Author Topic: What is the percentage of Acoustic Neuroma regrowth?  (Read 7770 times)

kareno

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What is the percentage of Acoustic Neuroma regrowth?
« on: March 11, 2011, 09:27:46 am »
On Monday March 14th my husband will have his first year MRI.  He is doing very well besides SSD, Tinnitus, and tiredness.  He had minimal headaches but recently complained of a few mild headaches in the back of his head which I thought was different.  Does anyone know the chances of a possible AN regrowth.  My husband had surgery with Dr. Heilman Tufts and the entire 3cm tumor was removed.  He did very well after surgery no complications besides an allergic reaction to steroids and was back working full-time within 4-5 weeks.

I have been following this forum for a year and it has helped me tremendously.  Thank you everyone!!

Karen
Caregiver:  Husband 3.0cm diagnosed 1/10, Retrosigmoid Surgery 4/10 Tufts Medical CTR Boston, Dr. Carl Heilman-Exceptional Surgeon

CHD63

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Re: What is the percentage of Acoustic Neuroma regrowth?
« Reply #1 on: March 11, 2011, 01:36:20 pm »
Cannot seem to find the referenced article, but as I recall the regrowth possibility after surgery is only a 5 to 9% chance and most frequently following retrosigmoid (suboccipital) approach.  The stats for knowingly leaving some of the tumor would be different.  And, of course, different stats for people after radiation treatment.

Did he have an MRI at six months?  If so, was it completely clean?  If not or he did not have one at six months, you will know on Monday's MRI whether there are any areas of post-op changes or recurrence to watch.

Keep in mind that headaches can be caused from many things besides an AN.  Oh, how easy it is for me to jump to any new symptom as being related to the AN!  Some are, of course, but some are not.  Try to relax until you have the report from this MRI.

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

leapyrtwins

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Re: What is the percentage of Acoustic Neuroma regrowth?
« Reply #2 on: March 11, 2011, 04:29:27 pm »
I had my AN (almost 3 cms) removed via the retrosigmoid approach almost 4 years ago.

I was told by my neurotologist that my chances of regrowth are approximately 1-2% since as far as he and my neurosurgeon could tell they removed 100% of the tumor.

I say "as far as they could tell" because surgeons do their best, but even one cell left behind has the potential of regrowth.

Sometimes sh*t happens.

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

Tumbleweed

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Re: What is the percentage of Acoustic Neuroma regrowth?
« Reply #3 on: March 13, 2011, 11:03:02 pm »
What I've been told by AN specialists who practice microsurgery and radiosurgery is that the chance of recurrence is about the same with either type of treatment: 2%. The odds are overwhelmingly in his favor that he is done with this tumor for life.

Best wishes,
TW
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

kareno

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Re: What is the percentage of Acoustic Neuroma regrowth?
« Reply #4 on: March 16, 2011, 09:21:47 am »


Good News!!  There was NOT any sign of tumor regrowth on the MRI.  The Neurosurgeon said that it is a 1% chance for the AN to return.  He will have another MRI in 4 years.    Thank you to ALL of you on the Forum!!!
Caregiver:  Husband 3.0cm diagnosed 1/10, Retrosigmoid Surgery 4/10 Tufts Medical CTR Boston, Dr. Carl Heilman-Exceptional Surgeon

leapyrtwins

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Re: What is the percentage of Acoustic Neuroma regrowth?
« Reply #5 on: March 22, 2011, 11:26:00 pm »
So glad his MRI was "clean".  YEAH!!  ;D

Thanks for letting us know!

