New to ANA-Wanted to share my AN experience

[danaanddaveb]

I am new to ANA and new to discussion forums.  However, I have discovered this website and thought it important to share my experience with the hope of being able to provide information and support to those who have been recently diagnosed.

I was diagnosed with a 4cm AN in May of 2001 when I was 4 months pregnant with my son.  The tumor was so large that my surgeon was not able to wait to remove it as it was starting to push against my brainstem.  I was also having significant hearing loss and facial numbness.  In July 2001, I had the first of two lengthy surgeries in order to remove the AN.  I was six months pregnant at the time and there were lots of issues that had to be addressed besides the AN.  The baby was also at significant risk but the surgery could not be delayed.  I had a 7 hour surgery which cored out the tumor and took the pressure off of my brainstem.  The baby did a fabulous job and the entire team of doctors from both Neurosurgery and Obstetrics were amazing.  However, they did not want to risk the baby so they only were able to core out the tumor.  My surgeon gave me 6 months to recover after I gave birth and then I underwent the second surgery.  The second surgery was 10 hours long.  Again, the team of neurosurgeons at NYU/MT. Sinai in NY, NY was fantastic and I made it through without any damage to my facial nerve which was amazing.  I knew going into the first surgery that I would lose my hearing on the right side completely and I did.  Fortunately for me, I do not suffer from Tinnitus nor have I ever and I am grateful for that.  I don't particularly care for being deaf but it is a small price to pay for the outcome.  My son is now 5 1/2 years old and an angel and I just had my fifth MRI that came back clean. 

It was a tough experience for me but I am proud to say that I made it through and so did my son.  I really learned to never take anything in life for granted.  I hope that anyone that reads this will realize that, although it is a difficult road, you will get through it one day at a time.  I wish I had known about this wonderful network of support at the time.  There is nothing better than getting advice and support from others who can truly relate to what you are going through.  Best of luck to everyone!   

[Palace]

Danaanddaveb,


Welcome and thank you for your story.      You sound so good, balanced mentally and healthy.  You are enjoying life!  Keep us posted and have a wonderful, Springtime.



Palace

[Lorenzo]

Danaanddaveb,
Great story! If ever there was one to demonstarte that things do turn out well, yours is the perfect example of that kind of story! Thank you for sharing it with us!
Continued good health to you all.
Ciao, Lorenzo

[ppearl214]

danaanddave... welcome! That is one heck of a journey you all have taken and thrilled to hear of the outcomes.... thank you for sharing this with us and looking forward to more posts/contributions from you....... truly amazing journey for you all.....

Again, welcome!
Phyl

[Sam Rush]

  Welcome!!  inspiring story!!     If you really can't tolerate the single sided deafness, consider a BAHA     Bone anchored hearing aide.


For my curiosity, What were the names of your surgeons.

[Crazycat]

Great story! Inspiring! The variations of experience we have never cease to amaze me.

     Paul

[Featofclay]

   Enjoyed reading about your AN journey.  Hopefully some of the "newbies" on here will read it and know there is life after AN surgery/radiation.  Thanks for sharing.
Jean

[Jim Scott]

Hi, Dana:

Thanks for your personal AN account - and welcome to the forum.   I'm always glad to read AN success stories.  We need more of those.   I was also pleased to read that your then-unborn child got through the surgeries without incident.  What a pair! 

I also had a two-step procedure for a large (4.5 cm) AN tumor.  The first step was for the neurosurgeon to core out the tumor, just as you experienced.  The second step, 3 months later, was - not another surgery - but FSR (Fractionated Stereotactic Radiosurgery).  Basically, radiation treatments but - unlike Gamma or Cyber Knife procedures - very low-dose.  Mine were 125 rads (daily) spread over 5 weeks, intended to kill the remaining tumor cells while sparing facial and other important nerves.  The treatment plan was successful; no complications from either the surgery or the FSR.  I'm now 9 months post-op and 5 + months post-FSR.  I 'll have an updated MRI scan this month and a follow-up consultation with my neurosurgeon that same day to see how I'm progressing.  I feel great and I'm confident that all is well.  An MRI scan in December showed some necrosis of the remaining tumor and I trust that this new scan will show even further necrosis. 

Much like you, I found the AN surgery/FSR treatments a tough road but I had great support from family and friends.  I also attempted to stay positive and optimistic throughout and was determined to get back to normal as soon as was feasible.  I did.  I was equally determined not to allow the AN to define my existence.  It hasn't.  I'm still 'me', just more appreciative of things.

Jim

[krbonner]

Congratulations on a great outcome!  My AN became symptomatic halfway through my second pregnancy, and I was diagnosed when my youngest was 4 months old.  Fortunately, I was able to wait a while before treating.  My boys are now almost 5 (his birthday is Sunday!) and 2.

Thanks for posting!

Katie

[danaanddaveb]

Just to respond to the question by Sam Rush...my surgeon's name is Dr. Kalmon Post, Chief of Neurosurgery at Mt. Sinai Medical Center in NYC.

Thanks so much for everyone's positive feedback.  You are a truly remarkable group and I am excited to be a part.

Dana

[Battyp]

Dana
  WOW!  What a story of inspiration.  I'm sure it was a very difficult time at what is suppose to be a very joyous time.  Thanks for sharing your story!

M