Author Topic: Decisions, Decisions  (Read 5107 times)

Tamara

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Decisions, Decisions
« on: February 26, 2008, 05:53:36 pm »
Hi again groupies!
 
  I am recently diagnosed, with a 7 mm AN.  I have appreciated the responses I got to my previous posts, and have enjoyed wading through a lot of the posts.
  I am still trying to figure out what to do.  My major constraint is that if I choose surgery, it will have to be in summer, so that my teenage sons can help me with my disabled 10-year-old daughter.  My husband can take off the first week, but that's about it.  So, I am trying to decide.  One day I lean towards surgery, the next day towards radiation, and the following day, towards putting it off until summer of 2009.
  My dr is recommending surgery, even though he also does CK.  I asked a whole lot more questions today, and found he has done over 300 surgeries, and recommends the fossa.
  I have an appointment with a radiation oncologist and neurosurgeon (at the same time) in 2 weeks.  I was unaware when I made the appointment with these guys that the first dr. also did CK.  Still, good to have a 2nd opinion.

  So here is my thought as of today:  after reading many (dozens, at least, if not hundreds) of the posts, I come up with the feeling (and it is just a feeling, mind you), that those who have chosen CK seem more nervous about their followup MRIs than those who chose surgery.  While I would dearly like to actually have a summer, as opposed to having surgery, I also want to feel like I am DONE with this after whatever I decide to do.  So, how do those of you who have had CK feel?  Do you feel like this chapter of your life is closed, or does it feel like you are always waiting for the other shoe to drop?  And those of you who have had surgery??

  My dr. feels that there is a very low chance of my having complications - I currently JUST have hearing loss - no other symptoms.

THANKS!! :-*
Tamara
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

Esperanza

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Re: Decisions, Decisions
« Reply #1 on: February 26, 2008, 06:09:44 pm »
Hi,
I am right with you with the should I go for surgery or radiation, what a rollercoaster this AN journey is!  I have an AN 10mm but my specialist has recommended wait and watch (I have hearing loss too) but I don't think I can do this wait and watch thing long term (I am 44 - maybe I would if I was in my mid-50's onwards but then I think if I was that sort of age it would be an easier decision to go for radiation - I am in the UK and cyberknife is not available here yet)
To be honest most of the time I feel I just want shot of this thing before it does any more damage and to be able to move back to some normaility....

x

Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

LADavid

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Re: Decisions, Decisions
« Reply #2 on: February 26, 2008, 07:56:56 pm »
Hi Tamara
I'm not versed enough to give you an opinion of any sort but I can give you the factor in making my decision -- I wanted to get rid of it.  I'll be 60 soon and I didn't want anything more to be potentially complicating the normal old age ailments.
David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

leapyrtwins

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Re: Decisions, Decisions
« Reply #3 on: February 26, 2008, 10:37:19 pm »
Tamara -

I chose surgery and, right or wrong, part of my decision was my personal need to have the AN removed.  I didn't want to worry about the results of future MRIs.  I wanted the AN taken out of my head; end of story.  There is no guarantee that my AN won't return, but chances are good it is gone forever.  To tell you the truth, I haven't even entertained the possibility that my first annual MRI will show regrowth.  I may be deluding myself, but I'm comfortable with the docs telling me that they got it all.   I'll be scheduling my MRI in a few months and I am not the least bit anxious about it.

On the other hand, I know that for me, I couldn't feel this comfortable if I had radiation instead of surgery.  It's just the way I am and the way I look at things.  In making my treatment decision one of the things I worried about with radiation was the possibility of the AN not "dying".  Although odds were good it would "die", I didn't want to wait for evidence of that death through MRI results.  I didn't want to think that every little twinge or headache might mean my AN was growing again.

I want to stress that this is my reasoning and that people look at things differently.  Those who have had radiation might not be able to relate to my way of thinking.

You need to do what is right for you.  You've probably read that repeatedly on this forum, but it's true.  Look at the pros and cons of each treatment and decide what you want to do. 

Making your treatment decision isn't easy, but you'll know what it "feels" right.

Good luck,

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

sgerrard

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Re: Decisions, Decisions
« Reply #4 on: February 26, 2008, 11:22:45 pm »
Tamara,

All of us have had one big surprise from an MRI, and from our first one in most cases. So it is natural to be wary of another MRI - what if this one has another surprise? I think that is the main thought I have, with my first follow up MRI coming up in March.

