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Author Topic: I ALSO HAVE A FEW NEW SYMPTOMS  (Read 6044 times)

agnes

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I ALSO HAVE A FEW NEW SYMPTOMS
« on: May 25, 2009, 04:07:08 pm »
I HAVEN'T POSTED FOR A WHILE BECAUSE I REALLY HAVE HAD NOTHING TO REPORT, ALTHOUGH I HAVE BEEN READING ON THE FORUM.
IT HAS BEEN SINCE 2007 WHEN I WAS FIRST DIAGNOSED, AND AFTER 3 MRI'S THE AN THANKFULLY HAS NOT GROWN. HOWEVER, I HAVE
NOTICED SOME COGNITIVE CHANGES AS WELL AS DEPRESSION STAGES I AM GOING THROUGH. I GOT OUT MY AN ASSOC NOTES FROM THE SEPTEMBER
2008 ISSUE THAT I GET IN THE MAIL, AND THERE IS A MEDICAL REPORT REGARDING COGNITIVE CHANGES AND DEPRESSION WITH AN'S. I NAP WHEN I
GET HOME FROM WORK DURING THE WEEK AND I SLEPT ALMOST THIS ENTIRE MEMORIAL DAY WEEKEND, WHICH IS A RARE THING FOR ME. ALSO I HAVE
NOTICED THAT I AM NOT CAREFUL WHEN DOING THINGS. I WAS THINNING OUT MY HAIR AND GRAPPED THE SCISSORS INSTEAD AND CUT A CHUNK OUT
OF THE BACK OF MY HAIR BY MISTAKE, I LEFT THE OVEN ON BY MISTAKE, I SLAMMED MY FINGER IN THE WINDOW WHEN CLOSING IT BY MISTAKE......
I NEVER DO THESE THINGS AND I AM WONDERING IF ALL OF THESE COULD BE CONTRIBUTING FROM THE AN. I HAVE QUITE A FEW HEADACHES, BUT
THEN AGAIN I HAVE MAJOR ALLERY ISSUES AND I AM LIVING IN FLORIDA WHERE I AM ALLERGIC TO ALMOST EVERY TREE AND GRASS. I GOT A REFERRAL
TO SEE A NEUROLOGIST, I NEED TO MAKE AN APPOINTMENT AND JUST TAKE THESE MRI REPORTS WITH ME. I HAD ONE IN GAINESVILLE, BUT HE IS NO
LONGER ON MY INSURANCE, SO I NEED TO CONNECT WITH SOMEONE IN MY LOCAL AREA. ANYONE ELSE HAVE ANY OF THESE WEIRD THINGS GOING ON? ::)
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6x8x12 mm diagnosed 7/11/07 left side AN watch and wait. Partial hearing loss
left ear. Second MRI done 03/21/2008 waiting results. Unchanged from last year. 1.3 cm.Third MRI done 02/16/2009 1.3 cm unchanged. 4th MRI 12/18/09  Still 1.3 no growth, just some vascular chgs noted.MRI 11-30-12 no growth

Vivian B.

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Re: I ALSO HAVE A FEW NEW SYMPTOMS
« Reply #1 on: May 25, 2009, 04:16:38 pm »
Hi Agnes,

I am also on watch and wait. I have not read anything about AN connection to cognitivie changes. Headaches are common I beliieve due to the area being so small and confined and the pressure that the AN my cause. I myself felt very sick this weekend with headaches and ear ache, and wasn't sure whether or not it was due to my affected ear or just allergies. I suffer from allergies as well. As for being tired, I was starting to feel more tired than usual even before being diagnosed and found myself taking longer to do the normal chores whether at work or at home. If your symptoms persist and your next MRI is not for awhile, I would consult a doctor just to check. You did not mention the size or location of your AN.

