Another newbie...scared an confused

[am118]

Hey Folks,
I'm new to this so sorry if I ramble.  I'm a 50 year old family guy from Halifax Nova Scotia.
Had a recent MRI showing a 3.8 X 2.5 cm AN in my left ear.
Options are limited I guess with this kind of golf ball size AN.
Have about 40% hearing in left ear but will lose it all in left side if operate to remove.
I'm also concerned about paralysis in face.
I'm hoping the neurosurgeon and ENT specialist can figure this out when I'm under the knife so damage is minimized.
With this size, is radiation even an option?
Can it grow back?
Is surgery (brain) routine these days?
I'd also lose the bone behind my left ear.  Does that cause any major problems?
I'm still dealing with the news since I had vertigo and hearing problems for 8 years and my first ET specialist never sent me for an MRI.
Took the second one to order the MRI about 3 weeks ago.
Very frustrating.  Now that I have the MRI info, my options seem to be limited.
I'm more than a little scared and overwhelmed.
Any comments or advice?
Thanks for sharing your stories.
Cheers,
J.
 

[Jim Scott]

Hi, J ~

Sorry you were diagnosed with an acoustic neuroma but glad that you discovered the ANA website Discussion Forums.

I'll attempt to succinctly address your questions.

Avoiding facial paralysis as a result of AN removal surgery is always a concern.  My neurosurgeon opted to 'debulk' my 4.5 cm AN (peeling off layers) then use radiation to destroy the remaining tumor cells.  It was very effective.  So, there are options but that is a conversation you need to have with your doctor.

ANs can grow back after surgery and/or radiation but the re-growth rate is small, about 5%. 

Skull-based surgery is hardly routine but medical knowledge and new technologies have made it less riskier than it once was.

The Translabyrinth surgical procedure does guarantee hearing loss in the affected ear.. Retrosigmoid may save hearing but the odds are fairly small.  The Middle Fossa procedure has a good chance of preserving hearing but there are no guarantees.  These surgical approaches are determined by the size, configuration and placement of the AN and are the doctor's call, although you, as a patient, can always reject a doctor's decision and seek another physician.

Losing part of the mastoid bone is not a big problem.  I occasionally get an ache in that bone but one Ibuprofen tablet knocks it out.

My suggestion is to do your research and don't simply accept whatever a doctor tells you as your 'only option'.  Also realize that thousands of folks have undergone AN surgery and done just fine.  I'm one of them. 

Please try to keep us updated.  Thanks.

Jim

[Echo]

Hello and welcome from a fellow Canadian!

First off look into the Acoustic Neuroma Association of Canada and see if there is a branch in Halifax or elsewhere on the East Coast.  They will be able to give you details on who the neurosurgeons and otolaryngologists are in your area with the most experience dealing with AN's.  You have a large AN and will want the best advice you can get and you will want someone with lots of experience to assist you. 

DO NOT be afraid to request more than one consult.  Our medical system works quite differently to the US and we tend to go with whichever specialist we are sent to.  You can request and have more than one referral. You can also send your MRI to other Provinces for additional opinions and your provincial health care will cover the cost of treatments outside of your province. There are several neurosurgeons here in Toronto that are very experienced with AN's, there is also a Dr. Akagami in Vancouver who is extremely well known for operating on large AN's with good results.  I can put you in contact with two women from this forum who went from Ontario to BC for surgery with Dr. Akagami and both had good results.

Do as much research as you can prior to making your decision on who will treat your AN and where to have your treatment.  Don't hesitate to contact me directly if you want specific Dr. names in the Toronto area.

Hang in there, we are all here to help you through this.
Cathie.

[SDTom]

Hello,
I'm sorry you have to go thru this. I think you have got some very good advice from Jim and Cathie. Get as much info as you can and learn as much as you can. This is not an easy surgery but if you have an experienced Dr. it can be much better.

As far as facial problems - I am familiar with that. It is not as big a deal as I thought it would be prior to surgery. The Dr. attached my tongue nerve to my facial nerve. From a distance you can't even tell. When you get close you can see that I dont smile correctly and my eyebrow does not move. But it is not anywhere near as bad as I thought it would be.

You have a lot of people willing to help. Good luck.
Tom

[Sible]

Hi There,
I took the advice of friends on here and received additional consults. I'm in Ontario but flew to BC to consult  with Dr. Akagami. I've selected him and will by having surgery on my AN in September. Best of luck dont fret too much. I was diagnosed Dec. 2013 and you will know when you have found the one. Bank on experience, I feel like I hit the jackpot. Btw I'm 34, mom to 3 under 10 and a full time teacher. Its definitely a little scary, but its amazing how much surgery has changed even in the last 30 years.

Julie