Another Newbie here

[char1957]

Was diagnosed with acoustic neuroma on the day of my MRI on Dec 10. (mass in the internal auditory canal on the right which extends centrally into the cerebellopontine angel.  It measures 1.5 cm in the cerebellopontine angle and measures 2.1 in coronal dimension.) Contacted Shands and radiosurgery with Dr. William Friedman was scheduled on Jan 4 and 5.  Had a new MRI and met with Dr Friedman and his team on the 4Th.  He told me I was not a candidate for Radiosurgery and that he thought it would make me worse.  (I have been having symptoms for 3 years and all the doctors I have seen have put me on antidepressants.) Dr. Friedman graciously referred me to Dr. Stephen Lewis who was able to see me the next morning.  I am scheduled for surgery on February 8Th, and today is one of my scary days.  I try very hard to take it "one day at a time", but some days like today, I am terrified. 

Anyone out there know of Dr. Lewis?  I believe he is doing the retrosigmoid approach.  My hearing is annoying, my face is a mess, my balance is "not so pretty" and my memory is scary!  Am I doing the right thing here?  Any advise at all would be greatly appreciated. 

Hope I am posting in the correct place??
Char

[leapyrtwins]

Welcome, Char  

The category you posted in is just fine.

I'm curious as to why you were told radiation wouldn't be an option for you.  The size of your AN is within the limits that are generally set for radiation.  Is the location of your AN the issue?

Deb (ghenier27) and Lyn (lawmama) both had surgery recently with Drs. Antonelli & Lewis.  And both are doing well.

I had retrosigmoid, but not with Dr. Lewis, and aside from being SSD (single-sided deaf) I'm fine.  Recovery takes a little time and patience is key, but there is life after an acoustic neuroma.

I can't give you any advice on treatment other than to say, do what is best for you.  AN treament decisions are very tough decisions, but it's vital that you make your own choice and do what is right to YOU.  Just because I chose surgery doesn't mean it's for everyone.  Those who choose radiation are happy with their choice also.

It's scary having an Acoustic Neuroma, but you'll get through this.  We're here to help in any way we can.  

Best,

Jan

[char1957]

Thanks for your reply Jan,
The way I understood Dr. Friedman about not being a candidate for radiosurgery was.....  In taking 3 years to get a diagnosis, I now have to many deficits.  He seemed appalled that it took so long to get a diagnosis with all the symptoms I am having.  I guess with radiosurgery, it just stops the tumor from growing, it won't undo the symptoms I already have??  Hope I got that right!  Dr. Lewis told me that surgery should undo most of my problems.  Sure hope he is right! 

[lawmama]

Hi Char,

Dr. Lewis and Dr. Antonelli did my surgery (retrosigmoid) on December 14th, 2009 at Shands.  I think I have had excellent results, although, of course, results can vary from person to person. I found Dr. Lewis to be very caring and easy to talk to and my overall experience at Shands was very positive.  I will PM you in case you want to ask me any specific questions.

Lyn

[char1957]

That would be great Lyn!  Thank you so much!

[leapyrtwins]

Char -

thanks for the explanation.  I have no doubt that what Dr. Friedman told you is correct.  Afterall, he's a doctor, and I'm not 

It's probably not much of a consolation, but lots of AN patients go undiagnosed - or misdiagnosed - for years.  I'm just thankful - as I'm sure you are - that you ultimately received an accurate diagnosis.

You are correct, the goal of radiation is to stop ANs from growing (they basically die - it's called necrosis) but I'm not sure if radiation will or will not "undo" the symptoms you already have.  I do know that radiation can cause an AN to swell which can lead to new symptoms (like increased hearing loss) that go away once the swelling subsides.

I know more about surgery than I do about radiation, so I'll leave that set of questions to someone who had radiation. 

Jan 

[Omaschwannoma]

Char,

I too had surgery with Lewis and Antonelli in 2005 (Jan, you left me out  ).  I know you are in excellent hands with both doctors and highly recommend Shands.  If you feel you need more opinions please feel free to contact me.  Dr. Friedman is giving you good advice and would not recommend another form of treatment if it were not necessary.  I had facial and balance issues going on when I talked with Dr. Friedman and he told me these would most likely not resolve, so I chose surgery based on my on-going symptoms and do not regret my decision. 

