Author Topic: Has anyone had treatment (surgery or radiation) prior to having ANY symptoms?  (Read 4074 times)

ColoradoGal

  • New Member
  • *
  • Posts: 15
  • Can I make you a margarita?
How did it go?  The more I learn from these discussions, the less I want to seek treatment. But doing nothing doesn't seem wise either.
« Last Edit: August 09, 2008, 01:49:37 pm by ColoradoGal »
2.5cm x 2.8cm debulked Aug 2008 at Barrows
retrosig, Spetzler & Weisskopf
post-op SSD, but all the facial stuff is working!

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
ColoradoGal:

Hi and welcome.

It's great that you haven't experienced any symptoms but procrastinating on seeking treatment is very unwise.  If an MRI 'with contrast' has definitely diagnosed an Acoustic Neuroma then it will very likely grow and, in time, cause you myriad symptoms.  It may not, but that would be a risk I wouldn't want to take.

If the AN is small enough (you didn't give a size) then observation ('Watch-and-Wait') is logical.  That will require semi-annual MRI scans to be sure the AN has not begun to grow. Of course, you hope it will not and if it remains dormant, you can probably avoid addressing it, either surgically or with radiation.  However, it will still remain in place and likely start to grow at some point, even if it is years from now.  That is the reality.  Any doctor with AN experience will likely tell you the same thing.

A bit more information from you would be helpful but we're not doctors and cannot offer medical advice, simply our opinions based on our experience.  I hope that will be sufficient, for now.:)

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.

Mickey

  • Hero Member
  • *****
  • Posts: 753
According to my DR. approx10-20  percent of AN`s will reach a full growth and stop. A low percentage but none the less a chance. I`m waiting and watching mine which so far has been stable and small. If it makes a move I`ll act on it. If not with minimal symptoms let it be! Mickey

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
The only thing that would be a concern is that it's on the high side of medium at 2.5 cm, and it's pressing into your brainstem.  ON the other hand, no symptoms is a good thing.  However, as Jim pointed out, symptoms can come on suddenly and can be pretty unpleasant. 

It makes sense to seek out several different medical opinions, but surgical and radiological.  You certainly don't have to rush into anything, but arming yourself with knowledge and medical options is a good idea.

Keep us posted.

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

hruss

  • Full Member
  • ***
  • Posts: 203
  • young and cheerful!
    • I made this group to help others!! (the group is in Bulgarian and in English)
coloradogal,

it is true what others pointed - your symptoms can occur suddenly.
I personally had had a huuuge AN for years and no symptoms. The last two months before my first surgery only vertigo appeared. I even didn't have all the symptomps typical of the AN that's why my doctors were very perplexed to diagnose me right.
2.5cm AN is a significant lump and it must be treated before getting more complicated!

Hope you are glad you found this place and i am sure you will be even happier later! (as I am now!)

Best wishes,
Hrissy
4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

marymomof3

  • Jr. Member
  • **
  • Posts: 70
Hi - Sorry if I missed it, but if you had no symptoms, how did the doctors know to look?  I really had no symptoms and then whamo!  I woke up 1 day with a full feeling in my ear which followed up with a ringing.  When I was diagnosed, the tumor was 1.8cm.  The doctors say that I probably had it for years... but had no symptoms, so I never knew.
Diagnosed Jan 21, 2008 w/1.8CM AN on left side.  Had is removed on March 19th at NYU.  And I am super grateful for such wonderful doctors!!

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Marymomof3:

Many AN's are found 'accidentally' because a doctor orders an MRI for other purposes.  These forums are rife with examples. 