Vivian
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CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

agnes

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Re: I ALSO HAVE A FEW NEW SYMPTOMS
« Reply #2 on: May 25, 2009, 05:19:06 pm »
Hi Vivian,
I just finished reading your post not to long ago. The cognitive changes and depression were sent to me from the ANA association. The transcripts
were taken from the 2007 18th annual AN symposium in Phila PA and this was written by Elisabeth J.S. Kunkel MD. I found it very interesting actually.
My AN is small 1.3 cm on the left and is still confined within my internal auditory canal. I think this information should have posted at the bottom below
my message. I know what you mean about allergies, etc. Its hard to determine where the symptoms are coming from. I do know that my headaches
have increased and I have problems sleeping at night. I am so glad to be able to communicate with others and I enjoy reading on this forum, some things
are good and some not so good...but we all have one thing at least in common....we don't have to go through it alone and we have others caring enough
to give their stories and advice. Thank you Vivian..... 
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6x8x12 mm diagnosed 7/11/07 left side AN watch and wait. Partial hearing loss
left ear. Second MRI done 03/21/2008 waiting results. Unchanged from last year. 1.3 cm.Third MRI done 02/16/2009 1.3 cm unchanged. 4th MRI 12/18/09  Still 1.3 no growth, just some vascular chgs noted.MRI 11-30-12 no growth

Sheryl

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Re: I ALSO HAVE A FEW NEW SYMPTOMS
« Reply #3 on: May 25, 2009, 05:56:56 pm »
Agnes - I, too, am a wait and watcher - 7-1/2 years with only a 2-3 mm increase.  My husband had surgery and then CK on another type of benign brain tumor, a meningioma.  We could write a book on the crazy things we have been doing but i have never heard them related to AN's.  When questioning our neurologists (we both go to different docs), we were told this happens when you have a lot going on and your mind is in all directions.  And, as much as we hate to hear it, age is a factor (we are 62 and 66).  Depression also can cause cognitive and sleep problems.  Don't hesitate to talk to your doctor about how you are feeling - maybe even your primary care doc.
Sheryl
p.s.  We are in Florida during the winter - west coast near Fort Myers.
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9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

agnes

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Re: I ALSO HAVE A FEW NEW SYMPTOMS
« Reply #4 on: May 25, 2009, 06:35:42 pm »
Thank you Sheryl for your input......I have been under a lot of stress lately, hopefully it is just from that. I do need to connect with a Neurologist here though.
I was just curious since I read the article in the AN notes medical report. My job is talking about a second major lay off coming up, so I am worried about that
since my husband is on SS disability and I am the major breadwinner. We have lost money on our home due to the economy crashing, etc. We would love to move
out of Florida, but nothing is selling, well, you know how it is....I need to find a way to keep myself a little calmer I guess. I will be 56 this year and stress does
begin to deal with us in strange ways with age. Once again, thank you for sharing.......I just love this forum.........
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6x8x12 mm diagnosed 7/11/07 left side AN watch and wait. Partial hearing loss
left ear. Second MRI done 03/21/2008 waiting results. Unchanged from last year. 1.3 cm.Third MRI done 02/16/2009 1.3 cm unchanged. 4th MRI 12/18/09  Still 1.3 no growth, just some vascular chgs noted.MRI 11-30-12 no growth

suboo73

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Re: I ALSO HAVE A FEW NEW SYMPTOMS
« Reply #5 on: May 27, 2009, 06:03:52 am »
Hi Agnes! 

I am 53 and i think i do crazy things, too - like drop more items than i think i should (and i hate it when they are breakable or make a mess!)
I think sometimes my concentration is just not as good as it was before....  But i continue to work and write more stuff down, as necessary, etc., etc.  I consider this my brain exercise and hope to continue for awhile longer.

To me, it seems like you have a lot on your plate, with being primary breadwinner, and no way out of Florida. 
But, just to be sure, i like Sheryl's suggestion - do a checkup and get the neuro appt.
I have been to my PC doc for other things recently. And i know there are caring folks out there, just have to find the right fit.   My ENT is one of them.    ;D

My thoughts and prayers are with you today.

Keep us posted!
Sue

PS  Ernie is from Tampa, are you near there?
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suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

