Author Topic: Is the cure worse than the condition?  (Read 40678 times)

Rivergirl

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Is the cure worse than the condition?
« on: April 24, 2010, 04:01:08 pm »
Just wondering how all of you feel about this, did the surgery help? Are you glad you did it?
Thanks
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!

Kaybo

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Re: Is the cure worse than the condition?
« Reply #1 on: April 24, 2010, 04:05:08 pm »
what surgery are you referring to exactly...I'm kind of lost here...

K   ???
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: Is the cure worse than the condition?
« Reply #2 on: April 24, 2010, 04:45:01 pm »
Hi Rivergirl .....

If you are referring to surgery for AN removal, I am very glad I did it ..... with no regrets whatsoever.  See signature below.

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

Syl

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Re: Is the cure worse than the condition?
« Reply #3 on: April 24, 2010, 05:38:49 pm »
Rivergirl:

The cure (surgery) can result in additional damage. I lost additional hearing on my AN side with the surgery. But, I didn't want to let the darn thing grow and risk more damage. The bigger the tumor the more complicated the situation gets. It's a risk either way.

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.

Jim Scott

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Re: Is the cure worse than the condition?
« Reply #4 on: April 24, 2010, 06:12:57 pm »
Rivergirl ~

You pose an interesting question that I suspect cannot have a definitive answer, as each AN surgery patient is unique in many ways, i.e. symptoms, tumor size and exact location, surgeon's skill,etc.

The inescapable reality is that the AN, if left untreated, will eventually kill the patient.  That being the case, the next decision is the form of treatment.  For some, like me, being diagnosed with a 4.5 cm AN precluded radiation so debulking surgery was recommended.  That worked out splendidly for me, but as we know, AN removal surgery does not always have a totally positive result and some AN surgery patients would answer your query with a resounding 'no!'  I'm not one of those.  

So, in my case, yes, the surgery (retrosigmoid approach) helped tremendously; all of my pre-op symptoms disappeared within 24 hours of the operation.  What post-op issues I had were mostly minor and transitory, for which I'm very thankful.  The debulking procedure allowed the remaining tumor to be successfully irradiated and this pretty much ended the problem, albeit with a few very minor remaining deficits.  I should add that the AN had destroyed my hearing in the affected ear well before my diagnosis and surgery and I had completely adjusted to being SSD before I ever saw my neurosurgeon.  

I can only speak for myself, of course, but I suspect that the majority of AN surgery patients would answer your question ("was it worth it?") in the affirmative.  We'll find out.

Jim
« Last Edit: April 24, 2010, 06:15:01 pm by Jim Scott »
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.

Adrienne

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Re: Is the cure worse than the condition?
« Reply #5 on: April 24, 2010, 06:32:11 pm »
I agree with Jim.  Depends on when you would have asked me.

Prior to knowing I had an AN, I didn't think I had many symptoms.  I had slight hearing loss in one ear.  So in that regard, I would have been happy to stay like that with such minimal symptoms!

As I waited for my surgery, I became more aware of some symptoms.  Sharp electric shocks down the side of my face that I would have done anything to get rid of.  Double vision.  Not great balance (although nothing to really complain about).  I knew that this would all get worse though, so I was excited (?! seems weird to get excited over brain surgery) to get it over with and get on with my life.  Having said that, I was also PETRIFIED.  My surgical team made it clear that they hate doing this surgery on people because in almost all cases you come out of it worse than when you went in (at the very minimum, with less hearing.......and with all kinds of other risks).

Hindsight being 20/20 though, I had the best of all worlds in some regards.  My facial shocks are completely gone (seriously wouldn't wish these on my worst enemy), my balance wasn't affected by the surgery, I kept some of my hearing (about 1/2 of what I had prior to surgery) and not really any other long term side effects (several short term ones after surgery, like headaches for a few months and numbness on my face/tongue, no fluid in my eye for a few weeks).  I did get tinnitus though, which I never had prior to surgery.  The trade off for getting rid of the shocking is a small price to pay in that regard.

In a perfect world we wouldn't need to make these choices at all, would we !!!  Am I glad I had brain surgery?  Heck, I sure wish I didn't NEED to!  Did I turn out great?  Absolutely.  Sure was hell anticipating it and all the nasty side effects though.  Talk about stressful!

