Author Topic: Need some guidance - QUICK!  (Read 3457 times)

bassman458

  • New Member
  • *
  • Posts: 3
Need some guidance - QUICK!
« on: November 16, 2015, 01:17:49 pm »
I am scheduled for Gamma Knife tomorrow morning. My AN is approx. 8mm x 4mm x 3mm [corrected values].

Met with neurosurgeon for first time today, he said if he had my AN, he would monitor with MRIs and do nothing right now. He is worried about 5% risk of total hearing loss and/or facial paralysis, because my AN is confined to the ear canal. BTW my hearing is better on the AN side than the other, but it is all age related (they think). I'm 59.

I had met with an ENT about a month ago who wanted to jump in and do microsurgery right away, and then backed off to "watch and wait" when he found out that my hobby/therapy is playing music in a group at church.

I was then urged by a friend to consult with a director of radiology oncology at Kettering. He said he would treat with GK and it would need to be done sooner or later, so may as well schedule and get it over with. So, we scheduled the procedure and that's what led up to today's meeting with the neurosurgeon.

So the neurosurgeon wants me to get a "thin slice" MRI so he can get a better picture of the AN. He said if we see it's growing, then go in for a GK procedure. He also said the risk is no higher if it gets bigger.

I was mentally prepared to go in for GK tomorrow. Now I feel I've backpedalled to square one again.

Any advise would be appreciated. Thanks.

« Last Edit: September 28, 2017, 01:58:52 pm by bassman458 »

CHD63

  • Administrator
  • Hero Member
  • *****
  • Posts: 3227
  • Life is good again!!
Re: Need some guidance - QUICK!
« Reply #1 on: November 16, 2015, 03:15:17 pm »
Hi stealth94art and welcome to this forum .....

Only you should make a decision as to whether to wait or go for treatment, after gathering medical opinions.  It sounds like you have received some difference in opinions and that makes it hard to decide.

With an AN as small as yours and apparently no significant symptoms, many patients have opted to wait for that second MRI to see if it is actually growing ..... many do not.  However, if you do have symptoms and/or they change, that sometimes indicates a need to proceed with treatment.

When were you first diagnosed?  What symptoms sent you for an MRI?  Or was it an incidental finding?

Best thoughts.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

jsanders1379

  • Full Member
  • ***
  • Posts: 135
Re: Need some guidance - QUICK!
« Reply #2 on: November 16, 2015, 03:22:23 pm »
Since both the radiation oncologist and the neurosurgeon are ultimately recommending GK, it seems like that is the correct path, esp. since your AN is so small. It depends on whether you want to act now or watch and wait. I'm in the "what are you waiting for?" club, as it seems there are more people that eventually get treatment than those who can go their entire life watching and waiting. The smaller the tumor when you get GK, the better the outcome, IMHO. Bigger tumor= bigger possible swelling down the road, as it hopefully dies.I watched & waited for 6mo. after diagnosis , and my tumor grew considerably. I'd go for the GK now. However, if you are not sure and want to W&W for a while, you should do that. We have all gone through these agonizing decisions- you are not alone...Good luck with your decision-making...
Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver

mcrue

  • Sr. Member
  • ****
  • Posts: 357
  • Greg Mech
    • gregmech26
Re: Need some guidance - QUICK!
« Reply #3 on: November 17, 2015, 06:25:15 am »
You should never be rushed into an immediate decision like this within 24-hours especially since acoustic neuromas are usually very slow growing and pose no immediate threat (with your small size AN).

The reasons most people "watch & wait" and forgo treatment are because there are a lot of things that can cause mild-to-permanent complications for your future life. For example, just look at all the sub-categories on this website (hearing loss, headaches, face paralysis, eye complications, balance problems, cognitive issues, tinnitus, fatigue, loss of energy, nausea, etc.)

You have to take time to research, weigh the pros and cons of each option, and then make your decision to either go with treatment or "watch and wait" with lifetime MRI's.

You're the one who is going to have to live the rest of your life with the outcome.

« Last Edit: November 17, 2015, 06:40:34 am by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

v357139

  • Sr. Member
  • ****
  • Posts: 473
Re: Need some guidance - QUICK!
« Reply #4 on: November 21, 2015, 11:40:43 pm »
Your AN is relatively small.  Many people with ANs your size opt for wait and watch.  Under this scenario you would monitor with period MRIs, like six months.  Some ANs do not grow and they remain in wait and watch.  If you are interested in this, check out the Wait and Watch section of this forum.  Different doctors have different philosophies.  You may wish to seek out another opinion.

On the other hand, if you really want to just get it done, there is absolutely nothing wrong with that at well.  As Clarice said, it is your choice.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

mcrue

  • Sr. Member
  • ****
  • Posts: 357
  • Greg Mech
    • gregmech26
Re: Need some guidance - QUICK!
« Reply #5 on: November 22, 2015, 01:06:18 am »
Oh, and I forgot to mention Death as a possible side effect. I believe it's around 1-out-of-every-500 people dies on the operating table.

PaulW, a senior member on this forum, shared some sobering news a few weeks ago when he wrote: "I had radiation when a close friend died at age 34 after surgery to remove a 2cm Acoustic Neuroma. When I discovered 6 Years later that I had an Acoustic Neuroma, the last thing I was going to do was have the surgery."

Educate yourself and don't let anyone cheerlead you into making a decision you may regret. There are no guarantees with whichever treatment you choose, and you're the one who has to live with the outcome.

Anyone who rushes you into a decision should raise some flags.

Best wishes. 
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

arizonajack

  • Hero Member
  • *****
  • Posts: 1139
  • Arizona - It's a Dry Heat
Re: Need some guidance - QUICK!
« Reply #6 on: November 22, 2015, 03:03:27 pm »
My AN is approx. 0.8mm x 0.4mm x 0.3mm


Are you sure you don't mean 0.8cm x 0.4cm x 0.4mm.

The fractions of a millimeter that you wrote are barely the size of a point that a Sharpie marker makes when you touch it to a piece of paper and I'm not sure that a point that small would even show up on an MRI since MRI slices are often one or two millimeters.

If your AN is actually measured in fractions of centimeters (a centimeter is about a half inch) then your AN is about the size that mine was when it took out 90% of my hearing on that side.

Six months after my first MRI, the second MRI showed a 20% growth and my hearing on that side was gone, never to return. So much for watch and wait.
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

ANGuy

  • Sr. Member
  • ****
  • Posts: 438
Re: Need some guidance - QUICK!
« Reply #7 on: November 22, 2015, 07:56:38 pm »
My AN is approx. 0.8mm x 0.4mm x 0.3mm




Six months after my first MRI, the second MRI showed a 20% growth and my hearing on that side was gone, never to return. So much for watch and wait.

And people who had serviceable hearing and had surgery or radiation in hopes of saving it, and the treatment caused their hearing to fail, so much for that too right?
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

  • Hero Member
  • *****
  • Posts: 1139
  • Arizona - It's a Dry Heat
Re: Need some guidance - QUICK!
« Reply #8 on: November 23, 2015, 12:22:57 am »
And people who had serviceable hearing and had surgery or radiation in hopes of saving it, and the treatment caused their hearing to fail, so much for that too right?

Right.

Like everything else in life one makes a choice and hopes it's the right choice. Sometimes it isn't. There's no question that WW works for some. Those who want to WW are free to make that choice.
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