Author Topic: I am Back!  (Read 2645 times)

bern

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I am Back!
« on: September 08, 2009, 04:10:45 pm »
It has been along time since I have been on but I realize I need support. My one year MRI showed no growth on AN.  My deafness in left year still continues, as does the tinnitus.  I have a severe ear pain that comes on so suddenly that my radiologist, who did my gamma knife, believes it may be seizures. So now I must start with a neurologist to find the cause of the pain and a leaky eye with a wicked twitch that just started. 

I thought one treatment and no tumor growth was great but now new symptoms are developing and I am afraid they are going to be bad.

ppearl214

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Re: I am Back!
« Reply #1 on: September 08, 2009, 05:45:11 pm »
Hey Bern

Great to hear from you again! It's been a while.

Remind me please where you had the GK done?  Did the radiologist who did your treatment note any possibilities of potential swelling going on, esp. since its a year post GK? It can happen.......

Hang in there... and sending wellness wishes your way.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

suboo73

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Re: I am Back!
« Reply #2 on: September 08, 2009, 06:41:47 pm »
Hi Bern,

I want to say hello, and sorry you are not feeling so well these days...
But also want to say CONGRATS on no tumor growth!

Since  i am still in W & W, i can not offer you any advice at this time to help with your symptoms-i am sure others will chime in that have experience.
But i will send many, many prayers your way for your to find some relief.
Sincerely,
Sue



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

wendysig

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Re: I am Back!
« Reply #3 on: September 08, 2009, 11:37:14 pm »
Hi Bern,

Sorry to hear that all is not well.  As Phyl noted, it could be that your tumor is swelling and causing these symptoms.  I hope this turns out to be the case and not seizures.  Please keep us posted.

Best wishes,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

bern

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Re: I am Back!
« Reply #4 on: September 09, 2009, 04:03:58 am »
There is no swelling at the site or any sign of growth. I will see a neurologist on the 23rd and just hope nothing new has been triggered by the gamma knife which I had done july 08.  I will keep you posted.

leapyrtwins

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Re: I am Back!
« Reply #5 on: September 09, 2009, 05:52:52 am »
Bern -

sorry to hear about your new symptoms  :(  I hope that they are nothing serious and that the neurologist can shed some light on them at your visit on the 23rd.

Please keep us updated.

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

Jim Scott

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Re: I am Back!
« Reply #6 on: September 09, 2009, 11:47:36 am »
Hi, Bern ~

Like everyone else, I was sorry to learn of your new symptoms that - according to your recent MRI - don't appear to be directly connected to your irradiated AN.  Of course I hope your consultation with the neurologist can help shed some light on the cause of these disturbing symptoms.  However, it's hard to simply dismiss your AN treatment (radiation) as having absolutely nothing to do with this development.  I'm certainly not a doctor but because of the sensitive location of the AN, it seems as if even a tiny bit of swelling, which is common, post-radiation, isn't the possible cause of the new symptoms.  I can easily understand why you're worried about this but until tests can be done to explain the symptoms, worry will be of little use, even though it is a perfectly normal reaction.

For what it's worth, I underwent FSR just about 3 years ago.  This summer, I've experienced some unpleasant sensations in the 'AN area' of my skull that I attribute to residual swelling of the dying tumor.  A scheduled MRI next month should prove or disprove my theory.  My point being that with radiation treatment, swelling can occur for a long time after the treatment and sometimes cause annoying, even scary, symptoms.  I trust yours will soon subside and you'll be able to move on. 

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.

Vivian B.

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Re: I am Back!
« Reply #7 on: September 09, 2009, 06:02:24 pm »
Hi Bern,

Sorry to hear about your symptoms but glad that there is no growth. Like many others have said, don't worry until you see the Neurologist and he/she can provide more details on your symptoms. You may find they are only temporay.

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

wendysig

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Re: I am Back!
« Reply #8 on: September 09, 2009, 11:24:33 pm »
Hi Bern,

No growth is good news.  I hope your neurotologist can give you some clear answers when you see him on the 23rd.  Hopefully this is something simple and not a new worry.  I'm crossing  my fingers and saying a prayer for you that all will be well.  Keep us posted and keep your spirits up.

Best wishes,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!