Author Topic: my results and advice for those just diagnosed  (Read 4786 times)

geexploitation

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my results and advice for those just diagnosed
« on: September 04, 2012, 07:17:25 pm »
It has now been a while since I had my surgery, but I wanted to share the results with you all because I thought they might be helpful to those learning about ANs and other tumors and those facing surgery. This is all my opinion, of course (your mileage may vary), so it could be of limited use, but I hope some people get a little something out of it.

I was diagnosed with a 4.3 cm probable AN in January 2012. I say "probable" because we couldn't figure out exactly what it was -- my symptoms were extremely slight and it was only discovered accidentally. On the advice of doctors, I took my time with learning about such tumors, finding doctors, working things out with insurance, etc.

I had surgery (retrosigmoid) on July 9th. It turned out that my tumor was not acoustic -- it was a trigeminal schwannoma (even more rare than ANs). Through some good luck with tumor type, tumor placement, and some excellent medical care in Boston, I've done well. Starting about one week after surgery, I got a bit better each day. I'm now working on re-building my fitness but I'm not limited in any activities. Because of the location of the tumor, my main symptom at this point is numbness in my face and mouth, but my balance and hearing are excellent.

So, good results can happen. These are not (with very, very few exceptions) life-threatening tumors. If you've been diagnosed you should understand that! To help good results happen, though, allow me to offer some unsolicited advice:

1) Take your time in deciding what to do and where to get treatment (if doctors experienced with these tumors says treatment isn't urgent). Studies show that surgeon experience is a huge predictor of positive results, so take your time and find someone who's experienced and with whom you're comfortable.

2) Do enough research on ANs that you are comfortable asking doctors questions. It's OK to challenge them as to which surgical approach is best, or whether radiation might be appropriate, and what "acceptable" side effects are.

3) Temper your recognition of how amazing some surgeons are with the fact that they're human and therefore fallible. Get a second opinion and challenge the first doc if the second one disagrees. (I would be deaf right now if I'd listened to a particular eminent surgeon -- I'm glad I didn't just take his word that I most definitely had an acoustic tumor and ought to have translab!) Understanding these tumors to the best of your ability can help greatly with recognizing the limits of surgeons' knowledge about these tumors.

4) Get help. This site is a fantastic resource. If you have questions, ask. I have found the forums extremely helpful. No one is born knowing about these tumors and no one I've run across minds helping people newly diagnosed. This advice extends to health insurance, too. If that stuff is a mystery to you, get in touch with a case manager at your health insurance company -- they can help you navigate the system.

5) Finally, take care of yourself. In spite of the fact that there's little mortal danger in having an AN or other similar benign tumor, it's still a big deal. Do what you need to do to feel comfortable going into treatment (or just watching and waiting), whether it's talking to a therapist or pastor, praying, delving into medical research, etc. Coping strategies are necessary and beneficial.

Most of all, people new to all of this should know that there really is good reason to be hopeful. We should always be wary of those peddling hope, perhaps, but my results speak for themselves, and even if they aren't typical I have met so many well intentioned and helpful people this year that it kind of blows my mind. Have faith that you'll meet such people on your medical journey. There are many out there and on this site, just waiting to extend a helping hand.
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41 mm x 24 mm x 28 mm probable AN diagnosed 1/10/2012.
Surgically diagnosed 7/9/2012 as TRIGEMINAL schwannoma and removed via retrosigmoid at MGH in Boston, MA by Drs. Barker and McKenna.

Jackee

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Re: my results and advice for those just diagnosed
« Reply #1 on: September 05, 2012, 07:57:36 am »
So this brought me to tears, not fearful tears but hopeful tears. Thank you.

carolbee1

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Re: my results and advice for those just diagnosed
« Reply #2 on: September 05, 2012, 02:05:01 pm »
This was very helpful as I was just diagnosed and am stressing over making a decision on which treatment to follow.  I am now in the process of finding a surgeon and treatment center.  This website has been the most help so far!  Thank you for sharing your great outcome and experience.  I gives me great hope!  My neighbor and friend has been a lot of help also, since she went through the surgery over 30 years ago.

millie

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Re: my results and advice for those just diagnosed
« Reply #3 on: September 05, 2012, 05:31:56 pm »
Thank you so much for your words of wisdom.  Millie

JWW

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Re: my results and advice for those just diagnosed
« Reply #4 on: September 05, 2012, 07:00:40 pm »
Where is the "like" button?   :)

geexploitation

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Re: my results and advice for those just diagnosed
« Reply #5 on: September 06, 2012, 08:55:10 am »
Good to hear from folks and glad to be of some help.

Carolbee -- In the last 30 years we have made huge strides in treating these tumors. In many ways you are "lucky" to be going through treatment now!
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41 mm x 24 mm x 28 mm probable AN diagnosed 1/10/2012.
Surgically diagnosed 7/9/2012 as TRIGEMINAL schwannoma and removed via retrosigmoid at MGH in Boston, MA by Drs. Barker and McKenna.

skipg

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Re: my results and advice for those just diagnosed
« Reply #6 on: September 06, 2012, 12:58:22 pm »
Double up on the "Like" button. Thanks for taking the time to post that valuable information and advice.
Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

MDemisay

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Re: my results and advice for those just diagnosed
« Reply #7 on: September 24, 2012, 02:02:03 pm »
Dear geexploitation,

Glad that you shared that! The "like" button is now broken, since it has been hit so many times!

Sometimes, we need to step back, not panic, and take it rationally and thoughtfully (the diagnosis) that is what we have this forum for. For research, double checking something that doesn't "sit" right, and getting another opinion when necessary.

Very calm and rational. Very well written. Kudos to you.

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

It is what it is

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Re: my results and advice for those just diagnosed
« Reply #8 on: October 15, 2012, 08:09:25 am »
Thanks.  The wisdom shared on this list is incredibly helpful.

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

 


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