Recently Diagnosed With AN

[schmidtkat]

Hello,
I have been reading many of the posts on this discussion forum and trying to find the right time to join. As you can see, I'm taking the plunge. Perhaps my observer status somehow shielded me a bit longer from the reality.

I'm sure you'll see that conciseness is not really in my nature. Writing is a bit of a release for me. However, I promise additional posts will be brief.

So here is my story. My AN was discovered on July 28, 2011. What led to this was actually an infection in my right ear that was challenging to clear up. After a couple trips to local PAs without any improvement I sought the help of a local ENT. While the ENT drastically changed the course of treatment and nearly an immediate improvement in my ear infection resulted,  I still seemed to have some fullness in my left ear. It had looked clear the entire time, however I kept insisting there must be something wrong with the left ear too because I wasn't hearing well out of it during this time with my battles in the right ear. So my ENT suggest an audiogram to determine if and to what extent I was experiencing hearing loss in my left ear. The mention of a tumor being the culprit was just in passing, but certainly a consideration with unilateral hearing loss.The audiologist shared the results with me and confirmed there was infact a significant difference in hearing between my left and right ear. In particular, my left ear was poor with high pitches. Again, the mention of a tumor and this likely being related to the auditory nerve. So back to my ENT for futher consultation. At the follow up with my ENT it was suggested I have an MRI to rule out the possibility of a tumor.

The MRI was scheduled for a Wednesday and the consultation for Thursday. In the meantime, the radiologist had sent the disk with the MRI images home with me. I just couldn't help myself. I had to look. Wow, over 300 images of my brain. (Proof to the 2 teenagers in our house that I do have a brain. Although they sometimes think parental brain cells are pouring out.) I doubt that between senior pictures and our wedding I have ever had so many pictures. Although I certainly didn’t know what I was looking for/at, I imagined it should look symmetrical for each side of the brain. As I looked at it I kept thinking of Sesame Street…one of these things is not like the other. I could see a large white spot that appeared on the left side and was pushing things to the right. These images grossed out my husband and son. My daughter thought it was cool and wanted to show her friends. I turned to google images for MRI scans to compare. This probably prepared me a bit for what we were to about hear on Thursday.

When my husband and I went to the ENT's on Thursday afternoon to get the results we were taken to a consultation room where my images were on the screen. Here we were told I have an acoustic neuroma in my left ear. Because mine is 3.0 x 3.1 x 2.5 I was told  this is large and rules out some of the treatment options available for smaller tumors, "wait and watch" it or even radiation to shrink it. So mine needs to be surgically removed. The ENT suggested specialists at various locations and also credible web sites for more information.

To this point I have compared the diagnosis to a summer road construction experience in Iowa...finding yourself on a detour and wondering how you ended up going the direction you were, feeling lots of  bumps along the way, off the beaten path, rather disorienting, things coming at you too fast, watching for directions and signs, having to ask for directions, wishing it would stop because you were too busy to mess with this and thinking it will be great when its done but in the meantime trying to find the right path to get back on a smooth course.

Having this forum as a resource has felt a bit like getting a hold of a GPS device. I am getting some information to help me find the right path to healing. Consultations with several specialists coupled with countless hours of researching and lots of prayers have set a path for healing. My surgery will be perfomed by Dr. House and Dr. Schwartz of the House Ear Institute in Los Angeles, California on September 2, 2011.

I'm not sure my story is all that unique, although I can certainly appreciate and relate to so many of the comments posted on here. It's scary. I am devastated with the news. I am an active 44 year old with a professional career, 2 teenagers and a husband, and want to just wake up from this bad dream with it all gone. I want to be me again. I am anxious for the surgery to be here and am trying to prepare at home as well as at my office. However, my symptoms are worsening and I get terribly fatigued. Some days I feel like I'm nesting like an expectant mother preparing to bing home a newborn. I wish it were that kind of happy event.

One AN survivor on youtube has shared such a moving and inspiring story...she says she lost her hearing to this to save her life...because she lost her hearing she gets to live. When I'm on my pity pot I think of her uplifting comments and know that I have much for which to give thanks. I pray for the patience to leave this in God's hands and that He will guide the work of the surgeons hands.

Thanks to all the AN survivors who are willing to stay connected with those of us just entering this forum. You are truly paying it forward. I hope that my healing journey will result in me being able to do the same for others.