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

extropy

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Re: What is the percentage of Acoustic Neuroma regrowth?
« Reply #6 on: July 02, 2018, 02:17:40 am »
Unfortunately the percentage of regrowth vs. time (years) is high in case of near-total resection, very high in case of sub-total resection, very very high in case of partial resection. Much less in case of gross-total resection.

http://thejns.org/doi/abs/10.3171/2010.11.JNS101041

http://thejns.org/doi/abs/10.3171/2016.11.JNS16498
https://pbs.twimg.com/media/DAg5XL0XoAAbKC4.jpg
« Last Edit: July 02, 2018, 04:08:37 am by extropy »
2014 - at age 65 problems with left ear (tinnitus, imbalances, deafness, short-memory problems, etc).
2014 - MR found VS, 3.5 cm circa.
2014 - Exeresis, in Rome, RS approach,  followed by hydrocephalus ... and shunt.
2018 - AN has regrown, volume is 2.6 cm3.
2018 - GK (Humanitas, Milan)

Patti

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Re: What is the percentage of Acoustic Neuroma regrowth?
« Reply #7 on: July 02, 2018, 08:18:49 am »
mine grew back. i had it treated with stereotactic radiosurgery 2 1/2 years ago and it has stopped growing but it hasn't shrunk.
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

extropy

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Re: What is the percentage of Acoustic Neuroma regrowth?
« Reply #8 on: July 02, 2018, 09:56:33 am »
we need pharmacology, not surgery or radiosurgery. regrowth is a huge problem.
2014 - at age 65 problems with left ear (tinnitus, imbalances, deafness, short-memory problems, etc).
2014 - MR found VS, 3.5 cm circa.
2014 - Exeresis, in Rome, RS approach,  followed by hydrocephalus ... and shunt.
2018 - AN has regrown, volume is 2.6 cm3.
2018 - GK (Humanitas, Milan)

ColleenS

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Re: What is the percentage of Acoustic Neuroma regrowth?
« Reply #9 on: November 11, 2018, 09:21:24 am »
Mine grew back as well - just 1% was left on my facial nerve. 15 months later it was almost to the original size. A month ago I was treated with SRS - waiting to see if this worked.
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14 & sprung on 5/15
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness

Crazycat

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Re: What is the percentage of Acoustic Neuroma regrowth?
« Reply #10 on: November 14, 2018, 11:58:59 pm »
Yeah, mine is growing back as well. It took a while though. It was not fully removed. They could only debulk the thing by about half, it was so huge—the size of an egg. The surgery was in '05. So it's been 13 years. Last year's MRI showed that it had regrown 2 millimeters. And to think I thought I was getting away with it (no regrowth).

Just had this year's MRI last week (my 14th MRI) and will be getting the results this afternoon at my G.P. follow-up.

To complicate matters, I also have what is referred to as "overshunting", where too much CSF is being drained from my head.
This results in expanding brain tissue, billowing out against the skull. How far this is going to go or what complications may arise I have no idea; all I know is that there is nothing that can be done about it. I am now afflicted with weird headaches that are especially bad in low barometric pressure. They tend to go away when I lay down.

So far, I have adjusted to a new normal: constant double vision, slight facial numbness, quivering facial tissue, high-pitched, shrill tinnitus, total left-side deafness, impaired handwriting, impaired equilibrium and frayed nerves.

This thing really screwed my life up, not that it was anything to brag about in the first place. So maybe it's a blessing in disguise? Who knows? And I am/was a musician. The Lord moves in mysterious ways.

 13 years ago my doctor told me that stereotactic radiosurgery would be the next step in the event of regrowth.
Somehow the notion of frying what's left of my brain tissue with radiation scares the hell out of me, especially what the long term side-effects may bring.

I'll update you on the MRI results.
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

ANSydney

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Re: What is the percentage of Acoustic Neuroma regrowth?
« Reply #11 on: November 15, 2018, 12:29:42 am »
Crazycat, Good luck with your MRI results. The previous 2 mm growth is within the measurement error for these tumors.

Crazycat

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Re: What is the percentage of Acoustic Neuroma regrowth?
« Reply #12 on: November 15, 2018, 01:22:19 am »
Thanks Syd!

  What exactly is meant by "within measurement error"?
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Patti

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Re: What is the percentage of Acoustic Neuroma regrowth?
« Reply #13 on: November 15, 2018, 06:48:07 am »
Oh my! Crazycat please keep us posted. It must be so hard on you.  Patti
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

Crazycat

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Re: What is the percentage of Acoustic Neuroma regrowth?
« Reply #14 on: November 15, 2018, 07:17:02 am »
I will Patti.....and thank you!
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

 


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