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Author Topic: Yet another new one  (Read 16259 times)

volleymom

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Yet another new one
« on: November 10, 2009, 01:55:38 pm »
Hello out there!
2 weeks from today I will be done with retrosigmoid surgery and recovering at Oregon Health Sciences University.  Time sure does speed up once you only have 1 month to go.  I am feeling excited to get "this" over and done with.  I have spent the last 2.5 months reading the posts on this forum and it has helped me to know what to expect.  I am a nurse who works nightshifts, but I have never had surgery.
I had a mild facial numbness for about 20 months.  It was starting to get worse this past summer, one side of my tongue was getting numb too, and I felt like I was drooling. The MRI with contrast showed a 9 X 16 mm acoustic neuroma putting pressure on my pons and trigeminal nerve.  Once I was given the diagnosis, I realized that I had been ignoring as occasional stabbing pain in my ear.  I also had been feeling pressure in my ear. My left eye has been a little dry for several years. My hearing was fine when tested in August.  My balance is still good, but if I try vestibular exercises, I am tippy.
My surgeon came highly recommended by 3 family friends and I left the consultation appointment feeling happy that I didn't have to get it done immediately.

Kathy
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9mm X 16mm diagonsed in August 2009.  Retrosigmoid Nov, 2009 at OHSU in Portland, OR.
post-op had some facial nerve weakness, nearly resolved. Mild tinnitus. Left sided deafness.

epc1970

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Re: Yet another new one
« Reply #1 on: November 10, 2009, 02:06:31 pm »
Hi Kathy
I had my surgery at OHSU also. Is your surgeon Dr Delashaw? He was my surgeon and if he is your surgeon I can tell you that you are in good hands. Regardless, OHSU treated me so wonderfully post op.The nursing staff was phenominal-they will take good care of you.  I wish you the best of luck with your surgery and recovery Kathy!
Erin
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lawmama

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Re: Yet another new one
« Reply #2 on: November 10, 2009, 02:11:23 pm »
Hi Kathy,

I think many of us also ignored symptoms for a long time.  It is easy to convince ourselves that we are imagining them or that they are just "normal" for us.  Looking back, I don't know how I could have thought this was normal!  I hope you will have some relief after your tumor is removed.

Good luck with your surgery on November 23rd.  It sounds like you have done your research and are very comfortable with your doctors.  I think that is so important!

Lyn
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9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

Sue

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Re: Yet another new one
« Reply #3 on: November 10, 2009, 02:23:42 pm »
Best of luck to you Vollymom with your surgery and eventual recovery.  Wishing you all the best, from Vancouver, WA, former Portlander.

Sue
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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

Kiwi Don

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Re: Yet another new one
« Reply #4 on: November 10, 2009, 03:29:20 pm »
Hi Kathy,

Welcome to forum.
Well wishes for your surgery later in the month and keep us informed of how things go.

Don
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24July09 Diagnoised with Left AN 2.0cm x 1.9cm
Translab Scheduled 7April10

"Received the Ticket, Boarded the Train, and now the Journey has begun??"

Jim Scott

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Re: Yet another new one
« Reply #5 on: November 10, 2009, 03:29:34 pm »
Hello - and welcome, Kathy ~

Although we hate to see anyone diagnosed with an acoustic neuroma I want to thank you for posting after being a 'lurker' for 2½ months.  I'm pleased to learn that the posts you read while 'lurking' were helpful to you.  You seem to have the right attitude about your treatment decision, doctor & facility and this will help as you move closer to what is major surgery.  Fortunately, the majority of AN surgical patients handle it well and return to relatively normal lives within a few weeks of the surgery.  As a nurse and a reader of these forum messages, you know that there is always some risk involved with the AN removal surgery but it is not a huge risk and most post-op deficits are generally temporary.  Of course, our members are here to help and support you as you approach, go through and recover from the upcoming surgery.

Like you, I ignored my AN symptoms for some time, losing all hearing in the affected ear.  Finally, a combination of noticeable imbalance, a severe loss of appetite (and subsequent 30 pound weight loss) along with the onset of unaccustomed lethargy and admitting that I suffered from intermittent stabbing pains on the (AN) side of my head drove my concerned wife to schedule an appointment for me with my PCP - who sent me for an MRI that discovered my 4.5 cm AN.  Successful tumor debulking followed by 26 FSR treatments took care of the AN while helping me to avoid any real complications.  I'm fine, now, and confident that in a short while, you'll be posting a similar statement.