I have created a page on the CaringBridge and welcome anyone who wants to be more connected with my journey http://www.caringbridge.org/visit/kathysconnection

[sterry]

Welcome to the club, Kathy.
      I actually didn't find this site until after my surgery, but I felt I was on autopilot after my diagnosis, and mostly went to work and came home and slept to do all over again the next day. I was 45 when I learned that I had a 3.7 cm AN, with two in college and one at home in the 6th grade!
I feel that you have made an excellent choice in surgeons, I also went with HEI, and they also saved my life! I was able to return to work full time after about 8 weeks and I feel a lot better now than before! I have more energy too!
   I too traveled to LA, I'm actually in Wyoming. On the way home get the airline to meet you with a wheel chair it is the only way to maneuver the airport!!
  September will be here before you know! Keep positive thoughts and yourself heathly and you'll be on the healing side soon.
Susie

[Sue]

Hi,
Welcome to the forum.  Please go to the Balance issues page and look at the post regarding an article that explains the balance system.  It will help you understand some things about what that darn AN can do.   So, that's out of the way!  Next...just make sure your surgeons are top notch and highly experienced. Oh yeah, HEI!  Got THAT covered...    And remember, you have two ears.  One will no doubt lose it's hearing function, but you got ear number two!!  Your life will not be that much different being deaf in one ear.  Different, yes, but humans are highly adaptable,which is a good thing!!  And there is BAHA which you might work for you. 

I alway say that if I could get rid of any of my symptoms, the tinnitus usually comes in first.  I also have trigeminal nerve involvement so I have facial numbness, and that comes in at a real close second.  Third is the deafness.  There are other things that can be way more annoying than not hearing out of one ear, strange as that sounds.

Anyway, I wish you the best...

Sue in Vancouver, USA

[CHD63]

Hi Kathy and welcome to this forum of your new friends who understand exactly what you are going through without you having to explain.  You will find here MUCH support and empathy as you proceed through surgery and recovery.

First of all, you have done all of the "right" things by being pro-active and doing your homework.  Knowledge is power.  When everything seems to be spinning out of control, you can take comfort that you have taken charge of everything you can.

As a fellow HEI alum (Drs. Friedman and Schwartz removed my AN three months ago), I know you are going to be in the best of hands at HEI.  From your other post, you expressed concerns about being worked in on a Friday.  Do not be afraid.  They purposely leave spots open for cases such as yours so they are not "working you in" as in squeezing you into an already full schedule.  They are fantastic out there so you should feel special not scared.

Are you and your family staying in Seton Hall?  My husband and I did.  Although not a plush hotel, it was clean and comfortable and the price is right!!  Plus, we had the added bonus of an additional support group of friends we made while there.

If you have an additional questions, feel free to PM me.

Many thoughts and prayers for you.

Clarice

[JerseyGirl2]

Hi, Kathy,

I'm yet another HEI alum -- my surgeons were also Drs. House and Schwartz -- and I flew out to LA from New Jersey in January 2008 for the translab procedure. You will be in absolutely wonderful hands there! The entire experience was a positive one and I found all the medical personnel to be professional, skillful, and compassionate. The view of the "Hollywood" sign from my hospital room was an unexpected bonus.

My husband and I stayed at Seton Hall for the whole two weeks (we did spend the last night at one of the LAX hotels since we had an early morning flight back to the East Coast), and as Clarice mentioned it's quite clean, comfortable and reasonably priced. I was feeling fine prior to my surgery (my only symptom had been hearing loss), so we were glad that we rented a car for our sojourn and enjoyed doing a lot of sightseeing, etc. during the days before my surgery as well as afterwards (I was one of the lucky ones whose only post-surgical issue was fatigue -- no nausea, vertigo, or vision problems).

I would go back to House in a heartbeat and will always be thankful for the wonderful care I received there. (That being said, I know you've read on this forum that there are many, many wonderful AN surgeons throughout the country, and I'll be the first to agree that House is by no means the "only" place one should consider.)

I wish you all the best for a successful surgery and a smooth recovery period!

Catherine (JerseyGirl 2)

[kim508]

First Welcome, its a group anyone really decided to be in, you kinda fall into it when you have or are supporting someone with an AN. I didn't find this group till after my surgery and I think the reason for this is because I couldn't face it 100% till after the surgery cause i wanted to continue my day to day activities.
My AN was about the same size, it was 3.5 and Baily you have on option and its surgery. I wish you good luck and remember your not in this alone you have Your family and us here. I was a little younger then you but I feel no matter what the age we are all so easily re-latable because of our common tumor.
Good luck and vent as much as you need to as the surgery date comes.

