Author Topic: Newbie in NM possible surgery w/ Dr. Hayden at the Mayo, or other possibilities?  (Read 4553 times)

Stepphers

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Hi I am new and only have migraines and slight dizziness.  I think my hearing is fine. My mom had a brain tumor so my Neurologist suggested I have an MRI w/contrast.  Now I found out I have a 10.77 mm AN.  2 local Neurosurgeons are saying surgery.  I have no idea where to even begin researching doctors??  I am meeting with the local ENT surgeon and Neurologist.  Is there a link to good questions to ask?  I also have an appt with Dr. Hayden in Arizona at the Mayo Clinic.  Any thoughts, advice, would be appreciated.  I am in my mid 30's in pretty good health with 2 little kids.  thank you

Oh and one last question, where do most people in the SW go for surgery? 
« Last Edit: May 16, 2013, 07:39:50 pm by Stepphers »

Stepphers

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I could go to HOUSE but I would need to change insurance providers and wait until January. 

phantagrae

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Hi!  I'm originally from NM (ABQ)  :)

I'm currently living in Arkansas and was diagnosed with an AN just last month.  I've just sent my records to St Joseph's Hospital in PHX to see about being treated there.
My sister who lives in PHX had also suggested Mayo, but I came across info about the Barrow Institute/St Joseph's Hospital.

I'm not sure about the insurance issues, since my insurance isn't going to cover any of my treatment anyway.
Have you talked to your insurance company about the treatment issues?  If your tumor can be treated with radiation, I would think that would generally be less complicated and dangerous than surgery.
I just went online and searched for info on ANs and about the different options, from different types of surgery (depending on how good your hearing is, for example) , to the different type of radiation treatment,

Since I'm a professional orchestral musician, who plays a woodwind instrument, surgery is pretty much out of the question because the two things I need to preserve--my hearing (which is in very good shape) and my facial nerve--are the very things you can lose in surgery, so my local docs here suggested radiation.
While I could have had it done locally, I really wanted to go somewhere where I felt the docs were most experienced or specialized, so I chose Barrow.  Since my sisters live in PHX and my parents can easily come down from ABQ, it makes sense on that level as well as on the medical level.

So I guess what I'm saying is that you have to figure out whether surgery or radiation will work best for you, and that's gong to depend on the size and placement of your tumor, the degree or severity of your symptoms, and what sort of outcome the doctors are looking at for you.
I know that radiation might not kill or stop my tumor, and in a year or so if it is still growing, I may end up having to have some kind of surgery, but at this point in my life, radiation makes the most sense.
You'll have to assess what will work best for you, but don't let the insurance company decide what kind of treatment you're going to have.  That's a decision you'll have to make for your own sake.

I'm probably going to be paying for this procedure for the rest of my life, but I feel this is what I need for my life.  I'm very blessed that I have friends and family who are willing to help me as much as they can.
I'm looking into self-pay discounts and possibly setting up some kind of payment plan if the hospital will work with me on that, but at this point I'm still waiting to see if they'll take me on and what treatment they think will be best.

Good luck!  There is a folder here with physician/hospital links, which is where I found Barrow.
Numbness on right side of face beginning some time in 2012 through early 2013
MRI 4/15/13
20mm x 19mm x 16mm intra and extra canalicular AN on Right Side.  ("Largely extracanalicular")
FSR treatment beginning on July 22, 2013--going for 30 treatments

Stepphers

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One of the Neurosurgeons I saw said Barrows is very good; I can see why you would want radiation since you are in the orchestra!  Please keep us posted how you are doing.  Thanks for the info.  I am going to get a few opinions; I had one and one over the phone.  I meet with our local ENT surgeon in mid June.  I might just be a watch and wait.  It is interesting to read which people have issues with balance, hearing, etc and the size of their tumors.  I am sorry you don't have insurance but it sounds like you have some really great friends and family.  Sending good thoughts your way for your upcoming GK!

arizonajack

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If you are considering treatment in AZ you might also want to check out the Barrow Neurological Institute Acoustic Neuroma Center:

http://www.thebarrow.org/Neurological_Services/Brain_Tumor_Center/Acoustic_Neuromas/index.htm

I had GK there in January. My team were the first 3 on the specialists page:

http://www.thebarrow.org/Neurological_Services/Brain_Tumor_Center/Acoustic_Neuromas/203337

They also do surgery.

Also check out the University of NM Hospital. Appears that they have some specialists there. You'll have to do your own research into their doctors and facilities. Couple of names are listed on the page.

http://hospitals.unm.edu/neuroscience/svcsprog.shtml
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Stepphers

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thank you ArizonaJack for the links!