Author Topic: Also Newly Diagnosed  (Read 6384 times)

chloes mema

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Also Newly Diagnosed
« on: December 18, 2011, 04:05:51 pm »
Hi All.  I was newly diagnosed in October 2011 with a 10.2 mm AN on the left side.  Saw my neurosurgeon for the first time last Friday and am scheduled for Vestibular Testing this week and then extensive hearing test the first week in January since my hearing has diminished considerably and I have several “strange” noises in my left ear 24/7.

As Dr. Bartels, my neurosurgeon in Tampa, said to me, he cannot make the decision for me, he can only inform me.  He did say that for me radiation would leave me totally deaf in the left ear, surgery MAY  give me 40% hearing but then I could also have facial paralysis; this scares me more than being deaf.  Anyway, at this point my choice is to wait and watch which is what I’ll discuss with Dr. Bartels in January. 

I have done days of research on the Internet but these forms and the ANA website have been the best.  The packet that ANA sent to me was very informative; however, when I read that this was not an ear thing but a brain thing it did upset me terribly.  I have tried to come to terms with my tumor since other than some hearing loss and some imbalance it has not caused me much problems but I’ll have to say it has not been easy.  When I read the other posts and learn what others have and have survived it gives me much hope.

I asked my husband, so when people say, “How are you?” do I say, “Fine, for a person with a brain tumor!”  (Try to find some humor in all this)     

So the bottom line to this post is - I just wanted to say thank you to all that have posted and answered on this forum.  Every post and answer that I’ve read has been very informative, given me hope and more understanding.

Karen
 
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

Jim Scott

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Re: Also Newly Diagnosed
« Reply #1 on: December 18, 2011, 04:21:51 pm »
Hi, Karen ~

We appreciate your generous words for the ANA website discussion forums.  I'm especially pleased to learn that reading the posts have given you hope as well as information.  We don't sugarcoat the realities of an acoustic neuroma diagnosis, surgery or radiation but we do try to offer a realistic, positive outlook.

I'm not in Florida but what what I've read, you're in good hands with Dr. Bartels.  I trust that you'll be able to watch-and-wait long enough to decide on a treatment, when it becomes necessary.   In the meantime, thanks again for your post and best of luck as you continue your AN 'journey'

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.

CHD63

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Re: Also Newly Diagnosed
« Reply #2 on: December 18, 2011, 04:58:57 pm »
Hi Karen .....

Just adding my welcome to this forum of caring, supportive new friends!

So glad you already have the ANA informational materials ..... they should answer many of your questions.  You might also want to print out the questions to ask your doctor the next time you have a consultation.  See:  http://www.anausa.org/index.php/overview/questions-for-treating-physician

Gather any other questions you may have for us on this forum.  That's why many of us continue on the forum ..... to help make this journey easier for others.

Sorry you have the noises (aka tinnitus) in your head 24/7.  For me, it has been one of the most disturbing aspects of the whole thing.  Unfortunately the treatment did not change mine, which actually did not begin until after my first surgery.

Many thoughts and prayers.

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

TJ

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Re: Also Newly Diagnosed
« Reply #3 on: December 18, 2011, 07:53:03 pm »
Karen

Welcome, are you sure your doctor said 100% loss of hearing with radiation?  You might want to check that before making your decision.  I have never heard that and in fact the numbers I have heard is about 93% of having serviceable hearing after radiation.  My AN was exactly the same size at yours.  I had CK done 13 months ago, I have lost a small amount of hearing, but I wear an hearing aid and hear just fine on my AN side.

The decision part for most is the hardest, you want to make sure what you decide is good for you.

Best of Luck

TJ

chloes mema

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Re: Also Newly Diagnosed
« Reply #4 on: December 19, 2011, 07:09:39 am »
Hi TJ, Jim, Clarice, & All. 
To answer your question TJ, I thought that is what he said.  Of course, between having hearing loss in both ears and being a nervous wreck that might not have been it.  My husband was at the consultation and he understood Dr. Bartels to say the same thing however that is a subject I'm going to investigate further with Dr. Bartels.  Dr. Bartels showed me on the MRI results where the AN has a small bump which he said is pressing into the acoustic nerve so maybe that's why he made that comment.

Right now my immediate concern is that I'm having Vestibular Testing tomorrow and was told I can NOT have caffeine 24 hours before the test.  I'm afraid that the caffeine withdrawal headache will be so bad that the test will be a waste of time.
 :(

Karen

 
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

leapyrtwins

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Re: Also Newly Diagnosed
« Reply #5 on: December 24, 2011, 10:42:14 pm »
Karen -

those on the Forum who have gone to Dr. Bartels have had nothing but good things to say about him.

