newly diagnosed an

[berniejfnp]

 I am newly diagnosed with AN.  Over a period of 3 years or so, I noticed a decrease in my hearing.  Everything from too much noise, poor cell phone reception and poor enunciation of others took the blame for my decrease in perception.  I guess it was about 2 years ago that  I noticed my stability on one leg balancing was challenged.  Actually, last winter it seemed that I would have these funny dizzy spells that would last anywhere from a few minutes to hours.  Sometimes this spells were incapacitating, especially if I was downhill skiing and just departing a lift at the top of a black diamond.  My husband and I thought it was perimenopause/hormone stuff.  It wasn't until my trip to Montana that I really knew that something was wrong.  I went deaf in the left ear.  For 3 days there was nothing and gradually a tin distortion and loud tinnitus took over.  That was August 07.  After the vacation I was seen by my PCP who said it was barotrauma from the flight.  Not convinced I scheduled an appointment for myself with a former colleague who was an ENT.  An MRi was ordered and the AN was no longer invisible.  Now, I am dealing with the decision of surgery.  The tumor is 16mm X 8mm and dumbbell shaped at the cp angle.  i will be seeing Dr. Barker at MGH in Boston this week and am looking for any reassurance and support that will guide me.  I have searched many sites for info but really need experienced people wisdom at this time.  Any of you folks out there in the Boston area?
bernie

[Charlotte Lady]

Welcome.

I don't have anything to add about Boston.  As for information, my favorite one was the one from University of Minnesota.  They had a nice presentation, not too scary,  not too technical. 

Good luck

Donna

[krbonner]

Bernie,

There's a whole group of us from Boston - just met for brunch this morning!

I had surgery in Sept 06 with Drs. McKenna (MEEI) and Barker (MGH) - a very talented surgical team.  I'm exceptionally happy with my care under them.  Have you seen Dr. McKenna?  Most people I know get to Barker through McKenna, so I didn't know if you found Barker independently.

Your AN is small enough that you have time to research all your options.  Radiation is still an option, if you're interested, and there are several top-notch radiation facilities for ANs in the Boston area.  You don't need to feel immediately pressured into making a decision - the best thing you can do is take your time, do your research, and eventually reach a decision that's right for you and your particular situation. 

Please feel free to contact me directly if I can do anything to help.

Katie

[berniejfnp]

Thanks Katie for the support and feedback.  I am relieved to hear that there are many in the Boston area having dealt with this challenge.  I continue to learn and seek knowledge regarding this tumor.  it certainly doesn't really stop me from living my life but definitely changes the joy one experiences listening music.  It's funny, but I think my dog sensed something wrong 1 year ago.  Periodically I would have these strange sensations of dizziness, she would begin to nudge me and lick my hand or face.  The symptom was so temporary but noticeable seemingly only to me but the dog gave me up!! My sons and husband would ask why was the dog acting weird and I didn't know why.  It wasn't until every time the symptom occurred that she did this that I put two and two together.  Now she all but announces the spells to the family so all know.  It was the dog who really told me that something was wrong, she was persistent and clinging until the spell ended, Unbelievable, so incredible.  I look forward to learning, healing and sharing with others about this journey.  Thank you.

Bernie

[Sam Rush]

Bernie

In response to your e-mail, no problem for me using stethoscope w/ single sided deafness. After 38 yrs, I know what to listen for, but they do make amplified stethoscopes if you need one.

The noise in the jail could be a problem for you, esp. if you develop hyperacoustic tinnitus like I have.

 You will probably be able to ski this season, depending upon when you get your surgery or radiation.

I was back at work full time 2 1/2 weeks after surgery, but that was too soon. Figure 4-6 weeks,  10 to resume full activities, follow your Dr's advice on this.

Stay on this forum for any questions.

There is currently a bit of a controversy re: surgery vs. radiation, you need to talk to experts only, which we can refer you to, and make your own decision.

