Author Topic: A word of thanks to the unsung heroes on this forum  (Read 3490 times)

WetEver

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A word of thanks to the unsung heroes on this forum
« on: April 06, 2009, 08:12:43 pm »
Well, you can add me to the list of "newbies".  I was diagnosed last month and have spent pretty much the last 30 days reading this board.  I just can't get enough!  You folks have helped me tremendously in dealing with this tumor. 

I had a seizure in January 09.  As a result my primary care doctor sent me to a neurologist for tests.  One was the brain MRI.  And, not 4 hours after getting out the the machine, the doctor called to tell me I had a Vestibular Schwannoma.  A WHAT???  Well, thanks to you fine folks, I am well versed on the subject now.  It is very small, 1cm.  I have had gradual hearing loss and increasing tinnitus (unilateral) over the past 6 years or so which both my ENT and I attributed to working for a major airline on the ramp.

The Neurologist referred me to a neurosurgeon, who recommended radiation therapy, Cyber Knife.  Radiation scares the crap out of me!  I went to see my ENT and we discussed radiation and microsurgery.  Come to find out he assisted on an acquaintance of mine who had the surgery about six years ago locally (Norfolk, VA).  Her tumor was very large 3.5 cm.  She was left SSD and partial facial paralysis on her left side.  His recommendation either radiation therapy or House Ear Clinic, where he studied for one year.  I was kinda glad he didn't want to do it.

I contacted House, sent in my MRIs and Dr Antonio de la Cruz called me back in a few days.  It was instant, blind trust!  He made me feel so comfortable and impressed me beyond words.  We discussed my options and he recommended a middle fossa approach, as I still have about 60% of my hearing.  I am tentatively scheduled for surgery on Cinco de Mayo, pending the approval of my insurance (fingers crossed)! 

Just having made the decision has taken such a weight off me!  That and just knowing that when I need answers that I can find them here have been a tremendous help!  Bless you all!
 

Tumbleweed

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Re: A word of thanks to the unsung heroes on this forum
« Reply #1 on: April 07, 2009, 12:33:21 am »
Welcome to our forum, WetEver! And best wishes for a successful surgery and ultra-fast recovery. We are all sorry you, too, have an AN, but we are glad you are here with us all.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

suboo73

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Re: A word of thanks to the unsung heroes on this forum
« Reply #2 on: April 07, 2009, 03:28:56 am »
Wetever, 

I will chime in and say welcome, too!  You are right, this place is an awesome  :D , such fantastic folks here, with an amazing 'collective' knowledge!  You and i - we are so lucky to have the benefit of reading the experiences of those gone before us.

Me - i am here thanks to my sister, who was diagnosed 6 months prior to me...  That led me to go to some more 'experienced' docs who diagnosed me as well.
For me, surgery scares me (!), and my AN is 'smaller,' so i am still in W & W mode.  I have seen 2 ENTs, one neurosurgeon, and one radiosurgeron, each with varying opinions.  If i had to make a decision today, i believe i would choose CK and go to Stanford.  --  I think it is GREAT that you have chosen House, i hear good things regarding their training and experience!  And, you might even get to meet some fellow AN folks from that area of the country - kul!

My thoughts and prayers are with you on this journey.
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

EJTampa

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Re: A word of thanks to the unsung heroes on this forum
« Reply #3 on: April 07, 2009, 08:23:05 am »
Hello Wetever!
 
Let me add my welcome, and I too am sorry that you had to find your way here.  Having a vestibular schwannoma is certainly no fun, but also not the end of the world.
 
My surgery was on March 5th, so you will be 2 months to the day after me! :).  I also had about 60 percent of my hearing in my right ear, but the tumor was stuck very badly to the hearing nerve, and rather than leave a piece of the tumor in my head, they opted to damage the nerve.  I can still hear from say headphones turned up real loud, but it's distorted and low tones only.
 
Every tumor is different, and I think you are doing the right thing by attacking it while it is still small.  House is one of the best places in the country, probably the world, to have your surgery performed.  I chose another great physician who operates out of Tampa General Hospital, mainly because of how convenient it was, but also because of his success rate with minimizing post-operative complications such as facial weakness and headaches.
 
I'm thrilled that you have reached this point so quickly and are at peace with your choice of physician.  Many, including myself, struggle with this part of the journey.  I have to tell you, from start to finish (am I finished?), choosing between the three options and then choosing a physician were the toughest part for me.
 
We will be praying for a great outcome and a quick recovery for you!
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

Jim Scott

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Re: A word of thanks to the unsung heroes on this forum
« Reply #4 on: April 07, 2009, 01:13:01 pm »
Wetever:

Hello - and welcome!  Of course I regret that a seizure and acoustic neuroma diagnosis brought you here but under the circumstances, I'm glad you discovered us.

The House Ear Institute has a sterling reputation and I'm sure you'll be in good hands.  That you're obviously confident and comfortable with your treatment/facility/doctor decision is encouraging.  I've taken the liberty of adding your surgery to our 'AN Treatment Calendar' http://my.calendars.net/an_treatments/d05/05/2009?authenticate=&display=M&style=B.  Please feel free to elaborate or add anything you wish to the entry, I just wanted to get you listed. 

We'll look forward to seeing your posts...and thanks for the very kind words about these forums.  :)

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.

kathylittlejohncobb

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Re: A word of thanks to the unsung heroes on this forum
« Reply #5 on: April 07, 2009, 01:35:19 pm »
Like the others, I am sorry that you have an AN, but also want you welcome you here and give you a "virtual hug." 
I am also a House alumnus, and know that you will be in excellent hands there. 
God bless you on your new journey,
Kathy
Retrosigmoid at House/St. Vincent's in Los Angeles 4-4-06; partial hearing saved on AN side;
Dr. Marc Schwartz & Dr. Rick Friedman, my heroes!

cindyj

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Re: A word of thanks to the unsung heroes on this forum
« Reply #6 on: April 07, 2009, 02:24:34 pm »
Another Welcome to the forum!  Yes, making the teatment decision and setting a date is such a huge relief! You are going to have quite a memorable Cinco de Mayo!   

I was at House for my surgery in Nov - am doing fine now - will be glad to answer any questions you may have about the trip out there, as I'm sure many other House folks would be.

Best of luck to you and please keep us posted,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Lilan

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Re: A word of thanks to the unsung heroes on this forum
« Reply #7 on: May 05, 2009, 09:18:44 pm »
I spoke to Dr. Brackmann today for the first time and he mentioned that both he and Dr. House had done surgeries today.

Naturally I immediately shrieked, "Oh, did you do WETEVER?", remembering that her surgery was today at House, if not precisely who her doctors were. :D :D :D

Needless to say the poor man had no idea what I was talking about or indeed probably what word I had said, since 'wetever' is not really one, but being polite, he recovered and said "No, we had x-type and y-type of surgery today" (neither were acoustics, which I think he figured answered my question somehow, and in fact it did.)

:D :D :D


Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

 


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