Author Topic: Experiences at Barrow in Phoenix or University Hospital in Denver?  (Read 3262 times)

ColoradoGal

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Comments would be welcomed. 
« Last Edit: August 09, 2008, 01:56:52 pm by ColoradoGal »
2.5cm x 2.8cm debulked Aug 2008 at Barrows
retrosig, Spetzler & Weisskopf
post-op SSD, but all the facial stuff is working!

leapyrtwins

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Re: Experiences at Barrow in Phoenix or University Hospital in Denver?
« Reply #1 on: July 09, 2008, 11:43:29 pm »
Hi, ColoradoGal and welcome -

I have no experience with these doctors or hospitals, but as someone who had a similar situation, I wanted to offer my two cents worth.

I was 45 1/2 when I was diagnosed with my AN last year.  I did have symptoms - fullness in my ear and diminished hearing.  My diagnostic MRI showed that my AN was 1.5 cm, but when I had surgery about 6 weeks later, the docs discovered it was really 2.5+ cm.

I chose surgery because I decided that radiation just wasn't for me.  I opted for the retrosigmoid approach in the hopes that the hearing I had left in my AN ear could be saved (I had very good word recognition).  But ultimately the docs weren't able to save my hearing - through no fault of their own. 

Since my surgery I've read a lot of posts on this forum about others who had retrosigmoid and ended up SSD like me.  Although there is a chance your hearing can be saved with this surgery, the odds aren't that great and there are no guarantees.

IMO you should seriously consider radiation instead of surgery because it would give you a better chance of saving your "normal" hearing.  SSD isn't the end of the world, and there are ways to cope with it like the BAHA or the Transear, but IMO nothing compares to having your hearing.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ppearl214

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Re: Experiences at Barrow in Phoenix or University Hospital in Denver?
« Reply #2 on: July 10, 2008, 05:40:57 am »
Hi Colorado and welcome.  Glad to see you asking questions and we are here to help as best as we can.

I know of a few that were treated at Barrows in AZ.... fab facility for the treatment of ANs.  One person of recent treatment that comes to mind is MaryBKAZ..... Barrows offers many forms of AN treatments (ie: surgical, Cyberknife radio, etc)..... Mary opted for CK radio.  In this thread, she notes her AN journey and working with Barrows to help with her decision making process and treatment plan for her AN.  I share this thread with you, not because it notes her decision choice, but does outline her journey with BNI.  I hope it helps.

http://anausa.org/forum/index.php?topic=6523.0

Mary is a terrific lady and very helpful. I'm sure she will be able to share her BNI experiences with you directly.

Hope this helps... and again, welcome.
Phyl
« Last Edit: July 10, 2008, 05:42:38 am by ppearl214 »
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ColoradoGal

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Re: Experiences at Barrow in Phoenix or University Hospital in Denver?
« Reply #3 on: July 10, 2008, 09:59:57 am »
  I did have symptoms - fullness in my ear and diminished hearing. 

Thanks so much for the feedback.  Can you elaborate on your "diminished hearing?"  Was that a symptom that led to discovery of your tumor?
2.5cm x 2.8cm debulked Aug 2008 at Barrows
retrosig, Spetzler & Weisskopf
post-op SSD, but all the facial stuff is working!

Nancy Drew

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Re: Experiences at Barrow in Phoenix or University Hospital in Denver?
« Reply #4 on: July 10, 2008, 03:19:25 pm »
Hi ColoradoGal,

I am from Denver, and I saw Dr. Cass last week for a second opinion.  He told me to continue to Watch and Wait even though my doctor wanted to go ahead with GK.  I have decided to wait a little longer.  Instead of my annual MRI, I am going to go for a six month one in Nov. and go from there.  Have you seen any other doctors in the Denver area?  My doctor is David Kelsall.  He does surgery and GK at Swedish.  He sent me to Dr. Cass for the second opinion.  There are a couple of us CO folks on this board!!!

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

MAlegant

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Re: Experiences at Barrow in Phoenix or University Hospital in Denver?
« Reply #5 on: August 20, 2008, 09:18:29 am »
Hi there,
My neurosurgeon trained at Barrows.  His name is Nick Bambakidis and he was excellent.  I couldn't have asked for a better outcome and now am just dealing with minor post-op stuff.  Barrows is pretty renowned for AN's.
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

 


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