Author Topic: Anyone from Wisconsin?  (Read 4072 times)

northerngal2020

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Anyone from Wisconsin?
« on: September 19, 2014, 09:20:47 pm »
Hello,
I was diagnosed with AN almost 3 years ago and Superior Canal Erosion with in same ear a year later. The tumor has now grown to the brain-stem with awful symptoms.  It has turned into a very negative experience for me from the medical clinics.  Where is the best place to have surgery in Wisconsin?  I have tried one major hospital in Milwaukee but it did not work out.  They were going to do my surgery without any pre op testing. (which it turned out I was in sever hyperthyroidism)  Thank God I did not go through with surgery.  Plus, the ENT will not acknowledge any of my symptoms.  Just looking for any help that could point me in the right direction. 
Thank You   

gordy

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Re: Anyone from Wisconsin?
« Reply #1 on: September 22, 2014, 07:34:32 pm »
im in the milwaukee area. had gamma knife in 2007. i was treated by a physician at freidert and thats where i had my gamma knife. my doctor has since moved to oregon. i see someone there now that worked with him. if you have any questions please feel free to email me.

gordy

arizonajack

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Re: Anyone from Wisconsin?
« Reply #2 on: September 26, 2014, 04:56:23 pm »

Check with the people that are involved with the support groups.


WISCONSIN
 

Green Bay
 
Leader: Bonnie Simon
920-731-4647
bjs3323@gmail.com
 

 
 
Co-Leader: Audrey Laskowski
920-822-5635
 

Milwaukee
 
Leader: Scott Van Ells
920-323-9141
scottvanells@gmail.com
 
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

sandyinwisconsin

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Re: Anyone from Wisconsin?
« Reply #3 on: September 30, 2014, 07:58:23 pm »
Hello from Wisconsin,

Please check into the University of Madison. I think they do more surgeries
than Milwaukee.  There are two ENT's  Dr. Mark Pyle's almost 60 years old and has done many
surgeries.  Dr. Sam Gubbles is younger and less experienced.

The brain surgeon is Dr. Baskaya who is a wonderful doctor from everything I have seen and heard.
He is very down to earth.   You could probably go to Madison and just meet with him and not the ENT's.
For some reason they don't schedule the appointments together. 

If I were to have surgery, I would chose Dr. Pyle. I have heard nothing but the best about him. 

If you are interested in radiation, I know a great PhD radiation oncologist at Madison who is a true gem.

Sandy
1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.

oak1971

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Re: Anyone from Wisconsin?
« Reply #4 on: May 31, 2015, 11:52:15 pm »
St Luke's in Milwaukee is handling my surgery still no date yet. They are top rated nation wide as is Freodert (Medical College)
Diagnosed left side AN 5/27/15

Sueoelke

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Re: Anyone from Wisconsin?
« Reply #5 on: July 04, 2015, 03:54:18 pm »
I'm in Milwaukee.  I was originally diagnosed with a 3.2cm 2/2014.  I had translab in 5/2014 knowing that a second surgery would be likely due to the initial size.  I had SSD and minimal balance issues following surgery as well as concentration/memory issues.  I had eye twitches prior to surgery, but no twitches or paralysis post surgery!  My MRI in 11/2014 showed the AN was 2.2 cm.  2nd translab was 2/2015 and MRI in 6/2015 shows the tumor is growing fast and already 2.8cm which is larger than prior to the 2nd surgery only 4 months earlier.  I have complete trust in my surgeons (Drs. Millen and Dagam) who are now recommending radiation.  I hadn't considered radiation previously so I'm just starting my homework on it before my appt with the radiation doctor next week.  My question is whether it is critical to find a radiation doctor/team who has a lot of experience in ANs in particular or just a lot of experience in CK or GK in general??  Also, does anybody have experience with radiation at St. Luke's Hospital in Milwaukee WI?   The hospital is only 5 minutes from my home, but I will consider traveling if I feel it will be best for me. 
Diagnosed 2/2015 with 3.2cm left side AN.
Translab 5/20/2014
2nd Translab 2/2015

oak1971

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Re: Anyone from Wisconsin?
« Reply #6 on: September 13, 2015, 05:57:46 pm »
Post op 15 months on a2.8 cm neuroma.  Strkoked out the day after surgery.  Brain is fine , but left side motor skills are all shot.
 
« Last Edit: September 13, 2015, 06:25:02 pm by oak1971 »
Diagnosed left side AN 5/27/15

 


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