More damage to tenth cranial nerve or Gamma Knife?

[Joseph]

Hi All,

   Looking for more advice or comments from anyone who can relate...
      After being diagnosed in 2008 I've undergone a retro.,trans., and most recently an endoscopic approach. The endo was the most successful and I highly recommend it to all patients dealing with large (surgery needed) A/N before any other surgeries. No swelling and healing time was cut in half, also the surgeon told me if I had done it this way initially I may still have some hearing in my left ear and equilibrium.
 However as my luck goes the surgery damaged my tenth cranial nerve (due to the tumor location) and I've had all kinds of new problems with this such as swallowing difficulties, dry cough, digestion problems, and so on. With about 3.3cm of tumor remaining Gamma Knife maybe my only option at this point so I won't have to eat out of a bag for the rest of my life. The doctors tell me their is about an 85% chance that GK can take care of this without requiring an addition sugery, so I'm going for it in August. I have read many topic here in discussion about the GK treatment and based on much of what was said 3cm is max. for this sort of treatment. Trying to always stay optimistic but much of the time wishing I had a Hot tub time machine...

[leapyrtwins]

Joseph -

good luck with the GK.  I hope all goes well for you in August.

Please let us know the date of your surgery so we can put it on the AN Calendar and remember to wish you well before the big day.

Jan

[Jim Scott]

Hi, Joseph ~

I recall meeting you and your wife Holly Stacy at the northeast ANA Discussion Forum brunch at Maxwell's in Worcester, Massachusetts back in October, 2009.  We spoke for some time and you related your AN history and the surgeries you'd undergone and that you faced even more. Frankly, I was quite surprised to learn that you had required multiple surgeries remove an acoustic neuroma. Although I'm pleased to learn that your third (endoscopic) surgery was successful, the fact that your tenth cranial nerve was affected and that is negatively impacting your quality of life is dismaying.  As you may recall, I underwent tumor debulking followed by FSR, both of which were very successful, so I have no experience with Gamma Knife - but many here do.  I assumed the 3 cm limit was due to possible post-radiation swelling issues that could affect the nearby nerves and the brainstem.  However, I'm not a doctor and certainly no expert in GK procedures so I'll defer to your doctors who've recommended this procedure and offer you my sincere hope that it is successful and that you can regain your quality of life.  Meanwhile, you'll be in our thoughts and prayers.  Please try to stay connected via these forums so that we can continue to offer you our support and whatever information we may (collectively) be able to give you.  I wish you better days ahead.

Jim     

[Joseph]

Thanks Jan and Jim
  Good to hear from ya.
     My Gamma Knife date is set for August 13th. Can you believe it the date is set for Friday the 13th. Well my wife said maybe with all my crummy luck lately this would work in a reversal as far as luck goes. And to put the cherry on top of this whole experience my wife is now 8 months pregnant. The baby's anticipated arrival date is August 21st which gives me approx. 1 week to heal from this treatment in which I have read can be done. I just hope she don't plan on coming early this being our first child she could either come early or later. Hopefully later...Wish me luck.

[leapyrtwins]

Don't stress about the surgery being on Friday the 13th; I think your wife has a good theory.

Congratulations on the impending birth of your daughter.  I just LOVE babies! 

Get lots of sleep now!

[GRACE1]

Joseph,

Please give us an update.

Thanks!
Grace

[Joseph]

Hi All,


         Sorry for no update. I did postpone GammaKnife and am now looking into CyberKnife treatment. I felt uncomfortable with the whole process and anyday now that baby is coming. This is our first child and I don't want to miss a thing, nor do I need to stress my wife anymore than she already is.
   
   With my uncontrolled coughing spells I feel having my head screwed into a metal frame is not such a good idea.
   
    Since feb. I have improved my ability to swallow and my digestion is getting better too. I have lost over 30lbs since that last surgery and now none of my old clothes fit. (Its kind of funny in a way my wife has gained what I have lost so she gives me grief about it all the time).

At this point nothing will happen treatment wise until sept. and this gives me the opportunity to just focus on my wife and the baby...but will update here on forum as soon as she makes her arrival.

[moe]

Joseph,
Good call on postponing your treatment until after the baby is born. The first born IS a BIG deal and in itself a life altering event! (you'll see).
So hopefully no rush on the Cyberknife-the tumor isn't going anywhere, and the baby will need lots of TLC from both parents.
Congrats on your new family to be! What is her name? We love babies on the forum, and we love pics too!
Maureen

[Jim Scott]

Joseph ~

Because I always thought that if something doesn't 'feel' right, it probably isn't, I wholeheartedly support your decision to postpone radiation treatment until after you've become a father.  This is too important a time in your life (and your wife's life, of course) to be in any way incapacitated.  After the baby comes and things settle down a bit, the tumor will still be there and so will the radiation apparatus.  In addition, waiting a bit will put you in better condition for the procedure as well as better prepared, emotionally, which does matter. 

Your weight loss, even if unintended, is great.  Same thing happened to me pre-diagnosis.  My AN affected my Glossopharyngeal (9th cranial) nerve and I lost the sense of taste, followed by a loss of appetite and 30+ pounds.  In fact, this unexplained weight loss and loss of the sense of taste is what finally prompted me to see a doctor.  The rest, as they say, is history.  Fortunately, by watching what I eat and smaller portions, I've managed to keep my weight down to a 22 BMI level, which is not bad for a guy my age that doesn't do formal exercises. 

Here's hoping you and your wife will have a beautiful, healthy baby and of course, I'm confident you'll both be great parents.    I'll be looking for the baby photos here, soon.

Jim