In my case, because I was below 1 cm, the real choice was radiation now, or watch and wait, and do surgery later. I'm sure I could have gotten surgery right away, but the doctor's advice would have been to wait a while - for another MRI, in fact. I wanted to act because I wanted to try and preserve the remaining hearing on my left side.

I met a man at the recent Portland ANA meeting who is 89, and has been watching and waiting for 6 or 7 years now. He is getting impatient, and thinking about doing radiation, as he is not a candidate for surgery. Even though it is tempting to suggest he just wait it out, I can understand how he would want to do something - it is just no fun having that going on in your head.

It is certainly the case that with radiation, the effect takes time, so the first couple of follow up MRIs can be - how shall I say it - interesting, I guess. Unlike having a surgeon tell you as you wake up that "everything went well", you don't really get that from the doctors until six months or a year later. The wait can be a bit nerve wracking.

However, I felt done with it the day I made the decision. I don't fret about it, it will turn out however it is destined to turn out, and I have done my part. In the end, you can't actually determine what the outcome will be, no matter which way you go. I remember the days when I was like you are now, going back and forth, and not being sure. I can't say how it happened, but gradually it became clear to me what I was going to do, and one day I just knew it. That day will arrive for you, too.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

BDB

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Re: Decisions, Decisions
« Reply #5 on: February 27, 2008, 11:34:11 am »
I go for ck tommorrow,for me the decision wasn't to hard.With surgery or radiation Ans can still possibly grow back.With surgery theres a greater risk of infection,csf leaks,or other complications as with any surgery.My AN is on the small side,and my doc who also is a surgeon reccomends CKor gk,over surgery for small tumors.He would do surgery for larger tumors.Its a decision thats personal for each individual,Im'not overly concerned with follow up mri's,as I feel its gonna die,and they will only confirm that.I guess we make our decisions on the best available info and how it is presented to us,whats right for me may be wrong for you.Whatever you decide just have faith its the right decision,and try not to second guess yourself,do what YOU feel the most comfortable with.I wish you the best in making this difficult decision.
Bruce
1.2 cm an rt.side CK MAR.08

Jim Scott

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Re: Decisions, Decisions
« Reply #6 on: February 27, 2008, 04:21:58 pm »
Tamara:

Choosing a method of treatment for an acoustic neuroma is always difficult because there are no absolute guarantees, no matter what you decide.  Yet, at some point, a decision must be made.  Obviously, radiation is less invasive and easier, in terms of being a one-day procedure, often performed as an out-patient or else requiring an overnight hospital stay, at the most.  Being less than enthusiastic about hospitalization and having my skull cut open, had I been given the option, I would have chosen radiation to address my AN.  Unfortunately, by the time I was symptomatic enough to realize something was seriously wrong, my AN was quite large and surgery was the only option, followed by FSR.  Fortunately, by the grace of God, my neurosurgeon was an all-star and his surgical team were all equally skilled.  I had very few post-op complications and came through the entire surgery/radiation process quite well, considering the many pitfalls inherent in having both surgery and radiation.

Frankly, I never really feared having follow-up MRI scans as I was repeatedly assured that this two-tiered approach (surgery + radiation) was 100% effective when implemented at other facilities (i.e. Boston).  After some initial swelling from the radiation (which was wholly uneventful) my AN showed both necrosis and shrinkage.  Naturally, both doctor and patient (me) are elated.

For your relatively tiny AN, I would choose CK.  I say this light of the fact that your husband cannot be off work for more than a week.  Most AN surgical patients are in hospital for 5 days, more if any complications arise such as CSF leaks, etc.  As a former surgical patient, I can tell you that you'll be 'out of it' for a few days, minimum, when you arrive home following your discharge from the hospital, due to the residual effects of the anesthesia, medications and the general trauma your body has undergone from the invasive procedure removing the AN entailed.  The recuperation process can be maddeningly slow, although everyone seems to differ a bit.  However, CK is not a panacea.  If you've read these posts, you'll see that some CK patients have complications - and some don't. The possibility of re-growth is always an issue for CK patients but of course, the surgeons who confidently tell you "we got it all" following surgical removal of the acoustic neuroma are sometimes mistaken and re-growth happens.  Also, with surgery, sometimes the AN is so wrapped around vital nerves that actually removing "all of it" inevitably results in nerve damage and the resultant facial paralysis and other unpleasant ramifications that so many suffer with.  This is why my neurosurgeon went the surgery/radiation route with my AN.  He debulked it (which made it small enough to effectively radiate) and also cut off the bugger's blood supply, and the very-carefully-and-precisely mapped FSR treatments (26 in all) did their intended damage to the remaining tumor's DNA and so, it is dying and shrinking, even as I type.  :)

It's definitely a tough call Tamara, but I would vote for CK in your case, based on the size of your AN, the fact that you're practically asymptomatic and you are limited as to the amount of aftercare you can receive following surgery.  Of course, waiting-and-watching is also a perfectly acceptable option, too.  One you may wish to seriously consider as the AN may 'stabilize' and 2009 could be a better time to have it surgically removed - or radiated - whatever you choose.  Again, I 'vote' for CK with watching-and-waiting second choice and surgery a distant third choice.  Of course, the final decision is yours and your's alone.  This is simply a concerned bystanders opinion and not in any way based on any serious medical knowledge or expertise. 

