Author Topic: was hoping to never find myself here again...  (Read 4484 times)

lora

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was hoping to never find myself here again...
« on: July 04, 2010, 12:17:24 am »
Was here 3 years ago and after 2 open head surgeries and a GK, I was hoping to put it all behind me.  Well, I finally followed up with the neurologist after I had a grand mal seizure (and finally figured out why my tongue was always sore :)  He is sending me to the neurosurgeon again as it appears the little bugger didn't go away as much as they wanted.  It is now 2 cm x 2. cm--smaller than I started out, but "still a significant tumor".  I don't know if I have the strength to go thru another surgery.  I am really just feeling like I got over the last 3 (my hair has grown back!)  I might could do another GK, but those open headed ones were not fun!!! :(  I guess I won't know the plan until after I see the surgeon, but I am sure feeling disheartened... :'(
4.7cm x all over my head, filling 4th ventricle, squashing the brainstem
translab by the awesome Dr.Tomaras 4/12/07
retrosigmoid, Drs. Tomaras and Steuer 6/4/07
GK in Oct. for the little bit left?
2007--the year of the head "what a long, strange trip it's been"

lori67

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Re: was hoping to never find myself here again...
« Reply #1 on: July 04, 2010, 06:19:45 am »
Lora,

I can't say I blame you for the way you're feeling!  Sounds like you have a persistent little (not-so-little, actually) bugger there.

I hope the surgeon has some good treatment options for you and you can find one you feel comfortable with.  I know you'll find the strength to get through whatever you decide on - and for the times when you can't seem to find it - we'll be here to help you through

Keep us posted and good luck at your appointment.

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

CHD63

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Re: was hoping to never find myself here again...
« Reply #2 on: July 04, 2010, 07:00:32 am »
Lora .....

You have certainly had WAY more than your share of trouble with a very pesky acoustic neuroma.  As Lori said, I pray you will find the right doctors to direct the path of treatment at this point.

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

jerseygirl

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Re: was hoping to never find myself here again...
« Reply #3 on: July 04, 2010, 08:42:38 am »
Lora,

Sorry you have been through so much. As a person who also had a huge tumor and then regrowth, I would advise you to actually contact a few neurosurgeons to get different perspectives because what is difficult for one is not very difficult for another. I learned it from experience. Some neurosurgeons , like at HEI, offer consulting services for free. You don't have a tiny new tumor that anybody can successfully operate on.  Your situation sounds like a tough one but not impossible if you get necessary expertise. Honestly, I would ask point blank your original neurosurgeons what options they can offer since they have already done two different surgeries without taking the tumor totally out. I hope whatever it is you decide works out for you. Good luck and keep us posted. Meanwhile, many hugs to you!

                                         Eve

 
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Jim Scott

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Re: was hoping to never find myself here again...
« Reply #4 on: July 04, 2010, 01:00:23 pm »
Lora ~

I won't type 'welcome back' because, although you certainly are welcome, I'm sorry that you have a medical reason for posting here.  Two surgeries plus radiation should be enough but apparently, your AN is a tough, stubborn little bugger that is refusing to die, as it should have, by now.  I trust that radiation will still be an option for you when you finsh your doctor consultation.

Please keep us updated on your situation and know that we'll support you 100%, whatever you decide to do.

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.

Syl

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Re: was hoping to never find myself here again...
« Reply #5 on: July 04, 2010, 02:34:33 pm »
Lora:

That's alot to go through. One surgery took alot out of me. Where does one find the strength to keep going? I guess the best we can do sometimes is take it one day at a time. I'll keep you in my prayers. And, please keep us posted.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

moe

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Re: was hoping to never find myself here again...
« Reply #6 on: July 05, 2010, 09:45:16 am »
Lora,
 OH I'm so sorry to hear about your circumstances. You know there are people here who care  and know what you've been through (not the multiple surgeries, but the anguish).

Keep posting and let us know what different options you have. Hopefully like Jim said, it can be zapped with GK.

Hang in there, one day at a time.
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

skamper

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Re: was hoping to never find myself here again...
« Reply #7 on: July 12, 2010, 09:23:27 pm »
Wow Lora, that is a lot to handle.  I had one surgery and I'm still tring to get over it.  Keep us posted as to what you find out.  We will be here to help you.
Good luck and you will be in my prayers!
Susan
Diagnosed 12-09
AN right side 2.3 x 2.6 x 1.9
97% balance loss, minimal hearing loss
Surgery 4-2-10 at Methodist Hospital, Dr. Long and Moore
1.5 cm tumor left on 7 nerve.  Gamma knife 1-2013

Vivian B.

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Re: was hoping to never find myself here again...
« Reply #8 on: July 15, 2010, 08:52:22 am »
Hi Lora,

A lot to handle, but keep strong just like you have in the past. My prayers are with you.

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

satman

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Re: was hoping to never find myself here again...
« Reply #9 on: July 21, 2010, 07:51:03 pm »
Lora, how are you doing ?
your in my thoughts and prayers.
kicked my little 8cm buddy to the curb-c ya !

Sonja

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Re: was hoping to never find myself here again...
« Reply #10 on: July 25, 2010, 07:39:05 am »
Iora:

I am very sorry to hear that darn AN will not stay down. PLease be strong and keep the faith. You are in my prayers. I wish you the best. Stay positive.

Sonja
Symptoms 2005
AN diagnosed January 2007
Watch & Wait until now
Surgery (Translab) scheduled February 18, 2009 HEI (Dr. House, Dr. Schwartz, Dr. Stefan)
No servicable hearing in affected ear

Mei Mei

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Re: was hoping to never find myself here again...
« Reply #11 on: July 25, 2010, 03:45:23 pm »
I'm so sorry this is happening to you.   You need all the strength and concentration in the world to make major decisions.   You know you have us here to support you 24/7.

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Jeanlea

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Re: was hoping to never find myself here again...
« Reply #12 on: July 25, 2010, 03:52:44 pm »
Lora,

So sorry to hear about your very persistent AN.  I'll bet that you have even greater strength.  I'm sending out good thoughts that it will be totally removed once and for all and that you have a quick recovery.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD