Author Topic: At what point does something have to be decided?  (Read 24342 times)

Janey

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At what point does something have to be decided?
« on: April 07, 2015, 04:33:32 pm »
I was diagnosed in November of 2104, deciding to watch and wait.  I am scheduled for an MRI
on May 4.  My tumor was considered small in November, and I am sure hoping it is still small
in a few weeks.  Symptoms, however, have grown worse with marked hearing decline, very
bad tinnitus, wonky head (I'm very fond of that term - seems like everyone uses it and it's
great that everyone understands exactly what it means), some dizziness, and definite balance
issues.  Some days symptoms are barely noticeable, other days they are bordering on debilitating.
During these past six months I have read so many posts on this forum, and have gleaned a
wealth of information, and still I have not made up my mind as to what action to take if action
is indicated.  I am a 59 year old female, and other than the AN, fairly healthy.  What I want to do
is nothing!!!!  It seems that in so many cases the symptoms pre-treatment are still present after treatment.  As many of you, I have experienced much anxiety over trying to plan the "what-if"
strategy.  This is what I'm thinking:  I want to let the AN alone and hope that even if it shows
growth, it will stabilize at some point, before becoming life-threatening or causing more trouble.
I realize that SSD is probably a given, and so are the dizziness/balance issues.  I do not have facial
nerve problems, and that might be the signal for me to stop "watch and wait", but if the other
problems do not get any worse, I would rather not take action.  I have prayed a lot about this, and
I would appreciate any thoughts. 

ANGuy

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Re: At what point does something have to be decided?
« Reply #1 on: April 07, 2015, 05:22:12 pm »
Any dizzy and balance issues should ultimately go away since surgery involves cutting the balance nerve.  As your tumor effects the balance nerve, the signal from that nerve gets weaker.  For example, my balance nerve was at 50% a few months ago when I had it checked.  If I get surgery, it will be 0% when I wake up.  It will eventually go down to 0% or close to it if I don't get surgery.  Either way, it will be at 0% some time in the future.  As the signal from the bad side gets weaker and weaker, your brain learns to compensate with info from the good side.  If the bad signal gets weaker a little at a time, you won't have much in the way of noticeable symptoms.  It's the sudden drops that make you sick and dizzy. 

Mine has been getting weaker gradually and not caused me much problems.  Maybe a half dozen times over the last ten years it has had sudden drops in performance that made me sick for a day or two.  I call these "attacks" and I just take valium and/or antivert along with zophran to get through them.  I've been told if I get surgery, my balance symptoms should be minor because my brain has done so much compensating already and my balance nerve is so weak already.

As for hearing, I agree with you.  Keeping your hearing is not something to look forward to.  If it still works, great!  If it doesn't, you won't be all broke up about it because it's not like it was going to work no matter what you do.

The way I look at it, age and tumor size are the big factors.  This is just my personal opinion mind you, but that is what I am using to guide my decision making.  How big is your tumor, and what does your treatment Dr think is the point where it's size becomes a risk factor?  How old will you be when your Dr thinks age will be an issue with surgery?

Mine is 1cm, so I have a lot of leeway in terms of growth before it gets "too big".  I am 48.  My Dr says that 58 is plenty young for surgery.  So, in my case, using my criteria, I have plenty of time to observe MRI's.  I told my Dr I wanted to go 10 years and he thought that was pretty much not going to happen.  He also told me he would not get surgery now if he were me.  So, somewhere between "not now" and less than 10 years is my mid term planning.

You are 59.  Does your Dr think that being 65 significantly changes your odds for a good recovery?  Do YOU want to be 65 and be recovering from surgery?  At 65, you might be more interested in radiation.  Radiation might be more sophisticated in 6 years than it is now.  When you are 65, if your tumor hasn't grown at all, you might want to just keep WW'ing.  At some point, with advanced age, if the tumor hasn't grown, the odds of it never growing go up, so you may NEVER need treatment.

Sorry, I don't have an easy answer, no one does.  All I can do is describe my thought process which, if you ask me, is brilliant!  For me, for now, I am just going one MRI to the next and hoping I can reach the point in my life where my kids are off to college and I don't have to work anymore.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

arizonajack

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Re: At what point does something have to be decided?
« Reply #2 on: April 07, 2015, 09:55:20 pm »
You can read my history by clicking on the link below.

At this point you really don't need to make any decisions, at least not until you compare your next MRI to your previous MRI.

In my case the AN grew 20% in the 6 month interval and I opted for radiation. I was already SSD by then but my balance issues have pretty much been resolved. The tinnitus is minimal and easily ignored. I didn't have the dizziness and "wonky" head that others report.

The trouble with ANs is that, even if they don't grow, they still do ongoing damage. Watch and wait only delays the inevitable.

The best time to kill it is when it's small, you're healthy, and you have good insurance. Those factors can change for the worse without notice.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Janey

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Re: At what point does something have to be decided?
« Reply #3 on: April 08, 2015, 01:02:08 am »
Thank you ANGuy and Arizona Jack for your responses.  My tumor was 4mm x 7mm in November.
I've only seen my treating physician once, and this was all new to me then.  The questions you asked me, ANGuy, are the exact ones I will be asking my Dr. when I see him in May.  Arizona Jack - although I want to watch and wait forever, I will keep in mind your comments about seeking
treatment while conditions are most optimal.  Again, I greatly appreciate the responses from you both.

arizonajack

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Re: At what point does something have to be decided?
« Reply #4 on: April 08, 2015, 09:25:49 am »
Mine was 3mm x 4mm x 9mm when I was diagnosed in April 2012. My hearing on that side was gone by then. My next MRI was in October 2012 and the AN had grown 20% in just 6 months. I had Gamma Knife in January 2013.