I wish you well as you mull your options and move toward a decision. 

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.

Kate B

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Re: Decisions, Decisions
« Reply #7 on: February 27, 2008, 10:40:15 pm »
Hi Tamara,

As you can see there are plenty of ways to approach the decision making process. I've tried to explain it in a "Guide through the decision making process". http://anausa.org/forum/index.php?topic=5786.0

Size is not a factor in your case.  All options appear to be open to you.

Size was not a factor for me either. I had to drill down and really prioritize my best hopes-- what was important to me.
For me I wanted to first try to preserve my facial nerve and secondly my hearing.
I decided that peer reviewed studies were important. I wanted the tried and tested.
I wanted an expert and was willing to travel.
For me, I wanted it out if possible. 

My decision: 

For me, I decided against wait and watch as my tumor was borderline small/medium.  I thought that being that it was found when itwas 1.5 it was also large enough to take action when I could pick from the treatments.

 If it was  greater than 2 cm and under 3cm I would have done radiation at UPMC. With that size tumor, facial nerve preservation was high likely. ( note: In 2001, CK was only a few years old.)

If it had been greater than 3 cm, translab surgery was the option...(however,debulking and radiation are more prevalent now.)

Because it was under 2cm, I chose surgery and middle fossa in attempt to preserve my facial nerve (good stats under 2 cm) and my hearing. Middle Fossa removed the growth and the surgery data was peer reviewed. I decided to travel to House where the surgery was invented. I did not mind the short term inconvenience of being away from family and friends for the two weeks for a probable long term outcome.  I preserved my facial nerve and much hearing (80% high frequencies and 50% low frequncies with 84% word discrimination)
That was my rationale.

Surgery and radiation are both serious decisions.  In surgery, they open your skull and in radiation.
they are using "radiation". It takes a long time  to know the results as it damages your cells;you may not know the final outcome for a couple of years.

The good news is that we  have options which complicates decisions at times. I am a firm believer in "One size does not fit all."

All the best.
Kate


« Last Edit: February 28, 2008, 07:25:37 am by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

jb

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Re: Decisions, Decisions
« Reply #8 on: February 28, 2008, 11:54:25 am »
Quote
...those who have chosen CK seem more nervous about their followup MRIs than those who chose surgery
Quote
So, how do those of you who have had CK feel?  Do you feel like this chapter of your life is closed, or does it feel like you are always waiting for the other shoe to drop?

I can only speak for myself and I'm only 6 months post-CK, but I actually felt less nervous about my first post-CK MRI.  The MRI's while I was in wait-and-watch mode and still had the decision hanging over my head were the most stressful.  In retrospect, waiting and watching with a 2 cm AN probably wasn't the best strategy for me, but that's another story.  Since I've completed treatment I feel like there's nothing more I can do and I just have to wait for nature to run it's course, which is going to take some time.  At this point, I actually look forward to MRI's (weird, I know) just so I can see how things are progressing in there.  I've had fluctuating hearing in my AN ear both before and after CK, so hearing tests are what cause me the most apprehension now; not knowing if my hearing will get better, worse, or stay the same.

If you're interested, I posted my before and after CK MRI's in another thread: http://anausa.org/forum/index.php?topic=5579.0
I don't know if my results are typical, but my doctors have been pleased with the response so far.

« Last Edit: February 28, 2008, 12:02:56 pm by jb »
2 cm right-side AN, diagnosed July 2006
Cyberknife at Georgetown Univ. Hospital, Aug 2007
Swelled to 2.5 cm and darkened thru center on latest MRI's, Dec 2007 and Mar 2008
Shrinking! back to 2 cm, Aug 2008
Still shrinking (a little), I think about 1.7 cm now, Aug 2009

ppearl214

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Re: Decisions, Decisions
« Reply #9 on: February 28, 2008, 12:18:56 pm »
going to "piggy-back" jb's post in follow up, re: my situation.

