Newbie who just can't read ALL the posts before asking for help!

[FlyersFan68]

(My research has always indicated that radiation is indeed harder following radiation)

Correction!
 My research has indicated that SURGERY is indeed harder following radiation.


P.S. However, good results are still possible (lower but possible)..... if that bridge was ever crossed.

[macintosh]

Here’s the way the U. Pittsburgh site addresses the question of surgery after radiosurgery:

Beginning of U. Pitt. Statement:
First, is the tumor more difficult to resect if radiosurgery fails? The answer to this is not clear. Few patients have required resection, and the opinions of the surgeons we have asked indicated that some tumors were less difficult, some about the same, and some more difficult. In a report on this issue that included thirteen patients who had resection after radiosurgery, eight were thought to be more difficult. However, five of these eight patients had failed resection before they had radiosurgery.
End of U. Pitt. Statement

There are several reasons why the question of surgery-after-radiosurgery is complicated. As this report indicates, when a treatment fails (first or second time, surgery or radiosurgery), the reason may be that the AN is particularly difficult to reach. The fact that an AN has to be treated for a second time may mean that it was particularly resistant to treatment in the first place.

I think there is a further problem with the phrasing of the question. Asking whether surgery is more difficult after radiosurgery suggests that surgery is more reliable than radiosurgery. This is not true. If the point is to get a realistic risk assessment, other questions should also be asked, such as: Is a second surgery more difficult if surgery fails?

The tumor control rates for radiosurgery meet or exceed the rates achieved by the most experienced AN surgeons, and most failures of radiosurgery occur at the upper reaches of the size range for radiosurgery. This means that for most patients undergoing radiosurgery, the question of surgery-after-radiosurgery is moot. In the unlikely event that the first radiosurgery fails, the backup plan will probably be a second radiosurgery. The question of surgery-after-radiosurgery is worth raising for patients whose ANs are at the top end of the size range for radiosurgery, but treating it as an important question for all AN patients to consider is just another way of trying to make radiosurgery sound less reliable than it really is.

[marg]

Hi macintosh,
     Just wondering if the U. Pittsburg info. you are quoting is a radiosurgery site.  It seems that most often the info.  I read is slanted towards the main treatment provided by the facility.  Are you a AN patient  and have had treatment on your tumor .... or are you someone who works in the medical field providing treatment for AN tumors?  Just wondering where your experience lies. 
Thanks,
Margaret
     

[Dana]

Thank you, everybody, for helping me think these options and probabilities through clearly.  I also got alot of clear thinking from the UPittsburgh site's video "Comparing Options", and other things on that site.  Thanks, Mac. 

I'm glad, in my original frenzy, I made alot of "absolute"-ish kind of statements because in correcting me, you guys have clarified many things and made me dig deeper into research.  I'm thinking that a new thread should be started that stays at the top of the list (like Phyl's thread on WTT) called "Where do I start?" with a basic outline of how to proceed in one's thinking.  First item, for example, might be:

Factors that will affect your decision:
Size of your AN
Location of your AN and what other brain structures it's impacting
Your current symptoms and their relative importance TO YOU
The possible side effects of procedures and their relative importance to you
Your age and health otherwise
Your gut reactions to different procedures
etc.

Overall decisions to be made:
Wait and watch  OR some kind of intervention
If you choose intervention, microsurgery or radiosurgery
If microsurgery, which kind
If radiosurgery, which kind
Which medical team?
etc

Some basic resources:
ANA
ANA Discussion board - each post will give you one little (or big) additional perspective on your decision.
Some sites that the longer-term ANA members agree are accurate
etc

Common abbreviations used:
SSD - single sided deafness
Retro - retrosigmoid microsurgery, one of the choices
Translab - translab_____, one of the choices
GK - GammaKinfe, one of the choices
CK - CyberKnife, one of he choices
etc

Maybe a few examples with specifics - How Brucifer came to his conclusion, Phyl came to hers, etc...a couple of each kind of decision.

Anyway, it's an idea.  Maybe the above is already in some form in the ANA literature which I haven't gotten yet.

______

So, another statement to which some of you will say, "What? !"  I made my decision yesterday to go with GammaKnife.  Scheduled for July 19th.  I've always made life-altering decisions sort of suddently, but after lots of research (or plodding experience), and they've always turned out good for me.  I am a strong believer in instinct-with-intellect. 

My AN (to become my "little mummy" sometime in the next year!) is of a size and location that now is a good time to act.  My husband Clyde and I are retiring to Panama in the next two years, and although medical care is excellent there and I can come back to US for anything I want to medically, I'd rather do something now.  And I have the feeling that my symptoms are getting worse; it could be the stress, but my instinct says it's not just that.