As another plus though, I feel like it would take a heck of a lot to get to me these days.  Once you make it through something like this I can't speak for anyone else but I sure feel unstoppable at times (with a greater understanding of how fragile life is at the same time........how that's possible, I'm not sure).

I sure hope your resolution brings you peace some day and you aren't left wondering about the what ifs anymore.......Thinking about these things can make us crazy!

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

Syl

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Re: Is the cure worse than the condition?
« Reply #6 on: April 24, 2010, 07:36:17 pm »
Rivergirl:
I just realized I didn't answer the part about whether I'm glad I had the surgery. I don't regret having the surgery.
I want to add that I rarely had headaches before the surgery. Now, I suffer from chronic headaches. Still, I don't regret having had the surgery. Something had to be done about the tumor.

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.

Pooter

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Re: Is the cure worse than the condition?
« Reply #7 on: April 24, 2010, 08:29:03 pm »
Like Jim, I was diagnosed at such a size and location precluded radiation therapy..  I had very little choice in what approach was used.  Am I glad I had surgery?  I'm glad I did it because SOMETHING (i.e. surgery) had to be done, but like others I sure wish I didn't HAVE to do surgery.  I would have been just find with a broken leg, or arm or something as opposed to a brain tumor..  With that said, without the AN and subsequent surgery, I would have never met you fine folks.  I would have gone and and been comfortably oblivious to the fact that there are those people out there that suffer, struggle and overcome something called an "acoustic neuroma".  I'm a better person, in my opinion, for having a brain tumor.  I'm not sure I ever would have said that prior to 2 years ago.

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

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jaylogs

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Re: Is the cure worse than the condition?
« Reply #8 on: April 25, 2010, 02:00:52 am »
Well, I guess I am glad I did it, if the alternative would eventually be my death.  4 months post surgery and I am not better than I was before I had it.  Not that I am doing real bad, but I wasn't bad at all before I had surgery, just the hearinig and very few bouts of dizzyness.  Now, the hearing is about the same and the dizzyness is way worse than before, but manageable.  I am just glad to get that out of my head so I can go on with life! :)
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

leapyrtwins

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Re: Is the cure worse than the condition?
« Reply #9 on: April 25, 2010, 08:33:08 am »
Both my surgeries - AN and BAHA - were definitely better than not treating my AN and my SSD.

Neither are decisions that I regret.

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

ombrerose4

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Re: Is the cure worse than the condition?
« Reply #10 on: April 25, 2010, 09:12:24 am »
Despite all my post op problems, yes I am definitely glad I had surgery. My tumor was leaning against my brainstem, so who knows what could have happened. Just because AN's are benign, this does not mean they are not deadly!
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

yardtick

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Re: Is the cure worse than the condition?
« Reply #11 on: April 25, 2010, 01:32:11 pm »
Interesting question Rivergirl, because my Dr told my husband and I back in Feb in my case the cure is worse than the disease.  I've had the facial neuroma debulked so now I am watch and wait for a nerve graft.   

Would the nerve graft cure my chronic headaches and facial pain?  Probably not.  Would I have facial paralysis? Yes.  Do I suffer anxiety over this yes? 

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Lizard

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Re: Is the cure worse than the condition?
« Reply #12 on: April 25, 2010, 05:42:16 pm »
Sometimes when I have a day of really bad headaches I wish I didn't have the surgery and went for the radiation, but only for brief moments.  Over all I was just happy to get that thing out of my head. 
Tough question...made me really thing about it.
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

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nteeman

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Re: Is the cure worse than the condition?
« Reply #13 on: April 25, 2010, 06:22:40 pm »
Count me in the no regrets-glad column.  :)

Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
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Tracy Lynn

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Re: Is the cure worse than the condition?
« Reply #14 on: April 25, 2010, 11:46:25 pm »
Dr. Thedinger pretty much told me that I didn't have any option. My words, not his that I need surgery. I fully agree.

I do wish that I had been diagnosed before I'd lost so much of my hearing. As the date of the surgery grows nearer, I am experiencing more frequent and severe headaches.

If given the choice to wait, I don't know that I could. While I don't see it as a "cure", its prevention of inevitable digression of my health. 
Right ear, 3.5 cm  Diagnosed 3-23-10 pre-op symptoms: 90% loss of hearing, headaches, Tinnitus.
Translab surgery 5-18-10
Post-op symptoms: SSD, Tinnitus, wonky-head
BAHA implant: 9-2-10

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