Author Topic: Newly Diagnosed  (Read 2465 times)

AZ JB

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Newly Diagnosed
« on: November 28, 2011, 02:07:41 pm »
Hello,  My husband was diagnosed with AN on 11-22-11.  Other than 50% hearing loss in his right ear (the AN ear), his other symptoms are mild (occasional ringing in his ear & difficulty with pressure when he flies).  He also has 33% hearing loss in his other ear.  His MRI results were sent to Barrows in Phoenix & we were told to make an appointment there with Dr. Syms (which we've done).  We don't know the size or exact location of the tumor, but after reading posts on this site & talking to the head of the ANA in Phoenix, we're requesting a copy of both the report & films for ourselves today.  We spoke with Mike, the head of ANA in Phoenix, & he had some very good information for us & was very encouraging, but in reading these posts, I realize we have a lot of learning to do.  Can anyone help us or direct us to a location where we can find questions to ask the doctors?  My initial reaction was panic & despair & I wanted that tumor out of his head, but I see that there might be other viable options for him.  His appointment with Dr. Syms is on Dec. 9th, & we have an appointment at Mayo with Dr. Barrs on Jan. 12th.  Is anyone out there familiar with Dr. Syms and Dr. Barrs?  After finding this wonderful site, I'm thinking we should also make appointments with Dr. Chang at Stanford & get an opinion from the Ear House in CA.  Any thoughts, suggestions, or help you can give us would be greatly appreciated.  Also, my husband is 59 & hopes to retire in a few years, but we own our own business, where it would be very difficult for him to have to require a lot of "down time".  Everyone posts that he will ultimately have to make the decision that will be best for him, but how do you go about doing that?  Thank you in advance for any help you can give us.  Judy   

CHD63

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Re: Newly Diagnosed
« Reply #1 on: November 28, 2011, 03:23:17 pm »
Hi Judy and welcome to this forum .....

It sounds like you are well into doing your homework on options after being diagnosed with an AN.

Check:  http://www.anausa.org/index.php/overview/questions-for-treating-physicianÂhttp://www.houseearclinic.com/consultation/acousticneuroma )  It never hurts to get multiple opinions.

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

Jim Scott

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Re: Newly Diagnosed
« Reply #2 on: November 28, 2011, 05:07:31 pm »
Hi, Judy - and welcome ~

The intrepid Clarice has covered the issue of finding questions to ask the doctor(s) so I'll simply attempt to address your pertinent question regarding how one makes the all-important treatment decision.  Obviously, that's a very personal decision and because the decision will, inevitably, involve a variety of factors all directly related to your husband, others simply cannot offer much concrete advice. The fact that your husband's business cannot financially bear the results of his absence for a long period of time is problematic because that could be necessary and he has to realize that.  Although radiation treatment is non-invasive and doesn't require hospitalization it carries it's own inherent risks so it is not a panacea.  The fine doctors you'll be consulting will answer many of the questions you'll have but ultimately, your husband will have to make the final choice for treatment.  A doctor won't do that, he'll only make recommendations.  The reality is that, no matter what he chooses, there will be an unavoidable risk.  One attempts to minimize the risk, of course (I did) but it remains a fact that must be dealt with, as I'm sure your husband will better understand after the physician consults.

Of course, we'll try to inform, advise when asked and always support you and your husband, whatever treatment he chooses.  We don't judge or second guess anyone because we've all been where your husband is, today.  Newly diagnosed, a bit frightened and somewhat overwhelmed.  It will pass as you both gather more information and form a treatment plan and, as I've stated, we'll be here to support you.  Meanwhile, take a few deep breaths and try to remain as positive as possible.  I know from experience that it helps.  :)

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.

AZ JB

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Re: Newly Diagnosed
« Reply #3 on: November 28, 2011, 09:22:21 pm »
Hi Clarice & Jim,

Thank you so much for your quick responses.  I went to the site you recommended Clarice, & printed the questions -- they were exactly what we were looking for!  Bob also got the news that his AN is 1.4 cm by .09 cm (the second number could be wrong) so we were very encouraged by that (-:  Yes, we do plan to send the films & report to HEI -- we've read a lot of positive things about them on this site.  The problem Bob has with being unable to work isn't financial (well, in a way it is) -- it's more that his business is dealing with other people's finances & he doesn't think his clients would be very comfortable with his being out of the loop for any length of time.  Hopefully, that won't be an issue, but we'll cross that bridge if/when we get there....

Now that we know the size of the AN & have some questions to ask & know of at least 4 very reputable medical centers & doctors within easy driving distance, we feel better informed & equipped to handle this which helps us to be a little more positive.... (for the moment anyhow).  I also hope Bob will join you on the forum -- he's read some of the posts I've asked him to look at, but right now he's letting me be his "filter."

Thank you again for your quick replies -- I'm sure we'll be back on here with more questions as they come up.

Judy