agnes

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Re: I ALSO HAVE A FEW NEW SYMPTOMS
« Reply #6 on: May 27, 2009, 04:57:33 pm »
Hi Sue, yes I guess we all so crazy things without thinking at times. Maybe I am just being a little paranoid since I know that I have this AN. I guess
its easy to blame things on that. No, we are not near Tampa, we are northern right below Georgia on the coast side. I am a transplant, I am actually
from NJ, then moved to NC, then to PA and then here to FL. I am not real crazy about this county that we live in, but I won't get into that.
I made an appt with a new Neurologist in 3 weeks, that is the earliest appt they had. Someone I know saw one of the drs in this group, so they suggested
I call and all of them are supposed to be good. I do have a PC here, but she is a physicians assistant and she is OK for unimportant things. I have not found
a good PC here yet and I have been here for 6 years. When I lived up north, I went through multiple phys before I found the group that I absolutely
adored, wish I could get back in with them. So, I will make an appt with my PC as well and get some blood work and possible get on some medicine if
indeed it is just stress. I too work every day about 9 hours actually and sometimes it gets tough..but we do what we have to do...at least we have jobs
a lot of people are losing theirs or have none. There is much to be thankful for and I much appreciate your response. All of you are so caring and thats what
makes this forum so special.
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6x8x12 mm diagnosed 7/11/07 left side AN watch and wait. Partial hearing loss
left ear. Second MRI done 03/21/2008 waiting results. Unchanged from last year. 1.3 cm.Third MRI done 02/16/2009 1.3 cm unchanged. 4th MRI 12/18/09  Still 1.3 no growth, just some vascular chgs noted.MRI 11-30-12 no growth

ppearl214

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Re: I ALSO HAVE A FEW NEW SYMPTOMS
« Reply #7 on: May 27, 2009, 08:11:59 pm »
Quote from: suboo73 on May 27, 2009, 06:03:52 am
PS  Ernie is from Tampa, are you near there?

Ernie's birthday today :)... hoping he responds soon. I believe he lives near Tampa but still cheers on our Boston Red Sox!!!

Hi Agnes,

You are correct and the ANA is recognizing that cognitive and behaviour/emotional issues can play a role in our AN journey.

On our discussion forums, they have fairly recently created a new forum for "Cognitive/Emotional" discussions and not sure if you have taken a moment to view the discussions there.   There have been an array of discussions there from handwriting issues to depression, etc, so it may be worth a peek.  There have been discussions in the medical community about how stress comes into play with physical illnesses and how stress can affect and be counteracted upon (did that wording make sense?).

Hoping you are doing ok.  If you are in the Jacksonville area, there are some terrific teams in the area as well.  Please confirm if you are in the Jacksonville or Savannah, GA area.

Phyl
« Last Edit: May 27, 2009, 08:13:42 pm by ppearl214 »
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suboo73

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Re: I ALSO HAVE A FEW NEW SYMPTOMS
« Reply #8 on: May 28, 2009, 04:16:26 am »
Quote from: agnes on May 27, 2009, 04:57:33 pm
There is much to be thankful for and I much appreciate your response. All of you are so caring and thats what makes this forum so special.

Hi Agnes! 
I am originally from PA, then moved to NC then to Virginia!  Not sure i would want to live in Florida either - i have enough allergies in the Shenandoah Valley!
The first phy. assistant i ever had in VA was one of the best, and i really do miss her, too - so i can relate.  Right now, i just want to fire all my local docs and start over!  But, instead, i am trying to take it one step at a time. 

Anyway, it sounds like you are taking action, seeing your PC and getting some tests done.
And working 9 hours a day - wow!  You are doing great!

Yes, i agree with you 150% - we have jobs and so much to be thankful for, especially this forum.
Keep writing, we are all here for you, will support you and can certainly relate.

All my best,
Sue
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suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

agnes

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Re: I ALSO HAVE A FEW NEW SYMPTOMS
« Reply #9 on: May 28, 2009, 11:03:46 am »
Hi Phyl,
Yes, I have noticed the cognitive/emotional section and I have been reading through it. Yes, I
am in Jacksonville and I scheduled an appt this Thomas Snyder at Beaches Neurology from a
recommendation. I don't go for 3 weeks but I want to touch base with a Neurologist since the
last one I have is no longer on my insurance plan. If you know of some terrific teams here in
Jacksonville, please let me know. I don't really know any drs. here although I have been here for
6 years. I usually ask around and see who other people or co-workers went to.
Thank you for responding.
take care
Agnes   
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6x8x12 mm diagnosed 7/11/07 left side AN watch and wait. Partial hearing loss
left ear. Second MRI done 03/21/2008 waiting results. Unchanged from last year. 1.3 cm.Third MRI done 02/16/2009 1.3 cm unchanged. 4th MRI 12/18/09  Still 1.3 no growth, just some vascular chgs noted.MRI 11-30-12 no growth
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