I've added your surgery date on our AN Treatment Calendar http://my.calendars.net/an_treatments/d24/11/2009?authenticate=&display=M&style=B

Jim
« Last Edit: November 10, 2009, 03:33:05 pm by Jim Scott »
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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.

Kaybo

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Re: Yet another new one
« Reply #6 on: November 10, 2009, 04:01:16 pm »
Hey Kathy~
Just wanted to say WELCOME - ask any question -  we are used to that!!

K   ;D
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Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

CHD63

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Re: Yet another new one
« Reply #7 on: November 10, 2009, 04:41:55 pm »
Hi Kathy .....

..... and welcome to this group of very understanding and supportive people!  We are here to help in any way we can, so keep in touch.

Thoughts and prayers as you approach your surgery date.

Clarice
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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

Rivergirl

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Re: Yet another new one
« Reply #8 on: November 10, 2009, 07:16:10 pm »
I think ignoring symptoms is common, most of us experienced them slowly so they were eay to ignore at first.  Good luck with your surgery, Oregon is one of my favorite States so I know you are in good hands.
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Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

sgerrard

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Re: Yet another new one
« Reply #9 on: November 10, 2009, 10:20:19 pm »
Hi Kathy,

Assuming you live in or near Portland, I can also say Hi neighbor.

Besides all the support you will get here on the forum, there is also a Portland ANA group. We had a meeting in September, and I expect the next one will be January, maybe? When it comes up it will get posted here, and you can come meet some ANers in person.

Welcome and best wishes for the 23rd.

Steve
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8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Tricia (horsekayak)

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Re: Yet another new one
« Reply #10 on: November 10, 2009, 11:14:38 pm »
Hi and welcome from another newbie who lurked for a while before posting.

Be glad you're here (if you've GOTTA be somewhere like this!!!!)...This is a great bunch of helpful and supportive folks..best thing i've ever done was start asking questions and using the ANA's  Willing to Talk phone list.   

the waiting part is hard...i'm waiting on calls from my hospital of choice re: dates for appts/surgery...it is best to stay busy and keep working if you can...this forum helps me when i get "antsy"

Best wishes to you from someone who feels like the pacific northwest is one of my second homes..dennis (hubbie) was born in Troutdale, was raised in Seattle area so we visit the area often. 
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Tricia (horsekayak)-Diagnosed 8/10/09
1.5 cm right side AN
Gainesville, GA (near horses and Lake Lanier)
Linac radiosurgery at Shands Hospital/Univ of Florida  12/1/09  Go Gators!!!

"Excellence is to do a common thing in an uncommon way"...BT Washington

no2hopkins

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Re: Yet another new one
« Reply #11 on: November 13, 2009, 11:36:31 am »
Welcome and good luck.
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Think twice before buying the Johns Hopkins hype.

gingerbread6

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Re: Yet another new one
« Reply #12 on: November 13, 2009, 08:14:53 pm »
Hi Volleymom,

I wish you well in your upcoming surgery. I will be following in your footsteps. My surgery is scheduled for Dec. 28th in Boston. Keep in touch, and keep us posted.

My thoughts and prayers are with you!

Gingerbread6
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Kathy M

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Re: Yet another new one
« Reply #13 on: November 13, 2009, 08:43:11 pm »
HI Kathy!

I am wishing for you all things good for your upcoming surgery.  The road leading up to it is a long one, but before you know it, it will all be behind you - a great place to be.  I look back at the years before my surgery and think about all the symptoms that I had but didn't give a thought to - tingling cheek, slight hearing loss (I just thought it was my age and everyone was mumbling), too much saliva!! (not sure what I attributed that to, but I'm sure I put some meaning around it).  Balance was my biggest issue that I complained about for a long time, but my doctors blew that off for 6-7 years.  Oh well. 

Now it's done, and it will be for you too!  Sounds like you found a great place to have your surgery.  Wishing you peace of mind, positive spirit, and loving warmth from family and friends.  Upward and onward!

Kathy
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AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

leapyrtwins

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Re: Yet another new one
« Reply #14 on: November 14, 2009, 11:50:49 am »
Hi, Kathy.

I had retrosigmoid too (but in Illinois) and wish you the best.

Jan
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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
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