Author Topic: Positive surgical outcomes??  (Read 10022 times)

LMH

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Positive surgical outcomes??
« on: May 07, 2008, 03:13:43 pm »
I am new to this forum (approx. 8x6 mm AN diagnosed 9/06) and am trying to make a decision regarding surgery, radiation or continuing to watch and wait.  I attended a support group meeting earlier this year and was quite disheartened by the complications (both temporary and permanent) experienced by those who have had AN surgery.  I would love to hear from anyone who has had a positive surgical experience. 

Thanks,
Lisa

jtd71465

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Re: Positive surgical outcomes??
« Reply #1 on: May 07, 2008, 03:26:49 pm »
Had surgery on 1/10/07 with no complications.  Full tumor removal, no facial nerve damage but I do have diminished hearing (about 42% on my AN side).

Joe-
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

leapyrtwins

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Re: Positive surgical outcomes??
« Reply #2 on: May 07, 2008, 04:26:02 pm »
Hi, Lisa & welcome  :)

I had surgery on 5/31/07 to remove a 2.5+ cm AN and I had a very positive outcome. 

I have no facial nerve damage and no lasting side-effects from the surgery except for SSD (single-sided deafness).  Some patients adjust to SSD very easily, but others like me choose to have BAHA surgery; still others decide to get a TransEar.  You can read more about these options - if you are interested - but searching the forum.

The size of your AN should mean you have the option of radiation or surgery - or as you say, you can continue to watch and wait since most ANs are slow growing.

Have you asked the ANA for any literature yet?  If you haven't, I highly recommend it - it's very informative and I found it very helpful. 

If you have any specific questions about my surgery or my recovery, feel free to ask.  You can either post them under this subject, or PM me. 

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

marymomof3

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Re: Positive surgical outcomes??
« Reply #3 on: May 07, 2008, 06:19:25 pm »
Hi.  I had surgery this past March.  The entire tumor was removed and I have no permanent facial damage.  My hearing was generally OK prior to surgery, but my hearing test last week indicated that I have about 80% voice recognition.  Oh, and the tumor was 1.8cm.
Diagnosed Jan 21, 2008 w/1.8CM AN on left side.  Had is removed on March 19th at NYU.  And I am super grateful for such wonderful doctors!!

chocolatetruffle

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Re: Positive surgical outcomes??
« Reply #4 on: May 07, 2008, 08:18:15 pm »
i had good outcomes from my surgery too, ie no major complications and no facial weakness.  The minor effects i experienced were difficulty to raise my left eyebrow for the first week and balance issues (or "wonky" head) for 2 mths which will pass in time.  My left eye also produced a reduced amount of tears and my left tongue was slightly numb, right now these are almost at 95% "normal" now.  The other complication i had had nothing to do with my surgery........i had a bladder infection =)  Hope this helps
chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan

Desilu

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Re: Positive surgical outcomes??
« Reply #5 on: May 08, 2008, 06:45:12 pm »
Hi Lisa,

I also had a very successful surgery. I had the usual post surgery issues, balance, dry eye, and some facial paralysis but they were all temporary. I was back to work full time in 8 weeks. I only lost about 15% of my hearing. Would I do it the same way again if I had to? Yes, in a heartbeat. If you would like to talk, just send me a personal email. I wish you the best.  Ann  p.s. I was on the watch and wait mode for 5 years!
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

LMH

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Re: Positive surgical outcomes??
« Reply #6 on: May 09, 2008, 11:00:52 am »
Thank you so much for all of your replies!  It's good to know that there are people out there who have had positive experiences with little or no complications.  It seems that everyone I've talked to has experienced both minor and major complications so it's nice to hear about some positive results!

Thanks,
Lisa

leapyrtwins

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Re: Positive surgical outcomes??
« Reply #7 on: May 09, 2008, 11:25:04 am »
Lisa -

I just wanted to add that there are more people with positive surgical outcomes on this forum who haven't responded to your post.  Jim Scott comes to mind.  If you want to read some of his posts, just "search".