Kim

[Jim Scott]

Hi, Kathy ~

Thanks for deciding to post.  I'm glad you did - and don't be concerned about the length of your post because we have no limitations on word-count.  If we did, I would be in trouble as I'm well known for lengthy posts.  You presented an informative account of your AN experience up to this point and I appreciate the care you took to do so. 

I had a somewhat similar experience (large AN, surgery - quickly - the only option) and I'm pleased to relate that I enjoyed a successful surgery and a rapid recovery.  Like you (and most AN patients) I just wanted it over and to get back to my 'normal' life.  Well, I did.  It took a few months but I managed to get past the effects of the surgery and resume my normal activities in a fairly reasonable period of time .  Our situations diverge a bit because I was 63 at the time of my surgery, my son was an adult and I was recently retired.  However, my desire to get past the experience was a strong motivation in my recovery and I think it will be similar for you.  As you know, HEI is renowned for their work with AN surgery and should prove to be a good choice for you.  Of course we hope you'll continue to use these forums as a resource and that you'll keep us updated as you move toward the Big Day (September 2nd).  We'll inform, advise (when asked) and support you in any way we can, Kathy.  We know where you at this point because many of us were once in your shoes.  We want to help and we care about what happens as you continue your 'AN journey'.  Please try to stay connected here.  Thanks.

Jim

[leapyrtwins]

Schmidt -

I can relate to your story. 

I was 45 1/2 with a professional career and two kids (10 1/2 at the time; teenagers now); no husband though.

Being diagnosed with an AN is quite the shock.

But there is good news to be had.  And there is definitely life after an AN.

I didn't have my surgery @ HEI - I had it locally - but I had a great outcome.  My only permanent side-effect is SSD, which I've improved greatly with a BAHA (bone-anchored hearing aid). 

Good luck on your road to recovery,

Jan

[schmidtkat]

I'm just starting to hear about the BAHA, no pun intended. If anyone is willing to share the pros and cons of these I would sure welcome the comments.

[CHD63]

Kathy .....

I knew going in to my translab surgery last May that I would be totally deaf in my left ear as a result.  I also knew I would not be happy with hearing in only one ear.  I discussed it with Dr. Friedman before surgery and he said he has put in many abutments during surgery.  Therefore, I asked him to put the abutment in during the same surgery as the tumor removal, which he did.  I had absolutely no problems with the healing of the abutment or the surgery.  Two weeks ago I was able to attach the processor for the first time.

I also knew that no hearing device would duplicate normal hearing.  However, the Oticon Medical Ponto Pro bone anchored hearing device I have is certainly far better than no hearing on that side.  I attach the processor as soon as I have showered, shampooed, and dried my hair every morning.  I leave it on all day until I am getting into bed.  I do not even notice I have it, except now I do not have to twist my back around to aim my "good" ear toward a person speaking or checking for traffic from my left side.

I guess the only con would be if you have problems with healing of the abutment, which I did not have.

Feel free to PM me if you have other questions.

Clarice

[leapyrtwins]

My two cents worth:

Pros of the BAHA - it definitely beats being SSD without any kind of "aid".  You can hear - or really you think you can hear (you actually can't) - people speaking on your deaf side.  You say "WHAT???" a lot less often and you get frustrated a lot less.

Cons - it will never be like your normal hearing was.  It is somewhat limited in noisy and/or crowded rooms - although my BP100 is a vast improvement over my Divino.
(both Cochlear devices/processors - BP100 is an upgrade to the Divino).  BAHAs also do not generally give the wearer directionality - although I've found over time that I've gained some.

I've had my BAHA for over 3 years now and I still love it as much as the day I first tried the demo - and couldn't wait to have the implant surgery.

My surgery was a piece of cake - done outpatient with local anesthesia and no sedation.  It was a quick, easy, painless surgery - as was the recovery.  Although this is my experience, it's generally the same experience for most who choose the BAHA - but some do choose general anesthesia or local with sedation.

Here are some links that might interest you:

http://www.umm.edu/otolaryngology/baha.htm

http://www.cochlearamericas.com/

Jan

[Crazycat]

Good luck with your surgery Kathy. You're in good hands with the doctors you've chosen and you'll do just fine!

Paul (Van Gogh) ;-)

P.S. - Just had my yearly MRI today. No regrowth after six years. So far so good....