Best wishes

Sam

[whity4d]

Hello,

We, My wife and I are from Los Angeles, we used Dr Hitzelberger for her surgery. He works in association with the House Clinic here in Los Angeles. Dr Brackman also was in on the surgery. They gave us a wealth of information about the options. I know Dr  Hitzelberger travels all over the country to do these surgeries. He was one of the Doctors that developed the process that they now use for the surgeries. I'm sure there are some great doctors in Boston and they were probably traind by Dr Hitzelberger. He is a supper guy and you may want to call him just to chat. He is a supper guy in addition to being one of the best doctors there is.
Good luck. I'll keep you in my prayers.

Dan 

[lori67]

I think your dog deserves a big treat!  At least we can count on our best friends to take us seriously - even when sometimes the medical community just thinks we're nuts!

Lori (and my faithful 4- legged friend - Jenni.  Don't think she could diagnose anything unless I had a dog biscuit in my ear, but that's okay!)

[berniejfnp]

Thanks Dan for the support.  What approach was used to treat your wife?  Did she recovery quickly?  I have found this organization to be incredible!! Great feedback and support.
Bernie

[berniejfnp]

Hi Lori,

It was quite something to see what lengths the dog would go to get my attention.  Somehow she picked up on something that I didn't know could be perceived.  I could simply be sitting quietly, maybe in the car as a passenger when she would start in licking my hand, I finally tuned in to the fact that I felt funny, dizzy but not tipping over or anything, just not quite right.  This went on for sometime before I realized what she was telling me.  She is incredible, I have given her a treat, BECAUSE YOU SAID TO, and she's happy.  Thanks for responding to my story.

Bernie

[krbonner]

What an amazing special canine friend you have! 

Please let us know how your appt with Barker goes this week.  He's definitely not a "warm and fuzzy" kind of guy, but he's honest and straight-forward, will answer any question you have, and does good work.  Just don't expect him to be on time for his appointments!   

Katie

[4cm in Pacific Northwest]

Bernie,

I have a lab ... and a very similar story . Now he lets me know when someone drives up, gets me if I don't collect the phone on the 2nd  ring, came to get me when my youngest child called from outside and now stays close to me - on our walks... with no special training.

I think you should start a "service dog" thread ...

cheers,

4

[whity4d]

hello,

My wife, Sue, had the translab procedure. Her AN was about 4cm and mastic. Dr. Hitzelberger warned us that it would be a difficult surgery. In most cases the tumor is encapsulated in a bag and they can pull the whole thing out at once, but sometimes it is not, its like bubble gum stuck to everything. In speaking with the other doctors they were very grim with their prognosis of her outcome. Dr Hitzelberger assured us that he would do everything possible to assure the best outcome. It says something about a Doctor who thanks you for the privlage and confidence in letting him do your surgery. I consider him the most humble and down to earth man I have ever met. He told me that before he goes into surgery he says a prayer for the family and the patient that everything will go well. He really understands that we are putting our lives in his hands. My wifes surgey went very well except that the blodvessil that was feeding the tumor was also feeding part of her cerebellium so when they cut the supply it was like she had a stroke in that part of the brain. Sue's case was very unusual so you can't compare her's to yours but knowing that the surgery was going to be a difficult one we wanted to have the best there is work on her. I know in my heart that had I settled for anything less I may not have her here with me today. Sue is doing very well and most of the issues she had after surgery have come back close to normal. She is a little slower than she used to be but she is doing well.   

Dan     

[JTomes]

I am no expert on AN, but don't wait too long before having something done!

[Sam Rush]

As small as Bernie's is, he could wait, at least 6-12 months if he wanted to.

J T  What is your AN experience??

[ppearl214]

I agree with Sam that unless it's been shown to be growing at a rapid pace (as some of the folks here, as well as myself know....), there does seem to be time to do a bit of research.   I hope we get Bernie's dr appt update as I know many of us will be curious to see how the appt went at MGH.

Phyl