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: Positive surgical outcomes??
« Reply #8 on: May 09, 2008, 01:27:22 pm »
Hi, Lisa:

As Jan mentioned, I had a positive surgical outcome and I'll be glad to share that with you. 

I was 63 and had a 4.5 cm AN when it was discovered via an MRI test.  My symptoms were rather severe, as you would expect.  Serious equilibrium problems, loss of the sense of taste (everything tasted like cardboard), Single Sided Deafness and acute fatigue.  The neurosurgeon I ended up hiring advised using a two step process to preserve the facial nerve.  He basically 'hollowed out' the tumor...it's usually termed 'debulking'. This reduces the size of the AN so that it can be radiated.  My neurosurgeon reduced my AN from 4.5 cm to about 2.5 cm.   I had a very successful surgical experience.  I had no facial paralysis and was driving again two weeks later. 

As planned, three months following my surgery I had FSR (Fractionated Stereotactic Radiotherapy) that was carefully 'plotted' by my neurosurgeon and a radiation oncologist he worked with on my case.  It is relatively small doses (5 gy daily) of precisely-aimed radiation that is supposed to kill the DNA of the remaining AN.  These 'treatments' were about 20-25 minutes each.  One per day, five days per week for 5 weeks (and one day).  I did not experience nausea - orany other problems, as long as you don't count boredom.  My last MRI (In December '07) showed tumor shrinkage and signs of necrosis (cell death).  Both doctor and patient are quite pleased.  I have another MRI scheduled for next month and I expect another encouraging report. 

As I mentioned, I had no real problems following my AN surgery.  Oh, my left eye gets a little 'dry' if I'm tired but a few OTC eye drops (or going to bed) fixes that.  I have a tiny 'numb' spot on the side of my tongue but it doesn't bother me.  Food tastes perfectly normal.  I think the left side of my face (the 'AN side') is perhaps 5% less sensitive than my right but, again, this is inconsequential.  Shaving isn't a problem.  Considering the size of my AN, I had a stunningly good outcome to both my retrosigmoid approach surgery as well as the follow-up radiation.   Of course, I'm still deaf in one ear, as I was prior to the surgery, but that was expected. 

As this thread demonstrates, Lisa, many AN surgical and/or radiation patients have good outcomes.  A lot depends on the skill and 'AN experience' of the doctors treating you, as well as the size and exact location of the AN.  Your overall health and attitude are also mitigating factors, as with any surgical procedure.  I was not young but in good overall health and had a positive attitude as well as a solid support system going in.  I believe these are crucial.  However, as we so often say around here: everyone is different.  No AN case (patient) is exactly alike.  The good outcomes of others cannot guarantee a good outcome for you, whether you choose surgery or radiation.   Still, I think you need to realize that having a successful surgical outcome is not a fluke but quite possible. I'm living proof of that.  :)

You also must remember that AN support groups and even message boards often are venting places for those with post-surgical (or radiation) problems.  Those folks need to vent.  They have every right to do so.  Here, we offer them empathy and as much support as we can.  The unfortunate reality is that these occasionally poignant accounts can frighten a newly-diagnosed AN patient into assuming surgery (or radiation) means facial paralysis or other distressing after-effects.  Please understand that this would be a misunderstanding of the reality.  A vast majority of our members have good or at least acceptable outcomes.  Also remember that most post-op issues do resolve, in time. 

Lisa, don't be hasty or allow fear to cloud your decision-making.  Have as many surgical consults as you feel you need and be sure to post any other questions you may have (not specifically medical...we're not doctors).  We stand ready to support and advise you as you may need - or ask.  Your AN is relatively small so you do have the luxury of time.  Use it well.  That said, I wish you all the best as you continue this 'journey to wellness' we're all on.   I think you're going to do just fine.  :)

Jim
« Last Edit: May 11, 2008, 03:02:27 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.