Any decision you make and when you make it is going to be based on a variety of factors yet to be determined. I hope you turn out to be one of the fortunate few who can Watch and Wait indefinitely with no ill effects.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Kristena

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Re: At what point does something have to be decided?
« Reply #5 on: April 08, 2015, 11:29:44 am »
And I don't know that the balance nerve is always severed? I don't have an acoustic neuoma, but my tumor occupies the same space, and that is about the only symptom that improved after surgery.
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!

PaulW

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Re: At what point does something have to be decided?
« Reply #6 on: April 08, 2015, 03:27:53 pm »
Hearing can be saved, both Gamma Knife and Cyberknife have good hearing preservation rates, especially if you are younger, your tumour is smaller and your initial hearing is good. Hearing can also be saved when tumours are small via microsurgery. You do have to weigh up the risks of both procedures versus W&W.
I chose to have Cyberknife proactively to save my hearing..
Nearly 5 years, and I still have what is considered normal hearing in my AN ear...I have lost some high frequencies, low frequencies are fine 


10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

rupert

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Re: At what point does something have to be decided?
« Reply #7 on: April 08, 2015, 04:17:40 pm »
And I don't know that the balance nerve is always severed? I don't have an acoustic neuoma, but my tumor occupies the same space, and that is about the only symptom that improved after surgery.

An acoustic neuroma starts it's growth from the balance nerve.  If they are looking at total removal or even partial removal they want to remove that connection so as to kill the tumor and have a better chance of no regrowth.  I believe removing that portion of the balance nerve would be a must.  Effects vary depending on how damaged the nerve is to start with.  Even if damaged there is still some signal going through the nerve and balance recovery would depend on how much. The more signal, the more balance issues until your body adjusts. The more damaged the nerve and less signal the faster the body adjusts.
« Last Edit: April 08, 2015, 04:19:35 pm by rupert »

Janey

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Re: At what point does something have to be decided?
« Reply #8 on: April 08, 2015, 10:13:26 pm »
Thank you all for your comments.  It sounds as if balance problems are likely to work themselves
out over time.   PaulW - I am almost SSD now, but I plan to address this with my Dr. at my follow-up
in May. Thankful radiation treatment worked so well for you!

bethtretrault

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Re: At what point does something have to be decided?
« Reply #9 on: April 09, 2015, 03:26:18 am »
Hi Jenny. I have been in W&W since Dec 2013. No change in size at 6 mnth MRI in May 2014. Coming up on my next MRI and keeping my fingers crossed. I am 57 and soon to be 58. I'd like to never have to do anything. I have been told by my MD that because I have had balance/vertigo issues pre that radio surgery is not a good idea. I guess because the tumor swells before dying? That may be a question for you to ask. I have developed some intermittent and minor eyelid twitching on the tumor side. I too still don't know what is best so I am choosing to do nothing. Good luck to you. You have the support of all on the forum. 
beth
12/2013 5mmx4mmx4mm left
tinnitus, w&w
5/2015 7mm-louder tinnitus, occasional dizziness
retro sigmoid 11/2015

Janey

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Re: At what point does something have to be decided?
« Reply #10 on: April 09, 2015, 09:15:01 pm »
Beth, it sounds like our circumstances are very similar.  I wish you the best of luck in May
at your follow-up MRI.  It's so comforting to communicate with people on this forum that
understand this decision making process, as well as everything else that goes along with
AN's! 

oak1971

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Re: At what point does something have to be decided?
« Reply #11 on: May 29, 2015, 10:38:24 pm »
I have SSD and am waiting for a surgery date. If you let it go far enough you will probably end up with SSD too. I wouldn't want that thing in my head any longer than I had to. I finally know what all my symptoms were being caused by and I want it gone now. Kind to creeps me out knowing it's there trying to take over.
Diagnosed left side AN 5/27/15

MG

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Re: At what point does something have to be decided?
« Reply #12 on: June 03, 2015, 05:40:03 am »
Hi Janey,

I have been on W&W since 2012. My balance is off some of the time but is not as bad as when I first discovered I had an AN. I have 85 % of hearing loss in my left ear and of course the dreaded ringing. My tumor as of yesterday is now 1.3 cm. It has increased in size by 4 mm. I was not happy with the results but it is still considered small. I am with you though, I don't want to do anything because I am 65 and my doc doesn't think surgery is for someone my age. I am still wondering about waiting too long and will my facial nerve be damaged if I wait too long. So many hard decisions to make. I wish you the best answers for your situation. Good luck!

Take care, MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

Cheryl R

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Re: At what point does something have to be decided?
« Reply #13 on: June 03, 2015, 06:49:59 am »
MG, there have been several older than 65 who have had surgery and did fine.     The biggest issue would be if you had other serious health issues that might be a factor.           Do you have a dr who does ANs on a very frequent basis?     Also the location of the tumor and if is pressing on the brain stem.         I would question the dr anyway.
                                                Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

MG

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Re: At what point does something have to be decided?
« Reply #14 on: June 03, 2015, 12:56:41 pm »
Cheryl R. Thank you for responding. Yes, I have a Dr. who does the AN surgery in Gainesville. I do have other health issues so therefore I hope to avoid brain surgery. I will be seeing him in the next few months so at that time I will see what he has to say .

Thanks again, MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016