Ramblings about the GUT feeling ...

[Jeepers]

Most major decisions in our lives are somehow based on this, right? RE: ANs, we do research, talk to doctors and [online]friends in similar dire straits and start formulating a gut feeling about which way we will probably go. Options for treatment, statistics, and pt. individuality are pretty much all over the place, and once we become aware of them, it basically comes down to what our gut is telling us to do.

I sit here and read through radiation threads. I read about surgery. A questions arises and I bounce over to balance issues. When real fear strikes, I start picking apart the facial paralysis threads.

I bring this up because when I was diagnosed 6 yrs ago, I met with two different AN surgeons in the area. One was set against radiation, but I had/have a great deal of respect for his reputation and talent. The other also suggested surgery, but did not totally discount radiation as an option. At that time, I did not see any radiologists to discuss their procedures. Both surgeons agreed wait and see was a very reasonable choice for me and that's just what I did, with absolutely no regret.

So here I am, with a new MRI showing growth and my neurotologist recommending action - either surgery or radiation. He has, in the past 6 yrs, started doing GK himself, in addition to surgery.

Even though I chose to wait and see, as soon as I heard the tumor was growing and a choice had to be made, my gut was telling me "surgery". Each day I awaken from a previous day of research, I wake a bit more confident that that is the route for *me* to take. Don't get me wrong .... I'm scared. But I try to put that out of my mind, as if to forestall anthing bad happening. Stay positive ... and get scared all over again.

Although I find strange comfort with this gut feeling, I'm also somewhat puzzled by the fact that I ... someone who researches and picks apart all types of alternatives in life ... have not taken the initiative, or actually don't really have the desire, to talk to the radiation folks. Perhaps I don't believe they will change my mind. Perhaps I'm afraid they will throw my resolve out the window and make this an unbearable decision to make.

Have any of you just automatically gravitated to one option over the other? My guess is everyone probably saw a surgeon about their AN first and surgery either immediately and understandably scared the carp out of them, then proceeded to radiology docs, who allayed their fears and *set* their gut feeling. I'm sure most surg peeps probably did follow through with a radiology consult (yes?), but went back to surgery because their reality ... their "gut" feeling was that option.

I'm curious how and at what point in your research did your gut feeling kick in ... and, importantly, did it ever change once it did?

Thanks, folks 

[ppearl214]

I knew in my soul of souls which direction I wanted to take once I began my research (like you, my drs told me it was growing and best to act on it sooner than later).  My gut.... my female intuition... whatever you want to call it... was my guide in trying to make the best decision I could. In my case... I knew I self-educated as best as I could.. and even during my research process... my gut kept leaning one way.... I continued my research processes.... and my gut was still insistant on what it wanted to do. When it all came down to it... I sat, with a Pros/Con's list, in black and white... sitting in front of me.. staring back at me... and my gut was talking loud.  I listened... and in my personal case... it paid off.

Do what you feel is best for you... your situation... and listen to your gut... it may or may not be wrong, but it always looks out for you.

Hang in there.
Phyl

[Lilan]

I have felt the same way and have concluded that even if your gut is clear and right, it doesn't mean you won't have moments of fear or doubt that make you say THIS IS CRAZY!, whichever you choose.

We have to set a course of action based on the weight of evidence and then not let whim knock us off course. Your gut may have guided you one way, but it doesn't put blinders on you, either. And the consequences of this particular decision are SO serious, it's natural for other ideas to still bubble up.

Your gut doesn't mean your passing whims -- it means the internal stew of research, instinct and all the individual factors that guide us one way.

When I read about DLM4Me's post-surgical problems,  WHAM! I thought I was crazy for having surgery. When I heard of Alicia's pain  , WHAM! again: What am I, nuts...?

But then I realize I can't walk a block without feeling like I'm on very wobbly rubber... and I know I have to take the one chance at putting this behind me. (In my case, radiation was not recommended; it's either try to live with it and stall treatment as long as psosible; or just do it -- so I ultimately didn't have the same "choice" to make anyway. But there are days I try to convince myself I'm not so bad, I can function, so why not wait...)
 

