newbie in Florida

[jbenn]

Hi.  My name is Janice and I was diagnosed in July.  I have an 8x14mm tumor on the Right.  My hearing is pretty good, I can still hear, though a bit muffled, with my right ear.  I am thinking about going to John Hopkins with Dr. Tamargo and Dr. Niparo.  They suggest the retro/occipital approach. Has anyone who used them maintined their hearing and facial nerve?  It looks like most of the posts are now SSD, even when they started with hearing...  Sign me scared...but no crying yet today!! 

[leapyrtwins]

Hi, Janice.

Welcome to the Forum 

I had retrosigmoid a little over 3 years ago for an AN that was approximately 3 cm - not at Johns Hopkins, but in Illinois where I live.  I had very slight facial nerve issues for 24-48 hours post op, but that was the end of it, thankfully.  I also ended up SSD because my tumor was wrapped around my hearing nerve and in order to remove it entirely my docs had to "kill" the nerve.  I've worn a BAHA for the past 2+ years and am VERY happy with it.

Everybody's experience is different though, so my outcome really has no bearing on yours. 

I've heard of Drs. Tamargo and Niparo through this Forum and from what I've heard they are very well qualified and very experienced.  IMO you'd be in good hands under their care.

Did you discuss radiation with them?  From the size of your AN it should be an option, although location is also important.

If Drs. Tamargo and Niparo don't do radiation, I'd suggest that you consult with a doctor (or doctors) who do.  Docs who only do surgery, tend to recommend surgery and docs who only do radiation, tend to recommend radiation.  So, you definitely want to consult with someone who does both.

Last, but not least, you should contact the ANA for their informational brochures.  They are a great resource and answer a lot of questions about ANs.

Best,

Jan

 

[CHD63]

Hi Janice and welcome to this forum of caring, supportive friends.

I did not go to Johns Hopkins but I had retrosigmoid approach for my AN removal.  I had 80% hearing pre-surgery, 20% post-surgery with 100% speech discrimination.  Therefore I have had wonderful success with a high-tech hearing aid ..... nearly normal.  It took awhile to find the right audiologist with the right hearing aid, but now I am extremely pleased with my hearing ability.

It is perfectly normal to be scared ...... I was terrified upon hearing the diagnosis, but once I had a treatment plan I was at peace.  I feel like I have had the best possible outcome!

I do not know where you live, but I went to Duke Raleigh Hospital with Dr. Takanori Fukushima doing the surgery.

Tell us a little bit more about your symptoms.  At .8 x1.4 cm, you have several options for treatment, depending upon the exact location of the tumor and the severity or progression speed of your symptoms.

Best thoughts.  Clarice

[jbenn]

I went to sleep on July 3 and woke up in the night with this noise in my right ear.  I went back to sleep thinking it would be gone in the morning, but it wasn't.  And of couse still isn't.  I can hear on the telephone with that ear though the sound is muffled, so I often use the left ear.  I don't have any other symptoms.  I am hoping of course to preserve all I have now, but still want it out!  The surgeon I have talked with suggestes sub occipital/retrosigmoid approach.  That is Dr. Tamargo and the neuro otologist is Dr. John Naparko, though I haven't talked with him or met him yet.  I live in Florida so would fly up the day before for pre op and meet and then the surgery the next day.  I have spoken with Dr. T twice already on the phone.  He has been very good about answering all of my questions.  I have also considered flying to Baltimore just to meet them early but not sure that makes a lot of sense.  I would love to hear from folks about this plan, and especially anyone that has had Dr. Tamargo and Dr. Niparko at Johns Hopkins. Thank you in advance!     

[Cheryl R]

Janice, Have you looked into any surgeons in FL?       I know there have been ANers  over time who are from FL and their surgery there.  Shands comes to mind.     One can also  find a surgeon who does mid fossa which does preserve hearing in many cases but not all.    I know tumor location is part of it.     My neurotologist at Univ of Iowa does mid fossa and did keep mine on the one side and actually the rare case of improving it.        Several have had radiation with good results.    The outcome varies with any kind of treatment.       Some here are comfortable being watch and wait and seeing how time does.      You might have a chance of keeping the hearing longer as might lose it right away if have the surgery.             Your size is still considered small so have a good chance of good results with surgery later on.       Choosing the right treatment with the best outcome for each person is very hard.                 Some of us find it easier to go to a experienced dr closer to home and others have been across country to House ear Institute in LA for surgery.         Good luck in how it goes for you,                     Cheryl R

[leapyrtwins]

Janice -

the retrosigmoid approach (aka sub-occipital) will give you a chance of saving your hearing, but the odds aren't very good.

I chose retrosigmoid, although I knew the odds of keeping my hearing weren't great, and I ended up SSD (single-sided deaf).

Radiation would probably give you a much better chance of keeping the hearing you have. 

I'm not "pushing" either treatment type - that's a personal choice - but as I said previously if you haven't looked into radiation you should.

Jan