Re-growing AN--conflicting options--HELP!!

[MLB57]

 Hello everyone,

I desperately need some advice on my current dilemma--the 1 cm rt AN I had surgically removed Jan 2001 is re-growing  because it was not totally removed (contrary to my Operation Report) so anyway last Fall I had consulted w/Dr Noren in RI for GK and recently met w/Neurosurgeon Dr Barker at Mass General (he said 10% chance of further damaging my facial nerve w/repeat surgery--didn't want surgery again anyway) who referred me to Dr Loeffler (Chief, Radiation Oncology) at Mass General. Dr Loeffler told me there is a FIFTY PERCENT chance of destroying my facial nerve w/one-shot treatment such as GK. He said if I hadn't ever had surgery GK would be okay but because my facial nerve is already weakened he recommends FSR (Fractionated ) w/Lineac--low dose, Mon thru Fri for 6 wks.

I was very unnerved (no pun intended) to hear GK could do this and e-mailed Dr Noren who promptly replied stating in his experience, since 1996 his GK treatments caused no facial weakness in all his AN patients, including ones like me who have had surgery and an already weakened facial nerve. (He HAD told me at the initial  consult my facial nerve wouldn't be harmed..) He said  he felt there was no need for the FSR but it would inevitably be my choice...

I can do the 6 wks at Mass Gen if necessary, trying to work it around my work schedule or if I can't then I will have to take the unpaid Medical leave (which will be hard financially) ...  Tomorrow (Monday) I will Dr Leoffler's office to ask if I can contact him via e-mail--I need to know where he has gotten his stats, etc.

I have the utmost respect for Dr Noren who has been very gracious in his time and was impressed w/Dr Loeffler who is also very confident and personable... But who do I believe???

I am upset as I had planned for GK later this summer so now I have to really rethink that!!!

Any input wouild be greatly appreciated!!!  Regards, Mary from MA

[ppearl214]

Mary,

My phone number is in your inbox here on the site... I hope you use it.  I have a few thoughts and too much for me to type... .all up to you.

xoxoxo
Phyl

[jcinma]

Hi Mary-
I put my phine number in you inbox too. Please feel free to call.
Jane

[MLB57]

Hi Phyl and Jane--Thanks  ever so much for your input and caring--I'll let ya know what I learn--I guess this journey never ends and like life itself has twists and turns!!!!   Thanks agian-- Mary 

[krbonner]

Mary - I just emailed you the papers I have from my neighbor who works on AN radiosurgery patients at MGH.  Let me know if you don't get them.

Katie

[MLB57]

Hi Katie--Thanks ever so much for the info-I actually forwarded it to my work place as my printer at home here isn't working. I called Janice at Dr Loeffler's office last Friday and left a message that I would be home yesterday to pls call me but she hasn't returned my calll yet. So I'll call her tomorrow..

Thanks again --hope you are doing well and your family!!!  Regards, Mary

[pearchica]

Mary: I don't know if CK is applicable or not in your case, but perhaps this is an option? Phyl had it done. I'm sorry that you have to go through this.  take care of yourself- Annie

[krbonner]

Hi Katie--Thanks ever so much for the info-I actually forwarded it to my work place as my printer at home here isn't working. I called Janice at Dr Loeffler's office last Friday and left a message that I would be home yesterday to pls call me but she hasn't returned my calll yet. So I'll call her tomorrow..

Thanks again --hope you are doing well and your family!!!  Regards, Mary

I find I have to nag some of the medical secretaries to get them to follow-up - Dr. Barker's in particular!  I have to call her again today, in fact, to get info from her she said she'd get to me last week.

Sigh.

Katie

[MLB57]

 center]HAPPY EASTER everyone!!![/center

I don't think Mother Nature got the word that it's Spring's turn as it's cold here in MA!!! Some towns are probably rolling around snow balls today instead of easter eggs!!! Oh, such is NE--but I do love it anyway!!  Anyway, thanks Phyl/Jane/Annie/Katie --I finally reached Janice at Dr Loeffler's office (we played telephone tag for days)--I told her my concerns and questions I had for Dr Loeffler and gave her my home e-mail address (she was reluctant to give his to me, which is okay) and am awaiting his response.

Regarding CK, Annie and Phyl--from what I've  read previously is that CK over 3 or 5 days is, each tme, a relatively higher dose than I probably should get as the reason for my proposed 6 wks radiation is to give me a low dose each time so my facial nerve can recover (my word) between shots. (What the dose is each time is one of my questions to Dr Loeffler.)  If CK is done over 6 weeks then that's something I can look into further because the LINEAC accuracy is probably not as good as CK from what I've read.

I'll try to do more resaearch today regarding CK treatment...

Thanks and best wishes to everyone!!     Mary...

[ppearl214]

Mary,

Happy Easter to YOU!!!   Good to hear from you and the updates.

My biggest question would be... how many Gy (Gray) are they recommending for the FSR and the other treatment options you are checking? 

I have faith in you to choose what is going to be best for you.  As to experiencing the actual treatment, you know there are many of us here that can share what it is to be on the treatment table, the sounds, etc... but as for which you choose, know that I am beside you 200%!  Hang in there!

xo
Phyl