Revisiting this site 5 years after GK surgery

[Gill UK]

Hi.
Had great support 5 years ago from this site when I was first diagnosed with 3cm AN, chose GK radiosurgery with very good neuro surgeon in UK (private sector as not radiosurgery not available at that stage locally).

5 yr MRI I am told that tumor is growing. Am still not wanting the surgery option, but maybe have to. Does anyone have any research/evidence on 2nd stereotactic or fractionated stereotactic treatments to share with me?

USA folks & others, please share....in the UK we do not have the information that you have access to in terms of choice or evidence.

Thanks in advance

Gill

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[Bob Partak]

Gill, Great question, but I think your best answer will come from " cyberknifesupportgroup.org"
   As a rule some docs with experience treating cases will respond within a day ao so of your questions. Best of luck to you. Bob

[russ]

Hi Gil
  I've heard of repeat GK a long ways after the initial Tx, say, 13 months?
  But, in thinking, if radiation failed the first time, why repeat it in any form as gamma rays are gamma rays whether produced by a cobalt source in GK or a Linear Accerator as in FSR? With each treatment more scar tissue incurrs and what if in 5 more years it starts to grow again?
  It is standard procedure in some facilities to follow incomplete or failed surgery with radiation and failed radiation with surgery.
  Best wishes for the best choice. Are you old enough and this AN small enough where you can afford to just monitor it for a while?
  I had thought there was a skilled neurology and neurosurgery unit in England. Can't recall the name. Was it Walter? There is an extremely skilled surgeon in Germany who just does ANs. That link is in this forum somewhere.
  Russ  ( in the USA )

[Gill UK]

Hi Russ

Thanks for the reply, this site is so different & sophisticated now....bit difficult to figure out where the messages are!!

Our problem here in the UK, one of our problems, is that we dont have choice in surgeons, some pretense at it at the moment, but on NHS there isnt any. Nobody publishes or makes available any of the league tables in term of treatments per consultant. will continue searching site, thanks for your best wishes.

Gill UK

[russ]

Hi Gil
  Thanks to Raydean:
Germany
International Neuroscience Institute, Hannover. For detailed info see http://www.ini-hannover.de/en/contact.htm which has detailed information about the Institute and how to contact them. Secretary Prof. Dr. M. Samii is Director of Neurosurgery and Radio Surgery (Gamma Knife)
  Best wishes!
  Russ

[john twoffer]

Dr. Ott at San Diego Gamma Knife has repeated GK on patients up to 3 times without loss of the facial nerve last I heard, which was a year or so ago.
I wish I had had Gamma Knife instead of FSR!
My best,
John

[ppearl214]

Hi Gill and welcome back.

I'm sorry to hear the GK didn't go so well... not sure if you saw my post here in the RadioSurgery forum:

http://anausa.org/forum/index.php?topic=892.0

A dear friend of mine in the UK did work and research on GK and I shared her email with all here.

I also concur about the cyberknife support board previously noted here. Been researching all modes of radiosurgery and am fortunate that all forms (GK, CK, Proton and Novalis) are performed here in Boston, so I spoken to many and such. More than happy to share any of my research with you.

I'm personally not sure about re-GK treatment after already performed but CK may be an option as well.

BTW, my cheeky bloke lives in SE London/Brixton (Herne Hill) and I'll be back there in May.  Will also be in Shaftesbury and N. London-Camden.  Love to share a pint with ya!

Hang in there. We're all here for ya!
Cheers,
Phyllis

[lmurray69]

your tumor is pretty big isnt it do you have a lot of problems with it mine is 9mm still small but cause a lot of problems ...My tumor is on my ballance nerve. and I have TIA's  have had 8 in a year...I had the gn in feb a year ago and wish i had had the surgery , now i want the surgery and cant find a surgeon...they say i am high risk..Its a risk just getting up in the morning...wish you the best   Birdlady

Thanks in advance

Gill

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