Update

[tatianne]

Hi all
I went to my neurotologist yesterday and the results of my hearing test were in, my hearing is unchanged since the last test, which I guess is good news.
For those who didnt see my last post my AN grew in a six month period. In July it measured 8 x 3.2 x 3.3 mm and in january 9.5 x 4.2 x 3.6 mm.
Once again the report indicated that it is "abutting the porus acusticus" (whatever that means) but there is no extension into the cerebellopontine angle(no sure what that is either)It says there is an extension into the geniculate ganglion (whats that ??).More mass affect is noted on the 7th nerve within the IAC. (facial nerve, right ??)Touches a bit the 8th but not the 5th or 6th.
The other IAC is unremarkable...normal i guess ??

IMPRESSION: Mild interval increase in size of the known right IAC vestibular shwannoma which currently measures 9.5 x 4.2 x 3.6 mm, with no new extension of the mass. The remainder is unchanged.

It grew about 1.5 mm in six months, my neurotologist said that is a little fast and thinks its time to move forward with a treatment so im seeing a neuro next thursday. He feels the neuro will encourage towrds GK but may decide to continue to observe and even may suggest surgery.

Im feeling GK, but I have a thought that maybe i should wait a little longer.
All sugestions or input based on the info I have given would be greatly appreciated.
Im really anxious about this the past few weeks, I was OK for quite a while but Im really scared right now.
Thanks guys and girls.
Tatianne
(by the way, im in canada and we have very few GK machines, I may have to go to rhde island, anyone have any info on GK in rhode island ??)

[Derek]

Hi tatianne...

The rate of growth of your AN appears 'average' at 1 to 2 mm per year. The present size (subject to regular MRI scans and acting upon professional medical advice) would suggest that if there has been no escalation of symptoms, you could continue with the 'wait and watch' procedure. I am now into my 6th year since diagnosis and at 2cm I still prefer to maintain the 'wait and watch' option pending GK  as my ultimate treatment option when it is decreed that intervention has become necessary.

You may find the medical website at www.emedicine.com/ent/topic239.htm a useful source of information re the explanation of medical jargon relevant to acoustic neuromas. Being UK based I am unable to assist with info re AN treatment facilities in Rhode Island.

Best regards.

Derek

[tatianne]

thanks for your response derek.

How big was your AN at diagnosis if you dont mind me asking.

I thought 1-2mm was over a year, I had 1.5 mm in six months....could be average...does anyone know if the growth pattern stays consistent or could it fluctuate ???My guess is it most likely depends on the patient.

[ppearl214]

Hi tatianne,

Derek is correct in noting that AN's, on average, may grow approx 1-2mm/year.... also, please keep in mind that MRI's AN reads run a +/- error of 2mm as well... so based on what the report says, sounds to me like little to no growth as you fall into that range as well. Each MRI machine is different and have to agree with Derek that it may be worth continuing to monitor unless symptoms enhance... just my thought.

Hang in there! 
Phyl

[krbonner]

Tatianne,

I know you're worried.  Who wouldn't be? 

Just as a point of comparison, my AN was classified as fast growing - it went from 1.6cm to 2.2cm in 12 months.  But even with the size and growth rate, no one was rushed to do anything immediately.  It was almost 6 months from the time we decided that I needed to go ahead with surgery until I actually went under the knife.  I guess all I'm trying to say is that even if your AN is growing (and Phyl is right about the margin of error - I don't know how anyone can be accurate to the tenth of a millimeter!), you still have time to figure this all out and come to terms with it. 

As for some of the other stuff:
- "no extension into the cerebellopontine angle" means that the AN isn't protruding out of the inner ear canal.
- "The other IAC is unremarkable" means the other side is perfectly normal
- "abutting the porus acusticus" means the AN is just starting to butt up against the porus acustucus, which is a channel in the bone where the nerves pass through (I googled that one)

There is a big GK center in Providence, RI.  It's run by Dr. Georg Noren, who has a lot of experience with ANs.  I beleive several people here have been treated by him.

Katie

[Derek]

thanks for your response derek.

How big was your AN at diagnosis if you dont mind me asking.

I thought 1-2mm was over a year, I had 1.5 mm in six months....could be average...does anyone know if the growth pattern stays consistent or could it fluctuate ???My guess is it most likely depends on the patient.

Hi again tatianne...


My AN was assessed at about 1.6cm upon diagnosis so only about 4mm in 5 years but of course this can vary. There might be be no growth, minimal  (average) growth or sudden spurt growth...just a question of luck I guess and Phyl is absolutely correct re the aspect of margin of error relevant to MRI scans so take it easy at this stage and monitor the situation.

 I am presently acting upon good advice from Dr Medbery over on the Cyberknife Patient Support Group 'site at www.cyberknifesupport.org/about_the_doctors.html (then access the 'message board' to ask a question) who has advised that I can safely continue 'wait and watch' but to 'get in quick' for treatment should there be any escalation of symptoms.

Regards

Derek

[PatientNo14]

Tatianne,

There is a Gamma Knife in Sherbrooke (Québec). You can find a lot of info here...
http://www.anac.ca/phpBB/viewtopic.php?t=341

Here is a video about GK in Sherbrooke...
http://www.radio-canada.ca/util/zapmedia/version10/frame.asp?menuFlash=&directLink=/Medianet/CBFT/Decouverte200410101830_1.asx&promo=&duree=

Some statistics and expectations from Hôpital Fleurimont...
http://chus.qc.ca/fr/actualites/downloads/comm_gammaknife_bilan2ans_29sept06.pdf

Toronto and Winnipeg also have GK. I don't think you have to go south of the border.
http://www.elekta.com/healthcare_us_treatment_centres_canada.php

If you want a second opinion, you should consider Dr Issam Saliba neurotologist at Hôtel-Dieu...
http://www.chumtl.qc.ca/services-soins/recherche-soins/liste-soins/soins-liste-jo/soins-clhd-orl.fr.html

Here is a testimony of a patient of Dr Saliba...
http://www.anac.ca/phpBB/profile.php?mode=viewprofile&u=1000&sid=6d1c360cad8f615865c68955210b7749

Some food have the power to reduce tumors growth. You should  read the book "Food against cancer" from Dr Richard Béliveau.
Cancers and tumors hate garlic, green tea...
http://www.tc-cancer.com/forum/showpost.php?p=26738&postcount=21
http://www.yumiya.ca/Bienfaitssante.html

With a 18 mm vestibular schwannoma, I am scheduled to have surgery with Dr Saliba probably in May.

[tatianne]

thanks all

Bruce, please be sure to let me know what happens with your MRI...Im really interested.
My Neuro appointment is on Thursday, I will definitly let you all know what his perspective is.

[Battyp]

tatianne,
  I'm curious, did you have your mri done at the same facility and was it read by the same radiologist? From what I experienced and have read the growth rate can vary.  I'm sure if I'm wrong on this someone will correct me  Like Phyl said there is a margin of reading error so I do not think I would stress too much over the growth you have experienced in the last 6 mos.  I would still seek medical advice. Your an is still on the small side.  Let us know how your appoitment goes!  Remember deep breath!