Treatment after surgery for remainder of AN

[teacher]

My 3 cm AN was partially removed at the end of December.  A portion (5%) of the tumor remains due to dense adherence to the facial nerve, which has also become very splayed.  I will be having a 3-month follow-up MRI and consultation this week to learn the rate of growth of the remainder of my AN. Further treatment options will be discussed.   I am interested to hear from others who have had a similar experience in terms of partial removal of an AN.  Obviously, I would like to preserve facial nerve functioning to the highest degree possible.  We (Myself, family, surgeons) have all agreed that the sub-occipital surgery has been a success with minimal facial numbness and eye weakness.  I have lost hearing in the left ear and truly value my other ear now!  More than anything, staying positive and pushing yourself to take bigger steps every day is the key to a good recovery.

Thanks for your thoughts.

Cary

[Becky]

Hi Cary,
My 1.4 cm was removed via translab, with 5% left behind.  I was given a 20% chance of regrowth before I left the hospital.  I remember thinking -- why did I just go thru this then??  If it were to regrow, GK was recommended to me, but I was told it would not be a consideration until years down the road. 

I had an mri follow-up 4 months later, with no evidence of residual tumor, but too soon to be sure because of the large amt of fat packing the area.  Since then, they did 2 CT scans and another mri, still showing no residual tumor. 

You said, "More than anything, staying positive ... is the key to a good recovery" and I agree!  Sometimes its hard, but we can and we must

Sincerely,
Becky 

[jcinma]

Hi Cary,
I had sub-occipital Feb. 9 for a recurring AN that grew to 3.2 cm.  The re-growth occurred in just 6 years.
They left apprx. 20% to preserve the facial nerve and like you I have a dry eye and very minor facial weakness.  I have decided to have FSR to minimize the risk of damage to the facial nerve.  I am going to have it done at Mass General in Boston.  I am starting the beginning of April as I am concerned about the rate of growth of the residual tumor. So far I have been feeling great with no headaches what so ever, the dry eye at the end of the day is a little sore but I am not complaining.  I am having physical therapy to keep my neck limber and vestibular therapy to get my left eye moving in conjuction with my right (there is some minor weakness) Stay with the positive attitude, it does make all the difference!
Jane

[Becky]

Jane,
Do I understand correctly that you had 2 surgeries for the same AN and will soon have FSR as a 3rd treatment?  The 2nd surgery was sub-occipital; what was the 1st?  How in the world did it get so big if you were receiving yearly mri's?  Was there a particular period of time when it went into a "growth spurt"?  What stats have you received regarding FSR results?  I have read that many GK centers won't treat AN's larger than 3 cm.  Is there a ballpark size limitation for FSR?  Did you have the 2nd surgery in Boston, also?

How wonderful that so soon after your 2nd surgery you're feeling well!  Good for you!  I certainly wish you all the best with (hopefully) your final treatment of this imposter 

Best of luck to you, Jane!

Becky

[jcinma]

Becky,
My first AN was removed in Nov. 1996 sub-occipital. It was 1cm and post op report stated total removal. A follow up MRI one and a half year later showed no reccurence. I never had yearly MRIs done because back then it was not the protocol. I was told one year and then five years. Unfortunately I was lax with the 5 year.  I had another MRI done in Sept. 2004 because I was experiencing facial numbness. Lo and behold there was a reccurence. In just 6 years the tumor grew to 3cm. The second surgery removed all but 20%. I just had a follow up MRI but do not have the results just yet to give the exact size of what remains. I am very concerned about post treatment swelling with GK and my facial nerve. I met with DR.s that do both and feel more comfortable with the FSR. Thank you for your good wishes, I hope you are doing better too.
Jane

[Retired Dad]

Cary,
 Ã‚  My 32 year old daughter had a "sub-total" removal via sub-occiptal last April 16, 2004, leaving about 6mm of a 2.2cm, basically for the same reasons as yours.  The portion remains on the "facial nerve" with no damage to face, eye lid, etc.  She had normal after operation actions in mouth, etc.  Periodically she metallic taste, of course is SSDeafness on tumor side.  Overall she is in excellent condition and spirits are high.  This was done at MassGeneral Hospital (MGH), Boston.
 Ã‚  She had a 6 week MRI to "baseline" the size remaining in order to comfirm Doctor's operation mesurements.   She also had about a 6 month to monitor condition for regrowth, with yearly MRIs to maintain surveillance on the remaining tumor.  Decision to leave some and not cut/graft the facial nerve was both patient/doctor(s) agreement prior to surgery, and to be followed out if tumor displayed problems at time of sugrery.
 Ã‚  Empasis "good" MRI protocol for the surveillance program.  That is patient needs to make sure they are getting the best shots available at the best resolution, etc.  Try to always get copies of your own MRIs for you files/comparisons.  Try to get a Brain Radiologist to always read your MRIs.  Don't let them produce films that are not repersentative of the remaining tumor, make sure they can see it, measure it, and watch it,etc.
 Ã‚                Thanks,  Paul A. Bergeron