AN Treatment for Psychological Reasons Only

[Nancy Drew]

OK,

I hope I don't get a hand slapping from some of the regulars for asking strange questions.  I just have a weird way of making my way to a decision, and maybe some stupid questions get me there faster.  Just want to see if anyone can relate to this one.  Have any of you had your AN treated (GK, CK, Surgery) when you could have actually stayed in the W & W mode for awhile longer or perhaps indefinitely depending on growth and symptoms.  In other words, did you decide to get treatment merely because it was a psychological factor and you felt the need to do something NOW.  If you did, do you think you made the right decision?  And, how did you get to that decision?  I also wonder how many doctors would even encourage removal for psychological reasons--is that even ethical?

Please, I don't need anyone to tell me that these things grow slowly, time is on your side, etc.  I already know all of this.  Thanks.

Nancy 

[Debbi]

Nancy-

I think you will find that many people here chose to procatively seek treatment rather than "watch and wait."  For many of us, taking action is the right thing to do.  And, I can't imagine that it would be unethical of a doctor to deny a patient treatment, unless thre was a question about the actual diagnosis.  In many cases, our choice of treatment is strictly "psychological" - some people chose surgery because they will just feel better getting the thing out of their head; others seek radiosurgical solutions because it doesn't feel right to have surgery.  And, of course, in some cases, the treatment outcome is driven by the size and locatoin of the tumor.

Each person must go through whatever process is right for themselves to determine what treatment, if any, is right for them.  The fact that this is usually "slow" growing isn't as much of an issue as how it affects your life.

All good wishes,
Debbi - chose surgery and glad of it!

[Esperanza]

Hello Nancy,  
I read your post with interest as I am actually thinking along these lines myself.

As my AN caused major problems literally overnight I am worried that it will have another sudden bleed (no real explanation given as to why it all happened the way it did) and I want to avoid any more nerve damage.  I wouldn't like to generalise about AN's - don't forget the odds of just having one of these things in the first place!
The more I find out the more confused I become - mine only has a small 'tail' of 4mm in the IAC which does "not cover the aperture of the cochlea" so I am wondering how my hearing was affected so suddenly.

My latest MRI (last week!) shows no growth from the original in January but I don't know what it was like this time last year or the year before that when I had no real  symptoms at all (albiet the ones I did get were very minor in the run up to the vertigo attack and sudden hearing loss).  
I am not sure I could now go a whole year without knowing what it's doing...  

Lots on here are doing fantastically well after surgery and other forms of treatment but perhaps that is as much to do with their outlook on life and positive attitude.      At the end of the day though whatever treatment you choose, you do not have to expalin your reasons to anyone else - you are the one who has to live with it!
xx

[Nancy Drew]

Debbi and Esperanza,

Thank you so much for your replies.  I didn't think I would get such compassionate replies so I am thankful for your reassuring words.  During this whole process, I have felt so lost in trying to make up my mind about what to do.  I keep hearing that these ANs are slow growing and time is on your side, but that has never seemed to soothe my soul so to speak.  Esperanza, when you said that at the end of the day whatever treatment you choose, you don't have to explain your reason to anyone else, I just drew a big sigh of relief.  I think I have been looking for those exact words.  You are so right when you say "you are the one who has to live with it!".  Thanks so much for replying to my post.  My psyche thanks you, too!

Nancy


   

[elliemae]

I hope I don't get a hand slapping from some of the regulars for asking strange questions.  I just have a weird way of making my way to a decision, and maybe some stupid questions get me there faster

Hi, Nancy
I have to say "thanks" for those questions!!!  I'm generally more of a lurker here...posting infrequently, but always reading and glad to see someone asks these questions!  I am basically in the same postion right now.  I've been W&W for 2 years, and just in the past 6 months or so am feeling that urge to do something.  I think (no, I know!) that this is occupying more and more of my thinking (including probably too much time reading on this site and others), and so I now I feel I s/b doing something rather than it occupying so much time. Of course, my doctor says that's not a good reason to make this decision!

