years from now that the tumor was growing again and I needed surgery.  I decided it would be better to have surgery at 39 instead of 54.  

 

Plus, I wanted the thing out.  With radiation there are yearly MRIs to worry over while doctors try to see if the tumor is growing again.  I didn't want to have to worry about this thing down the road.  Getting it out, as tough as the process might have been, seemed like the best option for me.

 

So after much research, consults with doctors and sleepless nights, I knew which treatment option to choose.  But where should I get it done?  Yes, my brother-in-law recommended House, but what about the great hospitals near DC.  Surely Johns Hopkins would have to be an option.  So again there was more to stress over and more research to do.   

 

Again, the ANA website was huge.  I was able to use the site to find a handful of doctors around DC as well as find lots of commentary on the House Clinic.  I ultimately narrowed my choices to a pair of doctors at the University of Maryland Hospital in Baltimore and House.  The big advantage to the doctors locally was that I was able to meet with them in person.  Both seemed excellent and had over 200 surgeries under their belts.

 

But Dr. Brackmann and the people at House have 10x that experience.  And they made a good impression from the start.  Dr. Brackmann reviewed my MRI and gave me a free consult over the phone.  From the very beginning he made me feel as if I was a good candidate to save my hearing.  Additionally, he was unbelievably diligent at getting in touch with me.

 

Just after I initially sent my MRI to House, Sacha and I went to the Bahamas on vacation.  I told Dr. Brackmann’s assistant that I would be unreachable for a week and not to have Dr. Brackmann bother calling until I got back.  Somehow he never got that message.  I know this because he actually called me EVERY day that I was in the Bahamas and left a message.  What Doctor calls someone 6 consecutive days, Saturday included, when they get no response.  Wow!

 

When we finally did talk, Dr. Brackmann emailed me pages upon pages of research the House Clinic has done on its surgeries as well as how they can predict hearing preservation.  Dr. Brackmann put my odds at 60-40.  The guys in Baltimore said 50-50 and offered no such paperwork.

 

In the end, the abilities to, possibly, save a few bucks and be close to home, were no match for the efficiency and experience of House.  My hearing and future were too important not to go where I had the best odds of success.  And I will never regret that decision.  (In fact at the end of my meeting with Dr. Brackmann last Friday I thanked him for his positive impact on my life and took the picture which I’ve uploaded to the site).

 

So that’s pretty much it.  I’m anxious to get back to blogging about actual sports.  I will offer a few more updates on my condition but from here on out my comprehensive writing about my AN on this website is pretty much finished.  I hope the information I’ve shared over the past few weeks will be helpful to someone else down the road.

 

Thanks again to everyone who has contacted me in one way or another.  I truly have been blessed by the outpouring of support.  And boy do I have a lot of emails and phone calls to return.