Choosing a doctor/facility for radiation (fast growing AN)

[Sueoelke]

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 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.

[xiphias]

Oh hi there, we're almost in the same boat. Which sucks for us, but solidarity. I've also had two surgeries and now I'm scheduled for radiation late this month because this sucker will just not go away.

I'm not in the American system and we don't tend to get to "shop around" the same way, but my two cents: one of the first questions I asked my radio-oncologist was about his specific experience with ANs. He said he usually consulted for one per week and treated one per month. That gave me a good starting point to ask about his success rate and be sure that I was in the right place. I know for surgery, one of the biggest factors in success is an experienced surgeon, and I would think that radiation is the same.

Good luck to you!

[arizonajack]

Also, does anybody have experience with radiation at St. Luke's Hospital in Milwaukee WI?   

A check of the hospital's website reveals absolutely no mention of acoustic neuroma or any specialties in that area nor any facilities with Gamma Knife or Cyber Knife equipment.

https://my.aurorahealthcare.org/ahc/portal/find-a-location/locationDetail/hospital/aurora-st-lukes-medical-center/services/!ut/p/b1/pZDLcoIwGEafxRcwARKSLEMhRIuCikWzcbxxv4ha8PFbu2pnWtuZ_rt_5pzFd4ACa83QGcGQIgZWQNXbLku216ypt-X9V-bGcg2Pc-Q70tIp5JRMPMo0GbjoHVh_BlhoGXBE0DgkgQXhM_6fD42_-fCH4_A3fwxUtquG_b4awiExEYI61jHRGCYmeLH3BXOSUWo7dnrR0tmldXV6U41gSZP7onZOnHXlvMN1lyBVu6aM81xczzKsliOiMkNEqK3FQT8XgXXUx6m9hu4-IxPjyZezyOvbLl_Yu9Wh94MlbhMtEjguymsTTqWyXk926vWLzvOKeYgoyRmPzWaT8wGIgPq67JvwD4F72Q_gQbqpbKojqFQpBDVOTswHb0n3o7I!/dl4/d5/L2dBISEvZ0FBIS9nQSEh/

Looks like you are going to have to look elsewhere.

[sunny]

Hi Sueoelke,

I am sorry to hear about your tumor regrowing and hope you find the team and treatment that brings you success in treating it once and for all.

Unlike you, I did not have surgery prior to my radiation, but I was also needing guidance and experienced voices regarding which path to choose to treat my AN. I originally went to see the "closest" doctor to me, someone within my medical facility's organization, and recommended to me by my ENT. (I had to wonder if my ENT was bound to recommend this certain doctor.)

But before I met with him, I found this site, read for hours here, and learned more about my tumor than I had ever imagined I could. I also listened to two interviews on the site myacoustic.org, that were completely enlightening for me. (Thank you, Francesco)

By the time I met with this doctor, I knew that I wanted someone VERY experienced in ANs, not only the for radiosurgery itself, but with updated equipment, and support during the (possible years of) "recovery." He turned out not to be the doctor for me.

I ended up choosing radiosurgery with a doctor that is an hour away from me. It was a decision I was very comfortable with. I wish I had advice for you specific to St. Luke's, but I don't. I will say though, that I have read many of the ANers here say to choose a doctor with a LOT of experience with treating ANs, as you will find the most success with them.

I wish you the best of luck and good health going forward.
Sincerely,
sunny