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.

sabuck

  • Jr. Member
  • **
  • Posts: 77
    • Buck & Sons Landscape Service, Inc.
Hi Colorado Gal,

I had been experiencing some sloooow hearing loss over about a 2 year period. My family doc finally told me to get my hearing tested. This was my only symptom. I have had tinnitus my entire life so nothing had changed there. After my hearing test, the ENT doc said that due to my asymetrical hearing loss that he wanted me to get an MRI. I get a call over the weekend from the ENT doc telling me that I had a 2.5 cm AN (cerebellopontine angle tumor) nestled up next to the ole brain stem. I too would have gone on until my hearing completely gave out or I fell over from a vertigo episode or who knows what. Best of luck in your decision and outcome.  :)
Approx. AN 2.5 cm prior to surgery on 10/7/07)
(Cerebellopontine Angle Tumor)
The Ohio State University Medical Clinic (Drs. Brad Welling & John McGregor)
SSD post op - left side
BAHA surgery 4/25/08 Dr. Brad Welling 7/3/08 for Baha use!

marymomof3

  • Jr. Member
  • **
  • Posts: 70
Well - you're lucky that they found the AN before you experience symptons.  I remember laughing every time a doctor said I was lucky that I got an AN and not another type of tumor.... but having gone through surgery, I do realize that I am lucky for many things.  I was lucky that I was diagnosed (and correctly), I was lucky that I had a choice of treatment and lucky that there are so many great surgeons/doctors to work with.  And really truly....  lucky to had stumbled onto this forum, where everyone offered me a tremendous amount of support!

Well, now I've totally rambled on......
Diagnosed Jan 21, 2008 w/1.8CM AN on left side.  Had is removed on March 19th at NYU.  And I am super grateful for such wonderful doctors!!

Kathleen5306

  • Jr. Member
  • **
  • Posts: 67
Coloradogal

I am also a Colorado gal and like you had an MRI following up on a previous brain surgery for a totally unrelated tumor.  That follow up showed I had a AN and we followed it then.  When the tumor reached about the medium size, I elected to have it treated with CyberKnife.  For four years the tumor did not grow and things were good.  Then in the last 6 months, I started experiencing worsening symptoms and went for another MRI.  Then I found out it had grown by 50% after CyberKnife.  I am scheduled to have translab surgery in a week.  I will be one of the few that can tell you from personal experience what radiation and what surgery are like.  Feel free to call, email or contact me personally.  We may be neighbors!

Kathleen
Right side AN 19 x 9 x 8 treated CK 2002
Stanford Dr. Chang and Dr. Gibbs
Total hearing loss and tinnitus
Tumor has grown since CK treatment
Measures 20 x 13 x 14 June 2008
Translab Surgery HEI 7/30/2008
Dr. Friedman and Dr. Schwartz

Tumbleweed

  • Hero Member
  • *****
  • Posts: 1052
ColoradoGal:

Let me begin by giving the obligatory disclaimer: if, when, and how to treat your AN is a totally personal choice. Your decision will be the right decision.

With that out of the way, here's what I've learned. First of all, mild or severe symptoms can appear suddenly. I woke up from a nap with pronounced hearing loss, severe vertigo, nausea, vomiting and more. My balance never completely recovered (although it improved dramatically over the course of several months) and my hearing got progressively worse on my AN side while my tumor remained undiagnosed for 7 years. You're lucky you have been diagnosed before symptoms have presented themselves. Research your options thoroughly and now, so that if you decide to take quick action at some point in the future, all your decisions and plans will already be in place. You don't want to have to do a bunch of research if and when you become very ill.

When should you seek treatment? In a telephone conversation with Dr. Derald E. Brackmann (famous neurosurgeon at House Ear Clinic in L.A.), Dr. Brackmann told me that he's seen some ANs stay the same size for 20 years. After my first follow-up MRI revealed my tumor was growing -- and faster than the average AN -- Dr. Brackmann said I "should probably seek treatment." Note that at this point my tumor was 2.1 cm along the oblique transverse axis and just beginning to press against my brain stem. Dr. Brackmann added, however, that in Sweden it is routinely advised to all patients that they wait until they are deaf on the AN side before seeking treatment, at which time surgery is performed.

Sounds radical, huh? But the reasoning is that both surgery and radiosurgery often have negative, lifelong consequences (which are too numerous to list here but are detailed in many other posts on this forum). Dr. Brackmann told me that, in rare cases, someone can suddenly go completely deaf on the affected side (this usually happens more gradually, although it can happen in big, progressive steps downward in hearing function, so I don't wish to understate the risk). In this case, quick treatment with steroids will bring back hearing in 50% of the cases, according to Dr. Brackmann. Note that although Dr. Brackmann was aware of Swedish doctors' emphasis on watch-and-wait, he thought I should probably seek treatment, which in my case he advised should be GammaKnife (GK) or CyberKnife (CK) treatment to help preserve my hearing, which although damaged is still remarkably good on my AN side for a tumor my size.