I was definately not nervous about my post ck mri's... if anything, it was a positive nervous anxiety.  I knew we hit the "brain booger" in treatment and if anything, I was excited to hear the news that continued tumor death was occuring and no size enhancement.  Again, that is how I approached it.......

for me, I do feel a chapter of this book has closed. For me, I keep the reality in the back of my mind that AN's do, on occassion, reoccur and yes, it could happen, but I also refuse to be an ostrich and live with my head in the ground in fear of a regrowth. I forge forward with my life.... and in all honesty, my participation as a Moderator here does keep AN in the forefront in my life (would love to hear how JoeF feels about that as well.......but, note... it is a postiive, not a negative!!! :) ).  As many here know, I have extreme multiple medical whoas and for me, I do get to put my own personal AN in the backround, now approx 2 yrs post CK...... but I'm glad you all help to keep it in the forefront for me..... it truly is a good thing (hint: keep a look out for the March 2008 ANA newsletter..... it will elaborate on what I just wrote!)

Be well all!
Phyl

Quote
...those who have chosen CK seem more nervous about their followup MRIs than those who chose surgery
Quote
So, how do those of you who have had CK feel?  Do you feel like this chapter of your life is closed, or does it feel like you are always waiting for the other shoe to drop?

I can only speak for myself and I'm only 6 months post-CK, but I actually felt less nervous about my first post-CK MRI.  The MRI's while I was in wait-and-watch mode and still had the decision hanging over my head were the most stressful.  In retrospect, waiting and watching with a 2 cm AN probably wasn't the best strategy for me, but that's another story.  Since I've completed treatment I feel like there's nothing more I can do and I just have to wait for nature to run it's course, which is going to take some time.  At this point, I actually look forward to MRI's (weird, I know) just so I can see how things are progressing in there.  I've had fluctuating hearing in my AN ear both before and after CK, so hearing tests are what cause me the most apprehension now; not knowing if my hearing will get better, worse, or stay the same.

If you're interested, I posted my before and after CK MRI's in another thread: http://anausa.org/forum/index.php?topic=5579.0
I don't know if my results are typical, but my doctors have been pleased with the response so far.


"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

EImperati

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Re: Decisions, Decisions
« Reply #10 on: March 15, 2008, 09:44:34 pm »
Tamara,

I was recently diagnosed with a 1.2 cm AN and in the process of seeing doctors, so, I cannot provide any feedback to your concerns.  I'm meeting with Drs. Henry Brem and Michael Holliday at Johns Hopkins and Dr. Ladislau Steiner, at UVA.  Your doctors have extensive experience in ANs.  Would you please share their names?

Many thanks,

Edward

elderbirds

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Re: Decisions, Decisions
« Reply #11 on: March 16, 2008, 09:31:48 pm »
Edward,
Where are you located?  I am having surgery with drs Holliday and Weingart at Hopkins on April 2nd.  They have extensive experience with ANs, let me know how your consults go.
Hope

Tamara

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Re: Decisions, Decisions
« Reply #12 on: March 17, 2008, 08:38:09 am »
Edward - the drs are Steven Harvey and Kenneth Reichert.  If you Google them, there is a transcript of a symposium they gave on the surgical treatment of AN's.  I figured that was a good sign.

Tamara
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

gordy

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Re: Decisions, Decisions
« Reply #13 on: March 17, 2008, 04:50:33 pm »
tamara those are the 2 doctors that i originally saw as well. they suggested surgery as well but i really feel they suggested that because thats all that they did. i did get a second opinion and opted for gamma knife. good luck to you.

goinbatty

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Re: Decisions, Decisions
« Reply #14 on: April 08, 2008, 08:09:43 pm »
Hi Tamara,
I'm a nurse and this was my first experience with so many treatment options for a given condition.  I work with oncology patients for the most part.  Personally, and this is just me mind you, I could never trust the fact that a surgeon "got it all."  Also in my case, I have a history of grand mal seizures and the thought of anyone in there manipulating my brain in the least bit was more than I could agree to.  As far as post CK MRIs, I've had one.  I wasn't nervous at all going into it but the report shook me up a bit because it mentioned a dural tail which can be seen with meningiomas.  The radiation oncologist felt this was due to dural irriation from the CK.  Either way, I'm still glad I chose that option.  It's hard to explain but I look at it as I chose this option and whatever happens now, well it just happens.  After I painstakingly considered all options, I did what was best for me. 
Through all of your research and consults, you'll get to a point where it will all come together and you will know what is best for you. 
Take care,
Sandra
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

 


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