Debbi

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Re: Positive surgical outcomes??
« Reply #9 on: May 09, 2008, 02:08:08 pm »
I'll chime in, too - even though my surgery was barely a week ago and it is probably too soon to toot my own horn TOO much!  I'm 52, so not the younest surgical gal on this forum - that being said, I consider my surgical experience to have been nothing short of stellar!  I have virtually NO balance problems, no dizziness, no nausea - my only real complication is some temporary facial
numbness (palsy).  I had my stitches out today and the surgeon said he is already seeing signs of facial animation returning (small, but they're there), so feels very positive. 

Oh, and I am SSD in my right ear - this was guaranteed with my particular surgery, so not a surprise.  Too soon to tell if I'll want to pursue a BAHA or not.

Finally, the Doc said I can try driving locally this weekend!!!!  (10 days post surgery!)

So, yes, lots of very positive outcomes.  I have great role models from this site - you will, too!

Debbi - stitch-free in NJ...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

marymomof3

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Re: Positive surgical outcomes??
« Reply #10 on: May 10, 2008, 06:03:54 am »
Debbie - great to see you on the postie side!
Diagnosed Jan 21, 2008 w/1.8CM AN on left side.  Had is removed on March 19th at NYU.  And I am super grateful for such wonderful doctors!!

Kaybo

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Re: Positive surgical outcomes??
« Reply #11 on: May 10, 2008, 07:10:07 am »
Lisa~
I just have to say that I had quite a few complications when I had surgery but now that I am thru them (the immediate ones), I'm OK.  I had and I think still do have a great attitude (& my strong faith) and that is what helped me - overcome the problems then and then continue to live with a paralyzed face.  I have an INCREDIBLE life, a wonderful hubby, and 3 beautiful daughters (that I had AFTER my AN surgery).  What more could a girl ask for??  I think it is all in the way that you look at things...

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!

lori67

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Re: Positive surgical outcomes??
« Reply #12 on: May 10, 2008, 09:17:30 am »
I just knew that Kay would be able to shine a positive light on this!

I have to agree - while I have a few outcomes that may not be exactly positive (partial facial paralysis, SSD), I have to say that the most positive outcome I was hoping for was that I'd be here to compain about them!  And here I am!  But the way I see it, brain surgery is a big deal, so if you have some minor things to deal with, it seems like a small price to pay.

Don't get me wrong, I have my days where I don't want to deal with my surgical issues anymore, but they are few and far between these days.  I am beginning to think everyone should have brain surgery (or radiation) at some point - it really makes you appreciate what you have, instead of hurting for what you've lost.  Ok, maybe there is an easier way than having brain surgery to arrive at this conclusion, but I haven't figured it out yet.

Lisa, whatever treatment choice you decide on, I hope all of your outcomes are positive!

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.

km5

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Re: Positive surgical outcomes??
« Reply #13 on: May 16, 2008, 09:31:16 pm »
Is it just me, or have almost all of the "positive surgery outcomes" included either some loss of hearing, temporary facial paralysis, etc?  I find these "positive" reports pretty unsettling.

We have been doing research for about 2 months re our son's 4 mm AN, and reading about your, also very small, AN, I really hope you make sure that you research alternatives such as CK, GN, and "watch and wait."  I believe that surgery is warranted in many cases when the AN is 3+ cm, but the unpredictable results that seem uncorrolated to tumor size, weigh against the surgery alternative for us.  Good luck on your search, and I hope that you end up with a procedure with which you can feel very comfortable.

Katherine

leapyrtwins

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Re: Positive surgical outcomes??
« Reply #14 on: May 16, 2008, 11:34:33 pm »
Is it just me, or have almost all of the "positive surgery outcomes" included either some loss of hearing, temporary facial paralysis, etc?  I find these "positive" reports pretty unsettling.

In light of some of the possible surgical side-effects, these are positive.

Plus, life is what you make of it.  "Positive" is a very subjective term and can be interpreted differently by different people.

I, for one, find it very positive that I didn't have a life-threatening brain tumor and that I wasn't told I only had a few months to live.  There are people diagnosed every day with things much worse than an acoustic neuroma.  If I get to spend the next 50 years (God willing) with nothing more than SSD - I will consider myself truly blessed :)

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