Now for the flip side: the doctor I chose to treat me, Dr. Steven D. Chang (Stanford University Medical Center), when he looked at my followup MRI and discovered my tumor was growing, pointed out that the fact the tumor was now pressing against my brain stem was significant (in a bad way). While not recommending I seek treatment immediately or at any point, for that matter -- out of respect for a patient's right and need to make decisions for themself -- when pressed he said the longer I wait the greater the chance was that my current symptoms would increase and that new symptoms (such as facial numbness and other symptoms related to facial-nerve damage) would appear. Based on his assessment, I decided to schedule treatment immediately.

There are other, more pressing reasons to consider getting treatment sooner rather than later, however. First of all, the larger the tumor gets, the harder it will be to treat without repurcussions. For example, if you decide to get radiosurgery, any structures that the tumor is pressing into or wrapped around become more likely to receive collateral damage. That is, your brainstem, for example, gets increasingly in the way of applied radiation as the tumor pushes into it more and more, so it takes a radiation hit. Also, most institutions won't treat a tumor that is over 3 cm in size with GK or CK. So if you wait too long and your tumor grows to over 3 cm, you eliminate two very important options for treatment and are left with either resection (surgery) or standard fractionated stereotactic radiosurgery (FSR) at a place such as Staten Island Hospital (they will treat tumors greater than 3 cm in size).

So, to recap, you shouldn't panic and seek treatment before you've had a chance to research and consider your options carefully. But thinking you can wait forever to get treated may be a dangerous attitude, too. It might be good to know whether the tumor is still growing, as determined by a followup MRI, before seeking treatment for an asymptomatic tumor. But then again, it might grow quite a bit larger in the interim period and eliminate some treatment options for you. It would be unusual for your tumor to grow to over 3 cm in size in the six-month period between initial and followup MRI, as the average growth rate is only 1 or 2 mm per year. But there are many stories on this forum of accelerated growth rates. I'm one of them. My tumor grew 2 to 3 mm along each of the 3 axes of measurement in just 5.5 months. One other poster reported their tumor fully doubling in size in a 6-month period.

It's a tough decision, ColoradoGal. But you're not alone. This board has tons of useful information and also offers emotional support for fellow ANers. Welcome and best wishes.

Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

windy

  • Full Member
  • ***
  • Posts: 165
You have provided some well written information Tumbleweed!  It has helped me, as well.  Thank you for your time and to all others who give of their time to help people with acoustic neuromas.  It is an excellent community of people with a similar problem who provide invaluable information and emotional support.
* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014

shygirl

  • New Member
  • *
  • Posts: 43
Hi Coloradogal-

I also had no symptoms. I had an mri for mild seizures. EEG showed epileptic activity so off to the mri place.

My tumor was pressing into the brainstem so I couldn't have radiation.

I had perfect hearing in both ears, no facial nerve problems, no vertigo--just depth perception problems--and my balance was fine.

I chose translab because I wanted the best chance for preserving the facial nerve as the ENT and neuro-surgeon couldn't guarantee that for middle fossa.

Take your time and explore all options. Ask as many questions as you need to. Remember, there are no dumb questions when it comes to your health.
2.1 cm AN
dx 7/07
translab 8/07
BAHA 2/08--processor 3/08
chronic headache sufferer

AMD

  • Full Member
  • ***
  • Posts: 112
  • I'm sorry, could you repeat that?
Hi there,

Other than gradual hearing loss over the years, i really haven't had many symptoms at all.  The more I think back, the more tiny things I remember and wonder about their relation to AN.  My age and the fact that my AN is nestled right up next to my brainstem is what dictated my treatment options.  For me, the more years that pass, the harder it would be to treat and the more iminent danger I would be in. But, that is jusy MY scenario.

As Tumbleweed stated, everyone's different, so please take a moment and research all your otptions until you are satisfied with whatever decision you make in regards to your AN.  There are great AN docs all over and wonderful support system here. 

Wishing you and everyone else here the very best,

Amy D. :)
Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

 


anything