Author Topic: Another "Not sure what to do"  (Read 4021 times)

paul71

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Another "Not sure what to do"
« on: April 12, 2011, 03:08:43 pm »
Greetings!

Last year I was diagnosed with an AN which has grown as of my 2nd follow up today. It is about 2 cm though I forgot to bring my original scans so the doctor could do a comparison since I got the scans at another hospital closer to home.

I am seeing Dr Bigelow out of the University of Pennsylvania and have an appointment next week with his associate Dr Lee. They perform both GK and surgery. I will be 40 in May and the doctor recommended surgery, though he wasn't leaning or forcing either option. Since I had concerns we have a follow up next with with his associate to discuss things again and I. Greater detail as well as bringing both my first and second MRIs.

The AN is not pressing against the brain stem and I have no facial nerve issues though the tumor is growing though again not sure how much u til they can do the MRI comparison.

I wpuld like to do the GK only because I am nervous about the surgery. Though the GK is not a guarantee either and it could grow back. Or I could have a stroke.

I wpuld like to do e surgery because the tumor would be removed, but then all the after affects involved with the surgery.

It looks like I have come to a fork in the road in my life. It looks like no matter which path I choose there will be regrets and what-it's.  My wife and I have a 4 year old son too. Just throwing that in there.

So just wanted to share my story and hope to hear from anyone the decisions they made and why.

Thanks

Paul

Jim Scott

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Re: Another "Not sure what to do"
« Reply #1 on: April 12, 2011, 03:26:55 pm »
Hi, Paul - and welcome.

I'm never happy to learn of someone else being diagnosed with an acoustic neuroma but since you have, I'm glad you found the ANA website/forums. 

You outlined your situation quite succinctly and we can all empathize with your angst as you face making a treatment decision.  I certainly wouldn't presume to offer any specific advice because (a) I'm not a doctor and, (b) you seem to be on track - with plenty of information about each option (surgery/radiation) and you are aware that both carry inherent risks. 

One issue you raised that I'll comment on is that you assume that no matter what treatment option you chose, you'll have regrets, later.  That is not necessarily so.  Not every AN patient - surgery or radiation - encounters difficulties.  Some that do find any complications are temporary and some, like me (I had both surgery and radiation) have virtually no complications.   That could well be your experience but, as you well know, treatment outcomes can never be guaranteed.  I had no choice but (debulking) surgery (4.5 cm ) and it worked out fine.  I hope your treatment -surgery or radiation - will too.  We're empathetic and offer our encouragement, experience and support, no matter what option you ultimately chose.

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.

leapyrtwins

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Re: Another "Not sure what to do"
« Reply #2 on: April 12, 2011, 05:37:32 pm »
Best suggestions I have are 1) do your homework and educate yourself as much as you can; 2) make sure you are comfortable with the doctor(s) you choose for treatment; 3) make sure those doctors are VERY qualified in treating ANs; 4) weigh the pros and cons of each treatment option; and 5) do what you feel is best for YOU - follow your heart and your gut.

Good luck,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

TJ

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Re: Another "Not sure what to do"
« Reply #3 on: April 12, 2011, 07:09:07 pm »

Paul

Let me throw in my two cents.  Both, Jim and Jan gave you the best advice.  But you really do need to get all the information and sort it out in your own way.  You will also need to confront if you have insurance, what will they pay for.

Best of Luck

TJ

chrisransom

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Re: Another "Not sure what to do"
« Reply #4 on: April 12, 2011, 07:44:10 pm »
Paul - I'm glad that you found us but it's too bad it's for this reason.  I too just found out about my little hitchiker recently and you will quickly learn the lingo, options, ins-and-outs, and th many options available to you.  That was job #1 for me.  Educate yourself and then make the best decision for you.  It would sure be easier if it were clear-cut and someone could say "if you're experiencing x then do y" - but it's not.  There are lots and lots of people here to support you, council with, and help you feel better no matter what decision you make.

Bets of Luck and welcome,

Chris
Diagnosed with 21x16x16 mm AN in December 2010.  No change in June 2011 nor in January 2012.  No major symptoms - tinnitus, some fullness in left ear but no hearing loss or other symptoms.
Firmly in the W&W camp for now.

paul71

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Re: Another "Not sure what to do"
« Reply #5 on: April 12, 2011, 09:38:23 pm »
Thanks for the input so far.

I have another question - per my latest MRI report it says that the tumor is not attached or up against my brain stem and has not gone into my ear canal, but is pressing on it ( sorry do not have a copy of the report in front of me).

Does this mean much in regards to if I choose surgery? Since it is not 3 centimeters and not on my brain stem, do I have a less chance for complications and perhaps higher recovery rate?

Ok ow I need to ask the doctors this, must wanted to know if anyone has any experience.

Thanks again !

jaylogs

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Re: Another "Not sure what to do"
« Reply #6 on: April 12, 2011, 09:47:50 pm »
Hello Paul!! Welcome to our club!! As it was already said, I am sorry you had to find this place, but be glad you did, it's a great source of info!! Great advice has already been given, as Jan said educate yourself as much as possbile, get more than one opinion.  There's a place out in California called House Ear Institute (or clinic).  You can mail them a copy of your MRI disc and radiology report and they'll do a free consult over the phone with you (with an actual doctor).  You don't have to go there, but it's good to get another opinion.  I hope you find some more good information. Let us know how it goes, ok? Take care and good luck!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

kenneth_k

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Re: Another "Not sure what to do"
« Reply #7 on: April 12, 2011, 10:07:24 pm »
In Denmark, policy is to try to treat/remove growing tumors before they get app. 2cm (compressing the brain stem). The risks are smaller then. If the tumor gets involved with the brain stem, radiation is normally ruled out.

Good luck with your decision making and consultations.

Kenneth

 


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