Looking for feedback!

[MKS]

Hi!

I have a few questions.  Early last year, my 25 year old fiancée was diagnosed with a 4mm X 8mm X 4mm AN.  The doctor suggested that they wait and observe it for six months.  Since then, he has gotten two more MRI’s and his latest one showed the AN at 1.2cm X 8mm X 6mm.  The AN was previously entirely inter-canalicular but the current exam says that there is a slight extension of this mass through the porous accustics into the left cerebella pontine angle cistern.  Can anyone help me understand what this means?? 

Since the AN is growing, we have been trying to learn about CK as compared to GK and neurosurgery.  We are leaning toward CK but realize that we need to do a lot more research.  The fiancée is having a hard time reaching his doctor and we are looking for a new doctor who will be more active in deciding what the best method to treat this AN would be. 

Thank you for all your help.  This message board is very informative and helpful!

[Battyp]

Hi Mks,
  My an was 2.8Cm and involved exactly what you said.  My brain stem was involved which is when things get very sticky!  What symptoms is your fiance having?  radiation therapy can only be done in under 2.5 cm tumors otherwise it's surgery.  This is a great site to get info!  They also have some very good literature they'll send you.
  Where do you live?  Everyone here raves about the House in LA and I've read where you can send them a copy of your mri and they'll do a consult.  Clevland Clinic is suppose to be one of the best too.  I'm in Fl and went with Moffitt in Tampa. 
  I wish you guys the best!  Keep asking questions until you feel comfortable with what you're being told!

michelle

[MKS]

Michelle -

Thank you for your response.  The symptoms that he's having is ringing in his right ear (more of an eeeeeee sound), some dizzy spells (not very often) and that's it.  We are currently in Mississippi but are moving back to Chicago this summer. 

If you don't mind me asking, did you have neurosurgery?  How long ago did you have it, and how are things going for you post-op?

Thank you again!

[shoegirl]

Michelle,

I just had CK in December for my AN at The Barrow's Institute in Phoenix, AZ.  The staff was wonderful.  They have an Acoustic Neuroma coordinator - her name is Maggie Varland.  Her phone number is on their website.  They do surgery, GK, other forms of radiation in addition to CK.  One thing I liked about Barrow's is that they have all the options available to treat AN and they have you meet with a Neuro-ENT, Neurosurgeon, and Radiation Oncologist.  Each of them gives you options, explains each treatment, they all meet to discuss your case and each one has their own recommendation.

Standford and UPMC (Pittburgh) are also highly regarded for the treatments with CK and GK.  Depending on where you live there are lots of great centers all over the country.

Ask lots of question,  make sure you do lots of research and then ask more questions.  I would be more than happy to talk to you if you have any questions. 

Best Wishes, Suzanne

[Boppie]

What I read...The tumor in the inner ear canal (IAC) is now slighltly extending into the triangular (pontine angle) skull area of the brain.  At this point the report does not say that the tumor is up against or "on" the brain (brainstem).  

As the tumor in the IAC enlarges grows it can advance along the nerve and eventually into the brain space.  

But you should get a translation of the report and explanation from a doctor. Tell the doctor you want to see your own MRI.  If you can tolerate seeing your MRI, you can zero in on that invader and perhaps feel more in pursuit of it.

My MRI report said "approaching the brain stem".  I took this to mean not on the brain yet.  These were the gentle words the ENT gave me also.  But the Neurologist said, by looking at the actual MRI with me, "Oh yes, it is touching the brain stem".  A neurontologist will be very definitive.  He will present all of the facts and answer all of your questions.

On this Forum, I have read of some successful outcomes for ANs in Chicago.

The best of luck in your decision making.

[jamie]

Hi Mks,
  My an was 2.8Cm and involved exactly what you said.  My brain stem was involved which is when things get very sticky!  What symptoms is your fiance having?  radiation therapy can only be done in under 2.5 cm tumors otherwise it's surgery.  This is a great site to get info!  They also have some very good literature they'll send you.
  Where do you live?  Everyone here raves about the House in LA and I've read where you can send them a copy of your mri and they'll do a consult.  Clevland Clinic is suppose to be one of the best too.  I'm in Fl and went with Moffitt in Tampa. 
  I wish you guys the best!  Keep asking questions until you feel comfortable with what you're being told!

michelle

The information in this post regarding radiosurgery is incorrect. The ceiling for gamma knife is about 3 cm, however Cyberknife has been successfully used to treat even larger tumors.  

Check out www.cyberknifesupport.org there are doctors on that board that will answer any questions you may have in the discussion forum.

[SKT]

Mks, my understanding is that if your tumour is not compressing on the brain stem, then generally speaking, you have alot more options.  When mine was diagnosed (3.3cm)  it was compressing on the brain stem significantly, and every ENT & neurosurgeon I sought advice from informed that radiosurgery simply wasn't an option because of its location.  My tumor had started growing on the very outer part of the acoustic area and had started compressing the brain stem very early on.

Every case is different - it's not just about size but also location.  Sounds like yours is small and hopefully well away from the brain. Seems like you've caught it at a 'good stage' where you have a number of options and less risks.

I wish you all the very best.

[SuzeAN]

Hi,
I was diagnosed with a 2.5cm AN slightly compressing on the brainstem.  I researched both microsurgery and CK and GK; after having my MRI's reviewed by the doctors at Barrows I chose CK.  I had that done in Oct and I am feeling great so far.  I think it best to be seen by doctors that offer both options therefore your will get a fair assessment.

Good luck, Suze

[stein78]

We are currently in Mississippi but are moving back to Chicago this summer. 

If you are headed to the Chicago area, give Dr. John Leonetti a call.  He works out of Loyola University Medical Center.  I had my 2.5cm AN removed there last May and I am doing great.  Best of luck!

[ruth in Michigan]

That sounds like a pretty dramatic growth for a slow growing tumor..... I was fortunate enough to be able to go to Los Angeles (House Clinic) for a 1.6cm tumor which was successfully removed with no facial paralysis.... I did loose hearing but I forget I even had surgery most days..... I had Dr. J. Fayad as my surgeon, very caring.... If you call the House Clinic they will put you in contact with one of the surgeons who will look at the MRI's and give you an opinion, and explain the options.... I was able to change my insurance from a managed care to a plan that would allow me to travel there..... it was worth the trip... I feel great.... Good luck to you, have this thing removed and forget about and go on living.....

[Battyp]

Interesting thread I'm just getting back to it.

Jamie where were you when I had three doctors tell me otherwise?  I think I would have gone for that option instead of surgery!

Boppie I did look at mri's.  I have copies on my computer  lol  My brain stem was being displaced to the right and is it is stated on my mri that it seems to indent the left pons and mildly indent the 4th ventricle.. (what ever all that means  lol) It also stated it was mostly extracanicular...then why did I lose my hearing?  lol 

I so wish I would have had the time to find this site before my surgery I def. would have raised a lot more questions than I did at all my consults.  I just felt so bad I wanted it fixed.