Good luck in your process, and keep asking questions!
Elaine

[Nancy Drew]

Hi Elaine,

I am glad my questions might be of help to someone.  Gosh knows I've asked plenty.  Can totally relate to spending too much time reading on this site and others.  The only good outcome of having stayed on this site religiously lately is that it has kept my hands out of the fridge, and I've lost 10 pounds in the process.  I really needed to lose those 10 pounds, but I don't want to continue with this "AN Board Diet" forever!!!  However, I could probably go for another 10 pounds!!!  Maybe better to just get out and exercise more and take a breather every now and then to clear out the cobb webs.  You have been W & W for two years so what is the status of your AN--growing, symptoms, etc.  Whatever the case, I hope you find the peace that will lead you in the right direction for YOU.  Although we can relate to each other in a lot of general ways, this is a very personal journey.  Support is good, and I have found that here.  So, thanks all.

Nancy 

[Jackie]

Great question Nancy Drew!!!

I was diagnosed  a year and a half ago with a 9x11 AN, left side. 5 months later had another MRI, which revealed something, that wasn't specific, and only when I questioned that 5mm fusiform something or other, did the doctor feel it necessary to get better clarification. Back to the MRI machine to discover another mass, opposite side. It was diagnosed as a small Meningioma. I was told I would probably never have to deal with it in my lifetime, so not to worry about it. After sending my MRI's to House and to Stanford for expert opinions, the experts were divided. House said small meningioma, and not to worry, however Stanford said another An that should be treated with CK to preserve hearing since the first AN, right side has left me with 40% hearing.. So, had I gone forward with any type of procedure after the first diagnosis, my decision may have been different had I known about the second tumor. I sit presently waiting for my next MRI which had been scheduled for July 6th but I cancelled due to Pneumonia, and coughing which would not allow me to be still! My point is, and I mentioned this to you before, timing is very important if the timing is right for you. As a W and W, I am very apprehensive and emotionally somewhat of a mess. I am not by-polar, but I do get very down about this situation. I need to know for sure what and where this other tumor is for sure, as I have absolutely no symptoms with it. I think your tagline after your name is a good one Wait and Watch and Wonder! I believe that says it all! I wish you the best and look forward to your questions as I find them valid, not silly. You are like alot of us we have inquiring minds and don't blindly follow the advice of the physicians! I praise all the Aner's that have gone before us they have helped pave the way for this journey that is such a challenge.

God-luck to all and much love to all
Jackie

[elliemae]

[The only good outcome of having stayed on this site religiously lately is that it has kept my hands out of the fridge, and I've lost 10 pounds in the process/quote]

Hi, Nancy
Wish that applied to me!!!  I go totally the other way...the more I worry, the more I eat, and all the wrong stuff of course (if it has sugar, I'm into it!)

My AN is 1.44 cm at last MRI in April, growth from 1.3 in 4/06.  I also have hemifacial spasms, which started as eye twitches just about the same time as my tinnitus started.  Both grew worse in synch, which I really didn't realize until a few months ago when I complained about the face getting worse (this is when my treatment research intensified), and my doctor asked about the timeline.  Well, turns out it was nicely matched.  He thinks the "AN" may possibly be a "Facial neuroma", but couldn't tell from the MRI.

I am SSD in the AN ear; that happened within 8 months of my initial diagnosis.  I'm happy to say I have only occasional balance issues... had some unsteady walking 3 years ago, but that sorted itself out.  Brain adjustment???  BUT, I also had a bout with dizziness/vertigo about 4 years ago.  Was diagnosed with something else at the time, and it went away.  I now relate that to this ... but who knows?

Thanks again for your questions to the group.  As you say, there is great support here, all helpful in our individual journeys.

Take care!
Elaine

[elliemae]

OOPS....guess I can't control my "quotes"!

sorry about that...
e

[Jim Scott]

Nancy:

You aren't in any danger of getting your hand slapped by me because I believe your question is relevant.

I didn't have a choice in the decision to surgically address my rather large AN but many do...like you...and the decision is stressful, I know.  I'm almost glad I didn't have the 'luxury' of choosing a treatment.  'Almost' being the operative word.

