Author Topic: Close to a choice after 2 1/2 years... Surgery or Cyberkinfe / Jan or Feb  (Read 1698 times)

daoisthere

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  • Composer and Guitarist
Special thanks to ANSydney and others. 

I spoke with Dr. Slattery at House Clinic and will speak with Dr. Chang at Cyberknife in Bay area this coming week. 

I have firmed up getting Medicare Medi-Gap G  insurance which will pay for 100% co-pays including excessive charges in the USA... Not including Food and Lodging.   

Grateful is an understatement of how I feel about this forum.   I have no idea how some folks endure and others do not.  This said... for me enough is enough.  This condition is highly under-rated.  I have no idea how some members co-exist with this.  I am a music composer and the overall co-morbidity of this condition has been overwhelming.

As a 30 year cancer survivor, I do understand the idea of endurance.  But I have found no support here in Albuquerque with respect to the over growth of schwannoma  cells.  Especially with the notion that radiation therapy itself could of been a contributor to this long term outcome. 

I am 65 years old... Fit as they come.  Practice yoga and tai chi for over 30 years.  Weight train daily.  Still score music.  No complaints.  Being spiritual minded has helped with my dream life.  No fear in my dreams. More Jungian kind of dreams... Invasion and injury sort of meanings.   In fact I have found more empathy towards those in pain and those struggling in life.   So... No complaints.

My cancer co-morbidity is huge.   I was hospitalized for over one year, 30 years ago and survived...But it left me with a vulnerable frame emotionally.   I have multiple cuts on my body from the experience, including pulmonary fibrosis, cardio fibrosis, radiated gut, spinal stenosis... ect.   The probable cause of my schwannoma is the full body radiation.   

I have seen many folks report on this forum that they had received radiation therapy at one time.

Thank you for being my brother and sister in this process.  I would gone bat *&^$^&$ mad without your support.

Peace and Love,
Gino
08/21/2017 MRI reveals AN
10.8 x 3.6 x 4.2 mm Completely fills Right Canal
10/09/2017 Watch and Wait
01/19/2018 2nd MRI  Tesla 3 12 x 5 x 4 mm
New Diagnosis - Partial Empty Sella

v357139

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Re: Close to a choice after 2 1/2 years... Surgery or Cyberkinfe / Jan or Feb
« Reply #1 on: February 08, 2020, 09:52:04 pm »
Choosing can be very hard.  It was very, very hard for me.  What did you decide?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

BigJoeBass48

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Re: Close to a choice after 2 1/2 years... Surgery or Cyberkinfe / Jan or Feb
« Reply #2 on: February 13, 2020, 01:01:05 pm »
Gino-----I read your post, am just wondering, with the canal nearly filled do you experience tinnitus severely as I do? My AN just grew to 1.6x1.4x1.6 and tinnitus is at times unbearable. Instead of white noise I often listen to Classical music. I listen to Sarah Chang play "Meditation by Thais" and my favorite "Air" by Bach on the violin and others for about 3 hours daily through headphones. Sometimes the tinnitus goes down. I also love real moving music like "Johnny Has Gone for a Soldier" by Diane Taraz. Do you have any other suggestions? Thank you, Joe

 


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