[CHD63]

The Wait and Watch for me would have been agonizing ...... I wanted that thing out of my head ....... but that was my gut.  At the original appointment when I learned the diagnosis, I was in such a state of shock, I could not even think of good questions to ask.  My ENT suggested checking out all of the possibilities and set me up with three different appointments (my 2 cm AN was borderline for radiation), one with a neurosurgeon and two with possibilities for Gamma Knife/radiation.  Like you, I stayed glued to the Internet for research on the choices/outcomes, etc.  I also checked with all of my medical family members and friends for advice.  As it turned out my first appointment was with the neurosurgeon.  After comparing the current MRI with one done just the year before, and finding no evidence of the AN the year before and a 2 cm AN one year later ..... it was rather obvious that I had an unusually rapidly growing AN.  Putting his advice, my research, my medical friends' advice, and my own gut feeling all together, it really was a no brainer for me and I cancelled the two appointments regarding radiation possibilities.  My retrosigmoid surgery was 10 days later and I do not regret my decision for one minute.  I had 80% hearing left in the AN side prior to surgery, 20% since (now very functional with the use of a hearing aid).

As many of us have said, agonizing over the decision is the hard part.  In my opinion, you have done your homework, now follow your gut!

Good luck and keep us posted!

Clarice

[Jeepers]

Thanks for your post, Phyl ... I'm glad to hear a similar scenario from a radiation gut feeling. What you describe is hitting very close to home.


And, thank you, Lilan!! I see you're nearing your trip to House. I hope you're finding an effective way to distract yourself in the next few weeks. I like your interpretation of a gut feeling - but I will admit I'll be checking out DLM4Me's (sp?) post-surg post    I found one of her pre-surg and she seemed to be very frazzled by past situations and the upcoming AN surgery. I hope she was able to calm down and accept her decision ... I will check.


It suits me so much better to think on the positive side of this. Every so often there's that little voice in the back of my head whispering, "What if things are never the same?" ... It's a voice I'm mostly ignoring. I always think of cancer and how much worse it could be ... or I think of some young mom or dad or a child ... and know in my gut that this will not become an impossible cross to bear.

[Jeepers]

The Wait and Watch for me would have been agonizing ...... I wanted that thing out of my head ....... but that was my gut.  At the original appointment when I learned the diagnosis, I was in such a state of shock, I could not even think of good questions to ask.  My ENT suggested checking out all of the possibilities and set me up with three different appointments (my 2 cm AN was borderline for radiation), one with a neurosurgeon and two with possibilities for Gamma Knife/radiation.  Like you, I stayed glued to the Internet for research on the choices/outcomes, etc.  I also checked with all of my medical family members and friends for advice.  As it turned out my first appointment was with the neurosurgeon.  After comparing the current MRI with one done just the year before, and finding no evidence of the AN the year before and a 2 cm AN one year later ..... it was rather obvious that I had an unusually rapidly growing AN.  Putting his advice, my research, my medical friends' advice, and my own gut feeling all together, it really was a no brainer for me and I cancelled the two appointments regarding radiation possibilities.  My retrosigmoid surgery was 10 days later and I do not regret my decision for one minute.  I had 80% hearing left in the AN side prior to surgery, 20% since (now very functional with the use of a hearing aid).

As many of us have said, agonizing over the decision is the hard part.  In my opinion, you have done your homework, now follow your gut!

Good luck and keep us posted!

Clarice

WOW, Clarice! I can understand your panic ... 2cm in a year's time!! I'd have been in surgery quickly too!
I was 1 cm when diagnosed and both surgeons independently agreed waiting was fine. I figured I'd just take it yr by yr and it bought me 6+ additional years of hearing. Now my hearing is so bad and so annoying that I'd almost welcome the loss on that side (I hope that doesn't sound terrible). I am concerned about my balance though. Thanks for posting and thanks for your good wishes!   

[ppearl214]

Jeepers, glad to help.

Now, I really REALLY had to dig for this (granted, I've had a few posts here and there)... so, if you are bored... some bathroom reading material

http://anausa.org/forum/index.php?topic=847.msg6234#msg6234

You can see how I challenged my gut... and how it lead me to my decision.  May be worth a peek.  It's a long one... pour your fave beverage when you go to read it.

