Tumor Recurrence. (also posted in Post-Op category)

[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

[centimeter]

NS;
  It is common to follow surgery with radiation.
  Mid-fossa is the trickiest of procedures so I am wondering where you had this done. The facial nerve lies right on top after the IAC is entered from the top and the surgeon has to work around it, so, tis a bit tricky.
  I do hope this turns out to be scar tissue or whatever they used to affect tamponade ( either fat or muscle ) to close the wound.

 C

[jenifyer]

hello. 

i had surgery 5 years ago via middle fossa to remove a 1cm AN.  The hearing in my right ear is gone and i do have residual facial paralysis, dry eye etc.  I had a follow up MRI 1 year after my surgery that the doctor said showed post op changes. The tumor was replaced with muscle flap which has a blood source and therefore lights up on the MRI. Fat does not light up as it does not have a blood source.

TO make a long story short....it wasn't muscle flap. I now have a recurrent AN 2.5 cm that i am planning on having removed translab.  I have different doctors and am at a different facility and am hoping i will not have further facial nerve damage.  i have to consider hypoglossal nerve grafting this time because i already have a weak facial nerve.

I chose not to have radiosurgery for my own reasons.  for many people it is the right choice but i wanted the WHOLE tumor out.  No small bits left or anything. 

i am a younger person, only 33 and am afraid i will have to live with this the rest of my life, however the good news is that these are benign tumors and everytime i hear about someone who is not as lucky as me,  i thank God for that.

Please feel free to email me. i know how you are feeling.  after the initial shock and devastation that i will have to face this once again 
i have accepted my decision and will just go forward. 
jennifer

[krail]

I too have a recurring AN.  In 1997, I had a 3.5cm AN removed.  For the past 8 years, I have not worried about it.  Yesterday my neurologist told me he thought it was back.  I don't recall if he told me the size or not, I guess I was in shock to hear anything.  He gave me 3 options:  1. Do nothing now and monitor it to see if it continues to grow.  2.  Go in and remove it. 3.  Use Gamma knife to try to control/shrink it.  I chose Gamma knife.  My surgeries, yes surgeries, to remove it the first time totaled 30 hours.  I do not want to go through that hell again.  I realize there is a chance that the tumor may continue to grow even after Gamma knife.  Did I make the right decision...I don't know...I'm worried...any ideas?

[jcinma]

I had retrosigmoid surgery to remove a 1cm. AN in 1996.  In Sept.2004 I was diagnosed with a recurring AN that had grown to 3cm. I had an MRI about a year and a half after first surgery and showed no signs of reccurrence. I had retrosigmoid again in Feb 2005. Absolutely no pain (the first recovery had lots of headaches) minor weakness that is all gone. I opted for debulking followed up with FSR.  The tumor had adhered it self to the facial nerve and total removal would have most certainly meant facial paralysis.  I was terrified about the second surgery as the first was so difficult, but I am amazed that I have done so well (so is my surgeon). Won't know the results of the FSR for a while, will be having MRIs every 6 months for a while. I feel very comfortabel with the decision I made a just hope the FSR arrests the growth of what was left.

[Kathleen_Mc]

Hello: I am also in this terrible boat. In 1990 I had surgery to remove my a.n. and to make a long story short in 1998 I found out what I had been told was scar tissue showing on my m.r.i. was indeed tumor regrowth. Since that time I have been in the watch and see group...I can't take it psychologically anymore and now that I have finished having children and they are at an age my husband can handle alone for a period I am going to have surgery. It is not medically necessary to have this surgery but it is my choice. I am a Canadian and the anac site is great but I've yet to find anyone else with regrowth to chat with. I have research gamma and linac and prefer to have surgery...I don't like the unknown of these preceedures whereas with surgery I know exactly what I'm getting into, I just hope with the tumor being much smaller it will be a little easier (I don't know measurements but 1st time around the surgery was 15 hours and this time they predict 3-4 hours) and with the 1st o.r. I lost the 7th-10th nerves inclusive so I don't have to adjust in balance change,loss of hearing, swallowing etc. Any thoughts? Think I'm crazy? Kathleen 

[jenifyer]

hello Kathleen,

I don't think you are crazy!!  I had surgery on May 5th to remove my recurrent AN.  The surgery went even better than i could have imagined.  My doctor did say that it was very difficult because of the way the tumor had regrown around my facial nerve but he did manage to save the nerve. I am now almost 2 months post op and i am doing great. i am glad i had the surgery again.  If you have any questions don't hesitate to email me!
jennifer