Author Topic: Saw MRI Written report yesterday, feeling edgy about posting private stuff  (Read 4891 times)

KeepSmiling

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Meeting with Otolaryngologist very soon to discuss written MRI results, which we picked up yesterday. Not feeling too well about this, the news is jarring.
Issues-
-Has lost hearing in left ear.

-Has been prescribed  a few weeks  Prednisone, since 11/27 presumably in hopes it could restore hearing.  Hearing, so far, appears not to be restored.
 
-MRI results indicate  impression: "Enhancing 15  mm lesion arising from 7th and 8th nerve complex with intracanalicular extension consistent with an acoustic neuroma".   There is intracanalicular extension of this lesion, which measures 15 mm in the greatest transverse dimension with the intracanicular portion. The mass measures 7 x 10 mm in the greatest craniocaudad and transverse dimensions respectively...   Deciphered this as best as possible using Google and Google scholar.

-Trying to help patient stay positive and am succeeding so far, however the mega doses of prednisone have caused restless sleep, intense hunger and a bit of congestion. - patient is very active athletically and  we joke about the boost that prednisone offers in atleticism.

Trying to stay logical, like Mr. Spock on Star Trek. It seems logical that our most pressing issue is to identify the best doc for  treatment. How to find doc? How? (deliberate repetition here, this is a  concern) Thanks for being here. We need you. Decided to join this group because we need support. Again, very grateful for this site!

12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

Sam-NewZealand

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Re: Saw MRI Written report yesterday, feeling edgy about posting private stuff
« Reply #1 on: December 13, 2012, 02:02:02 pm »
i read and feel your 'How' i think its the trickiest thing i found here in NZ.  I hope that someone can answer you with local 'know how' ... strength to you on this journey xx

As to the results - i've been there too & the best advice i can give is try not to over analyse them yourself if you have a specialist appointment lined up ... as they have trained and know what they are looking at and may conclude different to your thoughts.

 Kia Kaha ... which in NZ means 'stay strong' - there are many useful members of such a great wee support forum here :)

xx
S
MRI on 16 Nov 2012 diagnosed - 29 years old!
Left AN 2.7 x 2.6 x 2.4 cm - pressing on brainstem & sensory nerve for face, full/numb ear feeling, constant tinnitus & major hearing loss in Left ear
7 hr AN surgery 25 Jan 2013
2 hr CSF Leak surgery 16 Feb
SSD Left, dry eye & slight Facial Nerve Damamge

CHD63

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Re: Saw MRI Written report yesterday, feeling edgy about posting private stuff
« Reply #2 on: December 13, 2012, 03:01:28 pm »
Hi KeepSmiling .....  (love your user name! :))

Glad you posted.  I can identify greatly with your subject line .....  I, as well, was very edgy about posting private stuff online as I had never contributed in a chat room, forum, comments on news articles, etc. in my life before my AN diagnosis.

You will, however, find this forum to be filled with caring and supportive posters.  The moderators/administrators do a tremendous job with keeping this a secure, valid site.

Reading your diagnosis before seeing a physician can be scary.  Do not dispair.  If your hearing is already gone and the measurements in the 1.7cm range, you should have plenty of time to research your options for treatment or perhaps even watching and waiting.

If you have not already done so, send for the free informational materials from anausa.org (see:  http://anausa.org/index.php/contact-us/free-ana-information-packet )  These materials will answer many of your questions.  Take a deep breath and take it slow in jumping into the first opinion for treatment.  This is your body and your decision ..... no one else should make the decision for you.

Many thoughts and prayers.  Ask all of the questions you have right here and normally you will have many quick replies.

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: Saw MRI Written report yesterday, feeling edgy about posting private stuff
« Reply #3 on: December 13, 2012, 03:40:52 pm »
Hi, Keep Smiling ~

Sorry you have to deal with an acoustic neuroma but glad you discovered the ANA website discussion forums, decided to register and post.  Welcome and please know that we are a diverse group from around the country and with members from other lands all coming together under a common banner of people diagnosed with an acoustic neuroma.  Some of us, like you, are recently diagnosed, some are contemplating treatment (surgery or radiation - or both) and many are now post-op or radiation and in recovery mode.  A few of us have fully recovered and have encouraging stories to tell.  Our commonality is that we are collectively eager to supply information, answer what questions we can and offer unqualified support with the understanding that only another AN patient can possess.  As a group, we're honest and don't sugarcoat the realities of dealing with an acoustic neuroma but we aren't cynical or judgmental and we don't second-guess another AN patients decisions or emotions. 

Your hesitation about posting your medical information is understandable.  Many of our members have the same reservation, at first.  Please know that we have no rules here regarding information.  If you don't feel comfortable posting 'private stuff', that's O.K.  However, I'm confident that when you visit the site more often you'll realize that we are not prying or seeking information for the fun of it but sometimes need specific medical information in order to be able to offer accurate advice (with the caveat that we are not doctors and offer what we've learned from our experience as AN patients).  Again, post only what you feel comfortable with, when you feel comfortable doing so.  We'll respect your boundaries. 

I believe you'll find our members both knowledgeable and friendly.  We share a rather unique medical condition that we didn't ask for but that we all have to deal with, one way or another.  These discussion forums allow us to do that with other AN patients, sharing information and offering mutual support  Consider us as 'family'.   :)

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.

jaylogs

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Re: Saw MRI Written report yesterday, feeling edgy about posting private stuff
« Reply #4 on: December 15, 2012, 10:46:38 am »
Hi there and welcome to our wonderful family! So sorry you had to find it, but I think you'll find it a great source of information and support.  There's not a lot more I can say that Clarice and Jim haven't already said, but just know that this forum is a safe place to talk about anything you want.  We work hard to keep out the "riff-raff" that don't belong here, and try to keep things in a positive and support environment.  Keep us posted, vent if you have to, and ask any questions you may have.  Take care!
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

KeepSmiling

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Re: Saw MRI Written report yesterday, feeling edgy about posting private stuff
« Reply #5 on: December 18, 2012, 09:11:57 am »
Thanks for the wonderful replies. It is very good to have a group who will support us.  Yesterday my husband spoke to the doctor, his employer yesterday and his family. He seems to be doing well, maybe because he has read information and is knowledgeable.  Now we can be a bit more open about his acoustic neuroma. 

We received the packet of info in the mail and we found the online information about specialists. It was a wonderful help.  So glad you created this site- Thanks so much!
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

millie

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Re: Saw MRI Written report yesterday, feeling edgy about posting private stuff
« Reply #6 on: February 17, 2013, 08:43:59 pm »
I'll pray for you on your journey.  This site has been invaluable to me.  I had surgery four months ago and I am slowly getting better.  It's a process and you'll need time abd patience.
Find a doctor you can like and really trust.  Then it will be easier to decide between radiation or surgery, if either is needed, and thenit will be done and you will be on Recovery Road. Stay strong.

kmr1969

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Re: Saw MRI Written report yesterday, feeling edgy about posting private stuff
« Reply #7 on: February 19, 2013, 07:47:36 pm »
Smiling,

If you got the 'Willing To Talk' list as part of your packet, I would strongly encourage you and your husband to call several people with similar sized tumors.  I spoke to 5 or 6 people and they were a source of great optimism for me.  Just hearing from people who had been through the AN journey and made it to the other side of treatment was very encouraging.  They didn't sugar coat their experiences and they wouldn't tell me what to do (surgery vs. radiation), but they were awesome people and very helpful.

Good luck to you and your husband.  Sounds like you are off to a good start with your research.  And remember, you have time to gather your thoughts and make the decision that it is best for you.

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far