Author Topic: Seeking Best Radiation Facility  (Read 3646 times)

kpygman

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Seeking Best Radiation Facility
« on: April 29, 2011, 11:21:17 am »
Hello Everyone,

Here is a quick recap of my situation:

27 yr. old male in the Chicagoland area. Have already had two surgeries performed by Dr. Leonetti and Dr. Anderson at Loyola, in Maywood, IL. Second surgery was highly succecssful but less than 1cm of tumor remains as Dr. Anderson spent over 10 hours trying to remove the section of the tumor near brain stem and surrounding nerve structures.

I need to be proactive in radiating the tumor left, however, am at a loss as to where to seek treatment. I am willing to fly anywhere in the country. I feel this next step for me is critical as two surgeries have left much scar tissue and my facial nerves have really taken a beating. (Although, physically, my face looks pretty good). With the exception of Pittsburgh, each reputable facility I speak with doesn't conduct phone consults. Therefore, this makes this process very impractical as one can't fly out to multiple facilities for a 30 minute meet and greet.

Loyola estimated a facial weakness risk factor of 12% with their radiation treatment. I feel this is extremely high; Dr. Konziolka at Pittsburgh estimated a risk of only 3%. Any advice you may offer me would truly mean the world to me as at this point I am struggling to make the best decision to stunt tumor growth and preseve my facial functions being only 27 years old. I welcome phone calls as well and may be reached here via PM.

Other institutions I am looking into include MD Anderson, Mayo in Rochester and Sloan Kettering....
Thanks, Eric

(Eric, welcome. Removing personal contact info as folks can email/PM you here. Thanks! Phyl)
« Last Edit: April 30, 2011, 04:40:59 am by ppearl214 »

Warm_in_MN

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Re: Seeking Best Radiation Facility
« Reply #1 on: May 11, 2011, 04:15:24 pm »
Hi Eric,

I would recommend the CyberKnife team at St. Josephs Hospital in St. Paul. 

I sent them a CD of my MRI and they said they could treat my AN effectively. 

Bob
AN 2.2cm x 1.6cm right side.  Diagnosed 9/09.  CyberKnife treatment at St. Joseph's Hospital St. Paul MN 11/09.  Single Sided Deaf (SSD) Living with Trigeminal Neuralgia since 06/13

LisaM

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Re: Seeking Best Radiation Facility
« Reply #2 on: May 11, 2011, 11:35:35 pm »
Dr. Chang at Stanford is a name that I keep coming across: http://stanfordhospital.org/profiles/frdActionServlet?choiceId=facProfile&docNo=2077

I'm in the process of trying to figure what to do myself.  It seems that many here on this forum have had success with him.  He is also a surgeon so he knows both ends of the spectrum.

Sending you healing vibes...
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

leapyrtwins

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Re: Seeking Best Radiation Facility
« Reply #3 on: May 13, 2011, 05:01:14 am »
My best advice - Dr Chang @ Stanford.

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

nftwoed

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Re: Seeking Best Radiation Facility
« Reply #4 on: May 13, 2011, 09:58:41 am »
Hi;

  There are a lot of places with Drs utilizing similar protocols. University of Pittsburgh Medical Center ( I feel the telephone consult says something about the Drs themselves ) has an excellent track record with the Gamma Knife.
  I don't know much about using radiation at the brain stem. It may be prohibitive in some cases.
  Dr. Link at Mayo is both a Neurosurgeon and GK provider, however, I'd personally choose UPMC over Mayo for AN radiation.
  Best wishes, Eric!

nftwoed

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Re: Seeking Best Radiation Facility
« Reply #5 on: May 13, 2011, 10:27:10 am »
Hi again, Eric;

  Dr. Medberry of St Anthony's Hospital in Oklahoma City will correspond with you. He is quite active on the Cyberknife Patient Forum. You may not have to join the forum to find his email. It is buddy@  I'm sorry, I forgot the rest. Dr. will do either GK or CK. Maybe Google the forum if you are interested, unless someone else here has his email.
  His experience is high.

leapyrtwins

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Re: Seeking Best Radiation Facility
« Reply #6 on: May 16, 2011, 09:19:41 pm »
Steve Gerrard (sgerrard) may have contact information for Dr. Medberry.

You may want to PM him.

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: Seeking Best Radiation Facility
« Reply #7 on: May 17, 2011, 06:44:21 am »
Steve Gerrard (sgerrard) may have contact information for Dr. Medberry.

You may want to PM him.

Jan

Best way to reach Dr. Clinton "Buddy" Medbery is on the CK Patient Discussion Forum, found at www.cyberknife.com/forum.  His username on the forum is "radsrus" (cute, eh?)  Tell him I sent you! :)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: Seeking Best Radiation Facility
« Reply #8 on: May 17, 2011, 10:42:33 pm »
Thanks, Phyl.

Where is Mr. Gerrard  ???  I've been missing him around here  :(

I'm sure I'm not the only one.

Jan

I know, I know, hijack.  Sorry  ::)
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: Seeking Best Radiation Facility
« Reply #9 on: May 18, 2011, 03:46:23 am »
You know us Mods, Jan... always lurking and never know when we will show up. ;)  Hijack forgiven. Phyl

Thanks, Phyl.

Where is Mr. Gerrard  ???  I've been missing him around here  :(

I'm sure I'm not the only one.

Jan

I know, I know, hijack.  Sorry  ::)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"