I agree with Esperanza that the treatment decision is basically psychological in nature and is reached for as many reasons as there are AN patients.  As I read it, your difficulty in making a treatment decision is hardly unusual, just a bit more stressful for you.  Watch and Wait is easy for some but impossible for others.  Some AN patients want the tumor 'out of their head' - now - and others favor the relative ease of non-invasive radiation treatment.  All patients have varying outcomes, from awful to splendid and that muddies the water a bit more when trying to arrive at a sensible, practical treatment decision.

I trust you'll receive enough replies to your question that will help facilitate the decision you'll ultimately have to make.

Jim

[Mickey]

It`s all a personal decision of course. We are all different. My decision was made to W+W from research with other W+Wers, 2 of 10 years 1 of 20years who are still hanging in there. My Dr. tells me he has many W+Wers who do anual MRI`s. Also expressed to me a slim but real chance nothing might have to be done ever. Many people found during autopsies with AN`s who had no bering on there lifes outcome. I also have people in my AN group who chose treatment with great results. That`s what I guess makes this such a personal decision for each of us. Good Luck, Mickey

[leapyrtwins]

Nancy -

not such a strange question.  Although I didn't choose AN treatment over watch & wait for psychological reasons, I actually chose surgery over radiation for psychological reasons.

I'm the kind who couldn't live my normal life knowing that there was a tumor in my head and wondering on a regular basis what it was doing - growing, dying, etc.

Therefore, I chose surgery for peace of mind.  I also chose it for other reasons, but psychologically surgery put a lot of my issues to rest.

I hope you are getting closer to making your treatment decision.  I think that alone would give you a lot of comfort psychologically 

Jan

[goinbatty]

I completely understand where you are coming from.  When diagnosed, my symptoms were very minor and for the most part continued that way.  But on my follow-up MRI, the AN had grown more rapidly than is typically expected.  Even though my symptoms remained minor, I went into high gear researching eventually deciding on CK.  My thought process was attack it while it's small to hopefully prevent side effects of additional growth.  I suppose my decision for CK over surgery was in part psychological in that I have a history of grand mal seizures.   To put it bluntly, I didn't want anyone physically manipulating my brain with a retractor or any instument for that matter.  Now that I'm 6 months out, within the past month I've had some odd feelings in my head that can only be described as bursts of feeling whacky similar to the feeling you get when putting on strong prescription glasses but with no visual disturbance.  Dr. M. said some patients experience this which was a relief.  I can easily deal with that.  But with the history of seizures, my neuro recommended an ambulatory EEG just to be on the safe side.  The funny thing is that within the past couple of days, these bursts have lessened.  Forgot to mention, the 6 month MRI last week showed necrosis for which I was literally thrilled (had the radiologist review it with me).  I'll update you all when I literally have the report in hand. 
Take care and good luck
Sandra

[fbarbera]

There is absolutely nothing unusual about what you are going through Nancy, and you are entitled to go through your own process, however long and complicated.  I know you are struggling mightily with your decision.  One thought I had is that maybe you would benefit from actually speaking to other patients, rather than communicating electronically.  As wonderful as the forum is, there is nothing quite like person to person conversation.  I'm personally glad to talk with you and the ANA puts out a "Willing to Talk" list.  It's just another tool among many.  It just seems you have some more venting and processing to do to get to a final decision and maybe talking to some fellow patients will help.

Just a thought!

Good luck,

Francesco

[GRACE1]

Your question is definitely valid.  There were 5 months between my diagnosis and GK.  I did not feel comfortable staying in the W&W mode because my hearing loss was already at 40% in the AN ear.  I was afraid it would get a lot worse, or go completely away, if I waited.  Since I was not having any balance problems or facial nerve issues, I did not want to give them a chance to start.  As it turns out, I lost another 40% hearing in my AN ear after GK.  But that was a risk I took.  The hearing loss process was already in place.  My AN is going away and I have no problems with balance or facial nerves, so I am very satisfied with how things turned out.  Good luck to you!