And, he's right.  He can't make your treatment decision for you - it's a very personal choice and only you can decide what to do (after educating yourself and looking into all your options).

My neurotologist refused to tell me if I should have surgery or radiation (he does both).  He told me it was my decision to make and although that really frustrated me at first, in the end I came to see that he was absolutely right. 

Making your treatment decision is often one of the hardest parts of the AN Journey, but you'll "get there".  I found that when I made my decision I knew in my heart and in my "gut" that it was the right one for me.  I hope you have a similar experience.

Best,

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

chloes mema

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Re: Also Newly Diagnosed
« Reply #6 on: December 27, 2011, 02:24:44 pm »
Thank you, Jan.  I know it's the uncertainty of what's going to happen that I'm not dealing with very well. 

I have one more test and then another appointment with Dr. Bartels next week so hopefully I'll be of clearer mind and have more sound questions for him.

Right now my personal mantra has become, "is it life threatening, no, OK then let it go" when the thoughts start driving me crazy. 

All I can say, is thank God I found this forum and the great group of people.   I'm amazed everytime I read a story.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

leapyrtwins

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Re: Also Newly Diagnosed
« Reply #7 on: December 28, 2011, 06:25:46 pm »
I had two personal mantras.

"I'll be fine" - stolen from my neurotologist who liked to tell me "you'll be fine".

The other "Release all control" I got from my younger brother.  He knows what a control freak I can be and told me that going into surgery it was my job to just release all control and let the docs do what they were very capable of doing. He liken my surgery to being a passenger on a plane and putting myself into the hands of the pilot and trusting him to get me where I was going.  One of the last things I said to all those present in the OR before I drifted off to sleep was "I'm releasing control now".

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

mindyandy

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Re: Also Newly Diagnosed
« Reply #8 on: December 28, 2011, 06:46:53 pm »
Karen
AN=Annoying Nusiance. Love it. Im glad you found ANA. The people here are WONDERFUL. We all know what your going thru.
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

chloes mema

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Re: Also Newly Diagnosed
« Reply #9 on: December 29, 2011, 05:17:06 pm »
Jan - I'm also a control freak and often (especially now) I have to remember, "let go, let God"!  I'm afraid using your brother's example of it being like flying wouldn't work for me since I'm afraid to fly!  But I do like the "release all control", I'll have to remember that!

Mindyandy - glad you enjoyed my little bit of humor.  Have to keep on smilin'.  Yes, I feel very thankful that I found this site and the people have been wonderful.

 :-*

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

sharondaniels

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Re: Also Newly Diagnosed
« Reply #10 on: December 30, 2011, 08:41:02 am »
Hi Karen~
Not too sure about the %% for hearing loss and radiation.  I just had Gamma Knife on Dec.1st.  All has been well, just a bit louder noise in my ear.  Very positive that it is doing its thing and will go back for my 6mos check in June.  Good luck with your decision making!!
Sharon
 1.5cm AN right side diagnosed 10/12/11
 GK 12/1/11 at UVA
from VA

Lou

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Re: Also Newly Diagnosed
« Reply #11 on: February 07, 2012, 03:53:24 pm »
mmm,maybe being a control freak is our common ground...... I love to have a bit of a laugh with it. I call mine the tumor twins, Steve and Vincent. People look mortified when I say it, but hey, they belong to me so I'm allowed. I also love it when people say ' yes but it isn't a tumour' I give them a big smile and say I wish it were just a tumor but no its two tumors
Laugh and smile often
Lou
''The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be''

Bilateral facial nerve neuromas
8mm left side and 7mm right side. diagnosed late 2011.Watch and Wait Staus -  Currently at
the mercy of the English NHS system

chloes mema

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Re: Also Newly Diagnosed
« Reply #12 on: February 08, 2012, 08:37:18 am »
Lou - did you see my post under naming your tumor?  I haven't really named mine but if I do I'd call it TOM

T - tormentor
O - of
M - mine

 ;D

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

Lou

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Re: Also Newly Diagnosed
« Reply #13 on: February 09, 2012, 02:26:50 pm »
lol, love it, mine is not so original. I kept  getting eye twitches and always told my coworker that he was stressing me out and causing my eyes to twitch. So when I finally had an MRI and my two little annoyenses were found, I called them Steve and Vincent the McCorley twins, his name.. He about chocked laughing. I always told him he was doing my head in and that I now had proof. it was soo funny. It's so good to have someone to laugh with
''The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be''

Bilateral facial nerve neuromas
8mm left side and 7mm right side. diagnosed late 2011.Watch and Wait Staus -  Currently at
the mercy of the English NHS system

chloes mema

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Re: Also Newly Diagnosed
« Reply #14 on: February 09, 2012, 03:44:08 pm »
Lou need to keep some humor going or we'd all go nuts!   :D

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back