[leapyrtwins]

Char,

I too had surgery with Lewis and Antonelli in 2005 (Jan, you left me out  ).  

Oops!  Sorry, Arushi.  I did a quick search on Dr. Stephen Lewis and came up with Deb and Lyn.

I'm sure there are others on the Forum who went to Antonelli & Lewis (Shands) also.

Jan

[char1957]

You guys ROCK!  Thanks so much for your replies.  It has helped me so much to hear from others who have "walked in my shoes".  I am already feeling more confident about my upcoming surgery!
Char

[Jim Scott]

Hi, Char - and welcome.

I'm sorry you have an acoustic neuroma but pleased that you found the ANA website and, more importantly, that you're on track for surgery next month.

Being terrified is almost a requirement for pre-surgical AN patients but you'll get through this and, we trust, be in better shape when it's over.  We do know what you're going through and we'll support you all the way.

Jim

[lawmama]

Char,

So glad to hear you are feeling better about things.  This surgery is certainly not a cake walk, but you are in experienced hands and you will be ok.  You will be in my thoughts and prayers over the next few weeks.

Lyn 

[jaylogs]

Char, I can emphasize with you on the scary thing...Just know that we are here for you and you are in my thoughts as you go through this...please continue to vent or if you have any more questions...that's what this place is for!  Take care!
Jay

[sues1953]

Hi Char,

I was diagnosed on Dec.4th I had never heard of " acoustic neuroma" before then.  I can certainly relate to you and your situation.  From what i understand your AN is similar to mine.    I pulled out the findings of my MRI and it says "lesion extending into the right internal auditory canal through the slightly widened porus acousticus and is also leading to mild mass effect upon the adjacent right cerebellar hemisphere and brachium pontus.  Measures 2.2 cm AP and 1.8 cm in height.  I'm no Dr. but it does sound similar.

I'm sorry you are going through this I know how hard it is.  This forum has been such a help to me and I see that you have already got allot of support.  I am surprised that it took 3 years to get a diagnosis.  My tongue and cheeks had tingling and they sent me for an MRI, what a shock.  I have had 3 opinions so far and they all agree on Translab approach which will automatically cause my right ear to go deaf (my hearing in that ear now is almost perfect) and radiation is out of the question. 

Unlike you I have few symptoms but only one option.  I live in MI but am tentatively scheduled for surgery with Dr. Slattery at House Ear Clinic on March 4th, depending on Insurance HMO with no out of network coverage.  They are working on it and I am hopeful.

My heart goes out to you and I do wish you the best.  If I can help you in any way please let me know. 

Sue

[epc1970]

Char
I remember that my surgeon told me that he would have been concerned if I had not been worried about the surgery cause then it would have been clear to him that I did not really understand what was going on. I know the fears that you have but I hope that reading the stories of those of those of us who have made it thru surgery will ease some of the anxiety. Good luck and keep us posted on your progress!
Erin

[char1957]

Thanks again to all of you who have posted, you have all been so kind and I appreciate you more than I can say.  I am humbled and grateful to have your support.

I have another question and don't know if I should ask here or post a new thread.  (this posting is as new to me as is having an AN)  Is there anyone out there that went into surgery with severe facial issues, had retrosigmoid and has come thru surgery with the facial issues fixed?  I would sure like to hear from you.

My facial issues include, right side of face, mouth, tongue, lips and throat numb and tingling constantly.  Some days my tongue on the right underside is so sore and does not seem to fit in my mouth properly anymore and my right jaw just aches, as do my teeth. Also, the inside of my mouth feels like it is scalded, with my entire tongue being fissured leaving me almost no tastebuds.  Right eye is enlarged and wakes me up some nights with shooting pain and tearing.  My right ear problems and headaches and vertigo sound pretty much in line with all that I've read.
 
As best as I can understand, my AN is on the 8Th cranial, pushing upward thru the 7Th, 6Th and into the 5Th?  Hope I am making sense of this.
 
Thanks for any input!
Char