Author Topic: Not sure what procedure to go with  (Read 3270 times)

Lon Metzger

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Not sure what procedure to go with
« on: January 29, 2013, 06:05:28 pm »
I was diagnosed with a 2CM Acoustical Neuroma in Dayton Ohio in early November. I first went to the Kettering Medical Center for Gamma Knife consultation. The following week I went to Columbus to Ohio State hearing center for consultation with Doctor Welling and I left there confident that surgery was my best option. After some research I decided that I would like another opinion so I choice Dr. Tew @ the Mayfield Clinic in Cincinnati. When I left there I was more confused than before,not saying that they are not a good clinic. Dr. Tew did run my tumor by the board and they recommended a 10 day Radiation treatment. I had expressed hoping to keep what little hearing in that ear that I have. However the Tinnitus is driving me about nuts  and no doctor to this point has stated for sure with surgery that this would go away. I am 54 and very active[play full court baskball every week] and really don't want a dramatic life changing event. Also last year I was diagnosed with a low blood platlet count and they don't know why and this concerns me about surgery,even though the doctors assure me that this is not a problem.
 Any person who would like to give me your opinion on surgery,gamma or radiation would be greatly appreciated.
Very Confused!!!

Jim Scott

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Re: Not sure what procedure to go with
« Reply #1 on: January 30, 2013, 12:50:36 pm »
Hi, Lon ~

As you know, our members are not physicians and cannot offer medical advice but as AN patients, we can give you our opinions based on our experience and that of others who communicate on these forums. 

Ultimately, the decision of surgery or radiation rests with the patient.  As you know, AN surgery is invasive and does carry some risks, as all surgery does.  Radiation treatment is far less traumatic but not without it's own set of risks, which are sometimes delayed but must be considered, all the same.  While often attractive because it is performed on an outpatient basis and the patient can usually resume normal activities immediately, radiation is not a panacea.  If it were, every AN patient that qualified for radiation treatment would chose it.  They do not.  Radiation requires an annual MRI for years into the future, to detect any re-growth.  However, your desire to not have your AN treatment become a life-changing event (which is perfectly understandable) would point to choosing radiation (GK, CK or FSR) as your treatment. 

Tinnitus can be a big issue but neither surgery or radiation will affect it to any great degree because it is generated by the brain, not the ear, and neither procedure addresses tinnitus because there is no 'cure', although homeopathic 'remedies' abound. A few even work for some AN patients.   

For what its worth: I was diagnosed with a 4.5 cm AN in 2006 that was pressing hard on my brain stem, a life-threatening situation although my symptoms were relatively mild.  My neurosurgeon chose to 'de-bulk' my large tumor, effectively peeling off layers and making it thin enough to fold over on itself and be amenable to the effects of the radiation I received 3 months later (FSR). During the operation he also severed the ANs blood supply.  I was blessed to come through the surgery with no complications except for approximately 72 hours of slight double vision and the usual fatigue such a traumatic invasion of the body generates as it tries to heal.  All my pre-surgery symptoms disappeared almost immediately following the de-bulking operation.  The follow-up radiation was performed three months later on an out-patient basis.  I received 26 treatments of targeted radiation (a total of 27 Gy) to destroy the remaining tumor's ability to re-grow.  These sessions were completely uneventful and I did not suffer any side effects.  Subsequent MRI scans indicated tumor necrosis and the beginnings of shrinkage.  I've not experienced any of my pre-surgery symptoms since the original operation in '06.  Unfortunately, my hearing in the affected ear had been lost prior to my AN diagnosis but other that that, I'm in great shape, physically and have long since resumed my normal lifestyle.  I should add that I was 63 years old and in good physical shape at the time of my surgery, which I assume was a factor in my excellent outcome.  I'm not sure if my experience will be helpful to you but I hope it serves as an encouragement and, perhaps, offers you another option (de-bulking, radiation) to present to your doctors. 

Please try to remain connected to the ANA discussion forums and, if possible, update us on your decision.  Thanks.

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.

robinb

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Re: Not sure what procedure to go with
« Reply #2 on: January 30, 2013, 01:13:11 pm »
Hi Lon-

I had a small AN, mild tinnitus, no vertigo or balance issues.

After much research, I decided on GK at UPMC, which I had last week. I live in CA and would have traveled anywhere. See my post for the experience; doing great, no tinnitus, back to work and gym this week.

I personally ruled out surgery very quickly as it was too invasive with greater risks for complications. Then narrowed down to CK or GK, in only the best centers is US w/most experienced docs w/treating AN. Most of the leading docs/centers will review your MRI and provide an opinion at no charge. Remember each doc will generally advocate for what they specialize in, adding to your confusion. So ultimately its your decision to make. Once you make it, just go with it.

If you haven't already, get the WTT list from ANA and call as many people that seem relevant to your situation. Read through the posts on this site and PM anyone you wish to communicate with privately.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

arizonajack

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Re: Not sure what procedure to go with
« Reply #3 on: January 30, 2013, 09:37:35 pm »

 I had expressed hoping to keep what little hearing in that ear that I have.

A lot depends on just how little hearing you have left and how long it takes before you get the appropriate treatment.

Here's what happened to me.

By the time an MRI in April 2012 revealed the tumor it was 9mm and my hearing on that side was down to a distant squeaky mouse voice. My audiologist said that there couldn't be enough amplification on that side to make a difference.

My next MRI was October 2012. The tumor was 11mm and hearing was totally gone on that side.

Not trying to alarm you but my own experience is that the hearing deteriorates the longer the tumor is alive.

Skipg had a similar experience. See Reply #12 at:

http://www.anausa.org/smf/index.php?topic=18262.msg979750810#msg979750810

There is evidence that radiation might preserve hearing. Read the following article:

http://emedicine.medscape.com/article/857604-overview

Do your research, consult with experts, and make your decision. Recognize that these tumors are bad things and they don't get better by waiting.
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