My brain surgery experience with hubby Ted's tumor and Mommy's cerebral hemorrhage (and, actually, Daddy's  parkinson's too) was LESS the fact that they died and MORE the constant one-"solution"-leads-to-another-problem, etc etc etc etc (my folks lived 9 years with these conditions - I'm an only child who loved my parents dearly and lived in the same town they did, so it was a daily experience for me).  That's why the microsurgery is very scary to me.  Not the tiny possibility of death, especially in the case of AN surgery.  Ted's tumor was on the medula (breathing, swallowing, etc) and I personally think that the lights and noise of being in the hospital 2 months is what did him in, but that's another story (which BTW they're starting to study scientifically).  Plus he was in his 70s; who knows what was the real cause.

I won't go on and on with why I made my decision (well...  I already HAVE gone on and on!!!), just wanted you to know.  Wish I could be in Philly next weekend, one of the 'hometowns' of my life that I love, but I'm going to be in a cabin at Mt. Rainier, getting a massage, soaking in the mountain atmosphere that I love.

Hugs,
Dana

[marg]

Hi Dana,
    I'm so glad you have made your decision.  I so agree... go with your intelligent instinct.  Know you will be in my prayers from now through your procedure... and beyond.  It's a great idea to go to Mt. Rainier (I'm from Tacoma originally and love the whole area there) and enjoy yourself.   
Wishing you a relaxed vacation...
Margaret

[macintosh]

Hello Marg--

To reply to your queries--

--I'm an AN postie. I had LINAC radiosurgery for a 7mm AN in January 2007.

--I know that the U. Pittsburgh Neurosurgery Dept. is a leading research and treatment center for GK. I assume they also do surgery. They recommend surgery on their website for large ANs.

--I would not agree that the info on the U. Pitt website is slanted. It seems to me that it reports the primary medical literature pretty accurately.

Mac

[marg]

Thanks Mac,
     Sometimes it is a bit confusing as to where info.  is coming from..... thanks for the clarification.  Just wanted to know if you were connected as a  provider  (sometimes they have different info. to share) or were one of us AN people. 

In the 5 months of research I did before my surgery it seemed that often (not always) the information offered by a particular site had many more positive things to say about their main area of expertise ( whether it was radiation or surgery ).  As my brother (the dentist ) told me...  a doctor usually looks at a medical problem from the perspective of his training and how he could best solve/help the patient. 

I fully believe every individual needs to make their own decision about what they are going to do about their AN tumor whatever they choose to do.  
Thanks again for the reply,
Margaret

P.S.  Mac.  I did not say that the Univeristy of Pittsburg was slanted - I was making a general comment to explain why I was asking you the questions.  Please see below. 

Hi macintosh,
      It seems that most often the info.  I read is slanted towards the main treatment provided by the facility.  Thanks,
Margaret
     
 

[FlyersFan68]

Hello All,
The website for House indicates that surgery following radiation is much more difficult. House has performed the most AN surgeries (of all types) than anyone including Pittsburgh. House should know more than anyone due to experience. House does favor surgery just like the Univ. of Pitt. will favor radiation (just read their websites). My feelings are that a micro patient would probably view the Univ. of Pitt.website the same way a radio patient might view House’s website (leaning towards one direction). Some might think that House just does surgery and that’s all they know but that’s not true. House performs radiation and when I spoke to Brackman three years ago he mentioned that he was GK certified and had been for many years. However, they usually only perform radiation on the elderly. Univ. of Pittsburgh does surgery too but generally suggests radiation first whereas House would suggest surgery first. There is still a great deal of conflict in the medical community regarding acoustics but the good thing is that both radio and surgery are turning out better results than many years ago. If having it removed gives you the peace or having the growth stopped gives you peace then at least you have these options and can get some closure. It’s a stressful event no matter what. In the original thread it was mentioned that the neuro stated that surgery is harder following radiation. People chimed in and said no way their lying find another medical doctor. This concerns me some because my research enforces the doctors comments. I believe people should be well informed not only in the office but with the folks here as well. I have learned so much through this journey and still learning things today three years later.

[macintosh]

The point I was trying to make—and I will try to make it again—is that the question “Is surgery more difficult after radiosurgery?� is a misleading question, something like “When did you stop beating your wife?� It is not a way of providing a balanced risk assessment, which is what AN patients need. It is a way of implying that surgery is more reliable than radiosurgery, which is not true.

I think the real question about the information provided by various sources is not whether a site favors one technique or another but whether the information provided accurately reflects the primary medical literature.

[ppearl214]

It's interesting as how many medical facilities will publically tout the treatment options that they perform most of the time.   As we note here many times, research, research, research what will work best for you at the time you make your decision.  Much of the info can be confusing and feel overwhelming at times.... so you may just want to take a step back, take a deep breath, then dive in again to the info......

Each decision is a personal one... thus, by reading all info provided by treating facilities, as well as speaking to others that have had all forms of treatment, IMO, is the best way to make the best informed decision you can make, regardless of what you choose.

Just my 2 cents/pence.
Phyl