Phyl

[sgerrard]

I think the same thing, and said so last year:

"For many people, the choice between radiation and surgery comes from the gut....If you fall into one of those camps, and I think most people secretly do, then you will end up deciding accordingly. I think that happened to me, and to others I have talked to, and I think it is just fine. It is essential that you believe in your treatment plan, and your doctors. Don't beat yourself up over it; just go with your instincts."

http://anausa.org/forum/index.php?topic=3929.msg64193#msg64193

Steve

[Jeepers]

Wow, Phyl ... 14 pages!! I'm gonna have to pace myself  

It looks like an interesting read - right up my alley. Thanks for the link!

[Jeepers]

I think the same thing, and said so last year:

"For many people, the choice between radiation and surgery comes from the gut....If you fall into one of those camps, and I think most people secretly do, then you will end up deciding accordingly. I think that happened to me, and to others I have talked to, and I think it is just fine. It is essential that you believe in your treatment plan, and your doctors. Don't beat yourself up over it; just go with your instincts."

http://anausa.org/forum/index.php?topic=3929.msg64193#msg64193

Steve

Hey, Steve ... thanks for that post, too. An excellent chronology!


I did have to chuckle at bit, though at:  "I leave thinking it will be a small operation, perhaps as an outpatient in the office, and go to see the ENT."

 

[MAlegant]

I totally believe in the "gut feeling" theory.  I really didn't have much of a choice between radiation and surgery, though one doctor I met with would have done GK.  My gut also told me "surgery". Turned out the tumor had wrapped itself around a bundle of nerves (hearing, facial, trigeminal, and balance) and radiation would have done some serious damage.  I had a very good outcome with surgery considering the size of my tumor.  Good luck.  Best wishes, Marci

[Jeepers]

Thanks, Marci! 

[stoneaxe]

I took the reasoned, logical, do the research, compare pros and cons, read all available data/statistics approach the 1st time around and it turned out to be the wrong decision (for me). My gut is saying get the damn thing cut out of there this time. Of course I have a much better educated gut this time around so it may just be all that info has had some time to ferment and the decision comes quicker.

[Kate B]

I sit here and read through radiation threads. I read about surgery. A questions arises and I bounce over to balance issues. When real fear strikes, I start picking apart the facial paralysis threads.

I bring this up because when I was diagnosed 6 yrs ago, I met with two different AN surgeons in the area. One was set against radiation, but I had/have a great deal of respect for his reputation and talent. The other also suggested surgery, but did not totally discount radiation as an option. At that time, I did not see any radiologists to discuss their procedures. Both surgeons agreed wait and see was a very reasonable choice for me and that's just what I did, with absolutely no regret.

So here I am, with a new MRI showing growth and my neurotologist recommending action - either surgery or radiation. He has, in the past 6 yrs, started doing GK himself, in addition to surgery.

I can identify with your entire post and have so much too say that I will try to keep it short:  But oftentimes my "Pay it Forward" attitude keeps me writing and writing.

You bring up an interesting point and one that we often put to the side relative to rec's by doctors.  Even if a doctor recommends or discusses both radiation or surgery, they have a preference.  Why? because if they have invested time and resources into a treatment, they are going to recommend it. So your doctor who is now doing GK in addition to surgery will of course now recommend radiation. He has made a financial committment.  Even when a doc "recommends" both, through his/her actions, tone, facial expressions or amount of what they say or lack of what they say...it becomes apparent that they lean toward a preferred course of treatment.  And I hate to bring up the elephant in the room...both sides use the "fears" of the other treatment...For example, surgeons use "long term effects of radiation" and  radiation treatment folks use facial nerve. 

My fact finding pointed toward this:  doctors have a preferred type surgery or two (all do translab and then they tend to prefer retrosigmoid or middle fossa) or a preferred type of radiation treatment.  All have their own ways of justifying their treatment.  But when the lights go out, they are in their own homes and each of us is in ours.  It is often discussed about how a doctor defines "successful" outcome...It may or may not match our best hopes as patients.

I will continue with my reaction to gut in the next post:-) Trying to keep it short!
Kate

[ppearl214]

Wow, Phyl ... 14 pages!! I'm gonna have to pace myself  

It looks like an interesting read - right up my alley. Thanks for the link!

it was my journey... same issues as you... the discussion of "going with the gut".. and you can see how many asked me about "what is your gut telling you?". So, yes, a very long read but..... great suggestions given to me by many, some that are still participating on the site....  

Phyl