Author Topic: The best treatment  (Read 3066 times)

para1

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The best treatment
« on: January 23, 2011, 03:59:52 pm »
I am newly diagnosed and I have been doing alot of research.  I am going to a specialist tomorrow and I was just wondering what makes the doctor choose Gamma knife or surgery?  Are there long term effects to Gamma knife.  I'm afraid of radiation and would almost rather surgery.

Larry

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Re: The best treatment
« Reply #1 on: January 23, 2011, 04:09:34 pm »
para,

This is a huge topic and there are thousands of posts on the pros and cons of both. My sceptisism tells me that surgeons promote surgery coz of the $. But before everyone tells me off on this one, there are a couple of major pre determining decisions you need to make which will guide you to the most appropriate treatement for yourself.

1. If you have a striong aversion to either surgery or radiation then go with the other.
2. Research both options as to specific doctor / technician percentages. that is, medicos will give you industry percentages for success, facial paralysis shrinkage etc. Don't accept industry data, ask for that doctor's percentages.
3. Review the many posts on this forum on this topic and remember, everyone is different.

One given is that there is also a financial and job impact. Surgery will keep you off work for around 6 weeks post surgery (at best). radiation treatment - I had mine over 5 days and went back to work after each treatment.

laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

para1

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Re: The best treatment
« Reply #2 on: January 23, 2011, 04:29:12 pm »
Thank you for your comment.  What makes me nervous about radiation is that I'm afraid there will be a long term side effect and something coming up years from now about people who had radiation.  My aunt had it for ovarian cancer and she was never the same.  The radiation destroyed her intestines in the process.  I am also afraid of regrowth.  I know that even with surgery there is a chance of that.  At this point, i know it's there and i want it out.

Jim Scott

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Re: The best treatment
« Reply #3 on: January 23, 2011, 04:33:10 pm »
Para ~

Although doctors that specialize in surgery or radiation will be likely to have a natural bias toward their specialty, not all do.  My neurosurgeon was eager to have me undergo debulking surgery (by him), then radiation (FSR) by a radiation oncologist (with the neurosurgeon's input, of course).  As for what determines a doctors recommendation on purely medial grounds; the size, shape and location of the tumor as well as the patients age and general health are all factors.  However, the final decision on treatment is yours, alone.  If you prefer surgery over radiation (or vice versa) it is your prerogative to request it.  Unless a doctor feels your health might be jeopardized by either surgery or radiation, he'll honor your decision.  Frankly, most doctors will not make the treatment decision for you, although they'll try to persuade you one way or the other.  That is how it should be.  Remember that whatever the outcome of whatever treatment you may chose, you're the only one who will have to live with the outcome.  That is why we advise those newly diagnosed with an acoustic neuroma not to be hasty in making a treatment decision or simply accept as 'gospel' whatever the man or woman in the white lab coat with 'M.D.' after his/her name, tells you.  Do your own, independent research (easy, now, with the internet) seek more than one medical consultation and be very confident in your doctor and, most of all, your treatment decision.   I wish you success in your upcoming consultation.  Please keep us updated.  Thanks.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

CHD63

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Re: The best treatment
« Reply #4 on: January 23, 2011, 09:13:27 pm »
Hi Para and welcome to this forum.  I am so glad you are posting and asking questions.

Jim has given you an excellent answer regarding radiation vs surgery.  As he said, it often comes down to what you are most comfortable with.  After weighing the information you are gaining, at some point it will be clear to you what is the right answer.  Just remember it is your decision.

What symptoms led you to seek medical help and the discovery of your AN?  Did your doctor tell you any specifics of exactly where your AN is located (crowding the brain stem, entirely in the auditory canal, etc.)?  Sometimes that is a factor in which treatment you choose.

Many thoughts and prayers as you wade through this maze of information.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

wcrimi

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Re: The best treatment
« Reply #5 on: January 24, 2011, 05:57:19 pm »
When I went for my first consultation it was with a surgeon. Naturally he recommended surgery, but he was willing to recommend someone for me to see to get a second opinion that did radiation.  I thought that was a pretty good approach because I got a chance to hear both sides of the story from someone. 

The preference has a lot to do with size, location, age and personal comfort assuming you even have a choice.   

I was simply more comfortable with getting it out of my head, being done with it, and the more limited follow up required via surgery, but I could easily understand how someone would choose the other path.     




 
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

leapyrtwins

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Re: The best treatment
« Reply #6 on: January 25, 2011, 09:34:01 pm »
Treatment decisions are very personal choices and you need to do what you feel is best for you - after educating yourself and talking to experienced doctors who treat ANs.

I didn't choose radiation, for lots of personal reasons, but keep in mind that radiation is not what it used to be.  Lots of the "bad press" about radiation has been proven unfounded and procedures/techniques have changed for the better.

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