Author Topic: Help! Newly diagnosed  (Read 5559 times)

alknows

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Help! Newly diagnosed
« on: February 02, 2007, 05:59:37 pm »
I had a sudden hearing depreciation in my right ear not long ago, no warning, just woke up one morning and couldn't hear very well at all out of that ear. I already had tinnitus. I'm 54 and was told that just happens some time. Now I realize the tinnitus was the first sign of the tumor. I've had my MRI, and will see a neurotologist/neurosurgeon Tuesday. My tumor is 20 mm by 20 mm by 11 mm. Anyone have a feel for whether that's a large enough tumor to rule out radiology as an option? Any dietary precautions I should be taking now? Any information will help. Thanks in advance.

ppearl214

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Re: Help! Newly diagnosed
« Reply #1 on: February 02, 2007, 06:12:53 pm »
Hi al and welcome.  I'm sorry to know you had to seek us out, but... I'm so glad you are here to seek us out! :)

I know the usual cut off point for radio-surgery is usually around 3cm, so your's is smaller than that.  No true dietary requirements needed......

where are you located and we're all here to help you through this... truly.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

alknows

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Re: Help! Newly diagnosed
« Reply #2 on: February 02, 2007, 06:16:55 pm »
Thanks for the welcome! For such a rare tumor, it's good to know this many people keep in touch and swap war stories! And I'm in Ontario, California, not Canada!

Shrnwldr

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Re: Help! Newly diagnosed
« Reply #3 on: February 02, 2007, 06:43:24 pm »
Whose your doctors? And oh Welcome to the party :)  This is a fantastic site and many many wonderful people. 
2cm x1cm, right side
Surgery: Trans-lab approach
Dr. Jerald V. Robinson, Dr. William Hitselberger, Dr. Michael Stefan.
Hopsital: St Vincent's Hospital, Los Angeles, CA
Date of Surgery: May 18, 2007

ppearl214

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Re: Help! Newly diagnosed
« Reply #4 on: February 02, 2007, 06:59:46 pm »
Hi al

Ah, know THAT Ontario well... friends of mine owned the lovely winery on the runways at the airport (what is the name of the wee town there on the backside of the Ont Airport that only has less than 10 blldg?  Been to a wedding on the winery... GORGEOUS place!)

And yes... we are here.....and we are here for you :)

Phyl
« Last Edit: February 02, 2007, 07:07:11 pm by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Obita

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Re: Help! Newly diagnosed
« Reply #5 on: February 02, 2007, 08:23:04 pm »
Hi alknows and welcome !!

Sorry you need to be here but glad you came on. 

Unless your AN is in a bad spot, you are probably a radiation candidate. 

Good luck Tues. and come back and tell us what you find out.  Also, if you need anything, give a shout.

Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Boppie

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Re: Help! Newly diagnosed
« Reply #6 on: February 02, 2007, 10:55:26 pm »
Radiation would probably not be ruled out based on the size of your tumor.  It is not large.  No dietary items are known to change AN's one way or the other.  Stay relaxed and keep on your normal routine.  Please keep us updated.  This is a friendly place.  No question is too small to get an answer.

Sue

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Re: Help! Newly diagnosed
« Reply #7 on: February 03, 2007, 01:40:05 am »
Hi

The only thing I would add, is in regards to diet:  Tinnitus can be aggravated for some by the use of caffeine, asprin and more loud noise. But you might already know that.  It might also be aggravated by high blood pressure so it may benefit you by limiting your salt intake.  And for diabetics, high glucose levels can make tinnitus worse.   So, if any of that is beneficial to you...there you go!   

My AN is much bigger than yours and I had radiosurgery.  I do wish you the best of luck with whatever treatment you decide on. You might be advised to "watch and wait", too.  I hope everything goes smoothly for you and this is all behind you soon.

Sue in Vancouver
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

Lorenzo

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Re: Help! Newly diagnosed
« Reply #8 on: February 03, 2007, 03:54:42 am »
Hi

Remember to look into various options, CK, GK, surgery and watch and wait. Whatever options are available for you (sounds to me like they all are) then you can make a decision based on your choice and one that you are comfortable with! I had CK and mine was 26mm at time of treatment, so well above your size. Still, size is not. Location is very important too. Seek out specialists i each area and talk to them. Form your opinion and then make aninformed decision. Watch and wait might be a good option initially until you have enough information.

Glad you found this family, we're all here to help each other!

Ciao, Lorenzo

Patti UT

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Re: Help! Newly diagnosed
« Reply #9 on: February 05, 2007, 09:13:27 am »
HI There,
 LWelcome aboard. Sorry you have discovered the AN. Like everyone has said. This is a great group of people. You will find a wealth of information and support here.  Gather as much info as you can so you can make the best decision for your treatment. Ask lots of questions on this forum. Theres usually someone who can answer it.
Take Care. Best of Luck on your AN journy.

Patti UT
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

alknows

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Re: Help! Newly diagnosed
« Reply #10 on: February 05, 2007, 11:07:47 am »
PPearl

The lovely little town is, or was, Guasti!

ppearl214

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Re: Help! Newly diagnosed
« Reply #11 on: February 05, 2007, 12:39:58 pm »
That's it! :) Thank you!  You know of what I speak... and it is/was gorgeous, so quaint and a lovely winery there... I'm afraid to ask if it no longer exists...  Google it.   J. Filippi Winery
 was the one!

Phyl

PPearl

The lovely little town is, or was, Guasti!
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

alknows

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Re: Help! Newly diagnosed
« Reply #12 on: February 07, 2007, 02:02:53 pm »
Actually, I'm off the hook. The tumor, which walked like a (AN) duck, and quacked like a (AN) duck, turned out to be a goose! Actually a meningioma (sp?) that affects feeling, not movement in the face and, in brain geography, was miles from the hearing nerve. Next up is a hearing aid looks like. Surgery would leave me feeling exactly like I feel now, but without a tumor. The course of action is annual MRIs and I have to look for symptoms developing, but no surgery. I'm grateful for that. Good luck to everyone in their battles with AN!

ppearl214

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Re: Help! Newly diagnosed
« Reply #13 on: February 07, 2007, 02:04:28 pm »
Glad to hear you found your answer, alknows.  Even though meningiomas are nothing to sneeze at, my hope is that your docs and the MRI's will be kind to you.

Best wishes to you.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"