Tumor Recurrence after surgery

[Nightsky]

Hello

3 years ago I had surgery for an acoustic neuroma. It was just under 2 centimeters. I had the "Middle Fossa" approach. 

Recently I had a follow up MRI and the radiologist's report says the tumor has come back, but  the surgeon says MAYBE it is scar tissue. Another MRI is scheduled for this summer, and the surgeon says he will be able to tell more after that study.

The first surgery left me deaf in the affected ear, with facial paralysis, severe dry eye, no blink, tinitus, permanent dizziness and memory problems.

My question to all of you is this:  has any one else out there had the AN come back, and what treatment did you choose? If anyone has been through this, would you please write and tell me about it?

I am really scared, because I cannot begin to imagine going through brain surgery again, and I cannot imagine the facial implications that might happen in addition to the obvious dangerous risks and trauma to my body.

Thank you.

NS

[Becky]

Night Sky,

I had translab 3/1/04 for a 1.4 cm imposter.  They removed 95% and gave me a 20% chance of regrowth several days after surgery.  For regrowth, they recommended GK.  I remember thinking, why did I just go thru this then?  I'm pretty sure the tumor is gone now, tho at only 1 yr post-op it is too soon to tell.

I also heard of people being opened in surgery only to find the nerve was swollen (imaged in the MRI) and there was no tumor!  So, before you become too concerned, make sure they know what they are reading in your scans.

Becky

[Mhicks26]

Hi,
My tumor was 4 cm I had microsurgery. There is a fine line on each of my MRI's  they also think it is scar tissue.  I have had 4 MRI's since my surgery and the line has not gotten any bigger.  Good luck
Michelle

[alwaysanonymous]

my surgery was 11/7/00 the AN was 5cm and i had the retrogismod and they got it all and 3 years after i had a follow up mri and they thought it might have been growing back so i had another one  a few months later and it turned out only to be a vaine so that goes to show an AN can easily be mistaken for a number of things

[jenifyer]

hi-

read my post in general discussion.

i am about to have brain surgery for the second time.

jennifer

[Kathleen_Mc]

Nightsky: i have a regrowth and am opting to have surgery again, it isn't medically required at this time but I want it done now while my children are too young to fully "get it". My neurologist told me post mri in 1997 that the mri was showing scar tissue but recommended a repeat mri in a year...I went ahead and had my first child and then the follow-up mri....then they tell me it's not scar tissue but tumor regrowth, in fact the report from before my son was concieved said this too...needless to say that doctor isn't mine anymore.
I am hoping after this next surgery I am finally through with "Tina" and can live the rest of life surgery free! Kathleen

[dpericoni]

A year ago I had my tumor removed. It was 5mm by 8mm. I was told it was all gone.

Yesterday, I received my year follow-up MRI results.

IMPRESSION:
Post surgical changes are seen involving the left internal auditory canal. There is fat-packing material superior to the canal. However, there is a persistent 5 x 3 mm area of enhancement within the fundal portion of the internal auditory canal distally and inferiorly. This is consistent with a residual tumor versus recurrent tumor. The study with and without contrast is otherwise unremarkable.

Now, I am waiting for my neurologist to look at the images.

Does anyone have any experience with these kind of results?

Darlene

[ppearl214]

Darleen, I know of some that had "debulk" of their AN's with residual... and then had the residual treated with radiosurgery (CK, FSR, etc). May be worth investigating.

Phyl

[MLB57]

Hi NightSky--I had a 1 cm rt AN removed Jan 2001 (retrosigmoid)--Surgical reports said it was totally removed but yr later MRI showed enhancement (thought to be scar tissue)--to make a long story short after yearly MRIs last JUne of 2006 it was determined that it is re-growing (size less than 1 cm) and that possibly some tumor had been left--well anyway I have done hrs of research and met w/2 neurosurgeons, 2 radiation specialists and scheduled to see one more at Mass Gen (Boston, MA) March 21 as radiation is my best option --(10% odds of repeat surgery  causing further trauma to facial nerve). At this March 21 meeting I will have all the info I need to determine if Gamma (one shot) or FSR (lower doses over several sessions) will  be best to preserve my facial nerve.

**You need to know: What are the odds that repeat surgery will further damage my facial nerve?...
**Would radiation better preserve my facial nerve?..
**Discuss concerns of developing malignancy (20-30 years in future)(rare but deadly)...

Believe me I am not thrilled with the idea of any treatment but I am thankful surgery isn't my only option. Check around this forum website and you'll find many discussions regarding our situation...

Take care for now--happy researching--the web is a wealth of info and also don't be afraid to get several opinions (see many specialists) before you make your decision!!   Mary from MA

[MLB57]

 ::)Hi Brucifer!! I've seen your posts --I am one of the NE Maxwell Brunch group--just met them all first time last Fall--we plan to meet again in April--Anyway you know one of my  MD's was adamant I don't have radiation (yet anyway) as he is concerned w/malignancy developing "20 or 30" years in future-I appreciated his concern--and I knew I'd run into one sooner or later who would be totallly against radiation... I certainly do appreciate reading your stats--it certainly puts this in the proper perspective for me.

Best wishes on you situation!!  Thanks again--Sincerely, Mary from MA

[pearchica]

Night Sky: keep reading through the website- I think others have been in the same shoes, ie; regrowth when in fact it is scar tissue ( or as I like to call it scare tissue)!  I'm sorry that you are experiencing this.  Please keep us updated on your progress- Annie