Recently diagnosed - very large AN

[schmidtkat]

Hi Rick,
I'm new to this as well. I just made my first post tonight and this is my first response to someone else. So I am not feeling very adept at this.

Your post really caught my attention as I too have been recently diagnosed with an AN (3.0x 3.1 x 2.5) and have surgery scheduled at the HEI. When my surgery was scheduled I was told they are squeezing me in on a Friday, and usually do not perform surgeries on Fridays. While I'm relieved they can get me in, it's also a bit alarming that they are doing this on a day they usually have off from surgeries. I'm not sure whether I should feel special or scared to death.

I just took up biking this spring and have really enjoyed it. It's odd that I used my years of not having riden one as my excuse for wobliness on the bike trail. I have also been an avid horse rider since my childhood. I have been showing horses in competitions as recent as 10 days prior to my diagnosis on July 28th. So balance had not been a big issue for me.

My MRI, audiology report and local ENT records were reviewed by Dr. House. He and Dr. Schwartz will be performing my surgery on 9/2. I buried myself in research immediately following my MRI. From everything I have read and from the people in my area who have been willing to share their experiences, I have peace of mind knowing this should be the best place for me to go. I have faith that this is in the Lord's hands now, and hope he will bless the work the surgeons do. I pray the same for you! May you find healing and peace. God Bless.

[rvb755]

Kat, thanks for the prayers and I'm sending prayers back your way.  If you are having surgery on 9/2 you will probably arrive before my wife and I leave.  I am having surgery on 8/24 and they told me to plan on being there until 9/2, but of course that all depends on how recovery is going.  Your story sound so much like mine.  I was going about life as normal and finally got tired of the poor hearing and decided to get it checked out.  Of course now I wish I had done it much sooner, but I can't worry about that now.

I got the packet from HEI in the mail yesterday and spent last night filling out the medical history questionnaire.  I will be having consultations with Dr. Friedman, Dr. Schwartz and Dr. Stefan on 8/23, the day before surgery and have to be to the hospital at 5:30 am on 8/24 for surgery.  The date is coming up fast, but I feel ready.

Rick

[schmidtkat]

Hi Rick,
We might get to cross paths. My surgery scheduled for 4:30 AM on 9/2 at the HEI, the pre-op stuff is on 9/1 beginning at 8:30, and we were told to arrive the day before to make sure we are there. So we will arrive on Tuesday, Aug. 30th. Do you have family staying at Seton Hall?

My packet arrived on Friday. Wow, that's a lengthy document. I worked on mine Saturday and again today. It was challenging to answer the questions regarding when the symptoms began. Mine seemed to have been quite subtle, or at least I had what seemed to be reasonable excuses for them for a period of time.

I feel like the date for my surgery is an eternity away. Now that I know what the thing is and that surgery is the only option, I want it out...yesterday. Although, it is taking some time to plan flights, lodging and make preparations for things at home and work. So I need to have patience.

It's so good to know you feel ready. I have been fortunate to find 2 people relatively close to me here in Iowa who have each shared their AN stories. One of which had your pair of Drs. and their teams. She cannot say enough good about them and would go back to them in a heartbeat. I highly value her opinion and know that she thoroughly did her research to arrive at her decision to not only have the surgery (hers was small enough she could have done the radiation), but to have Friedman & Schwartz. While she is thoroughly pleased with her outcome, the other individual I have come to know would say just the same of her team at the University of Iowa with Dr. Gantz. So I think it's like many have indicated on this forum, there are many experts to choose from and you have to go where you feel most comfortable. For me, most comfortable is gauged by their experience and prognosis for a successful outcome.

I read that you "have already come to grips with losing the hearing on the left side, but like everyone else would like to keep the facial nerve function and hope for as little balance problems as possible." Wow, I would echo that!

Prayers go out to you for a successful surgery and speedy recovery!
Kathy

[CHD63]

Rick and Kathy ......

Many thoughts and prayers for peace and calm as you prepare for surgery.  I know you are in excellent medical hands.  The rest is up to God.

Take care.

Clarice

[rvb755]

Kathy, I will have family staying at Seton Hall.  My wife is flying out with me for the whole stay and my parents are flying out the day prior to surgery and staying at Seton with my wife for a week.  Hopefully I am recovered enough by time you get there that we might bump into each other.  I can completely relate to wanting the thing out.  I have been telling everyone the same thing.  My stress level went down a ton after I got a surgery date scheduled at HEI.  Do you have anyone staying at Seton while you are there?

Rick

[Anasazi42]

Rick and Kathy,

Sending good and healing thoughts to you both. I'll be praying for you.

[schmidtkat]

Hi Rick,

Yes, I do have family traveling with me. While this is not the LA vacation I would have prefered for our kids, they are coming along for a short stay. They really want to be there for the surgery. They are 15 and 17, so we kind of explained everything to them and let them decide. They will be missing some school, but I think they would have been mentally checked out for those days anyway. My husband will be with me for the entire stay.  We also have additional family flying out to  take the kids around to some sights and make the return flight with them.

A huge weight was lifted when the surgery date was set. I actually slept through the night when I received the news. It's almost a sense of peace that I feel as I am able to share with those who ask where I'm going, when and why. There are certainly lots of other details to attend with home and work in preparation, but having this part sorted out is a relief. I can't mark the days off the calendar fast enough.

To those who have responded to me in this post with Rick, I thank you. It's comforting to not be in this alone. Although, I don't wish it on anyone.

Kathy

[Denise S]

Dr. Friedman told me they do not stage surgeries.  Meaning they will only perform one surgery.  Rita at HEI said plan on being in California until September 2 (surgery is on Aug. 24) but obviously the return date can change depending on recovery.  I was very impressed with Dr. Daniels in Grand Rapids, and he has told us he would be happy to help with the follow up work and I am sure we will be seeing him again.  You say you were referred to Michigan Ear Institute.  May I ask who referred you there over Dr. Daniels?

Rick

Sorry I didn't get back right away.  I am terrible that way with this site now...can be on everyday for days, then not at all for days. 

Anyways, my local ENT from Ludington referred me to MEI and my internest recommend it too because he knows others who were treated there too.      SO glad to hear you are able to 'try' to not get a multiple staged surgery.   Will be awesome if they can get it all at once!!     You are going to be in GREAT hands out there for sure and SO glad to hear Dr. Daniels is open to working with people after going there, this is so great!!   Heard he was a nice guy.  Hope to be able to meet him in the winter or spring to get me a BAHA (thinking the Oticon Ponto Pr).   

Wishing you the BEST of luck on your 'journey'.   Hope you get to enjoy some of your time out there and see some new things!!

Denise (MI)

[Desilu]

Hi Kathy,

Just wanted to mention one thing. My son, 15 at the time and my sister went with me for my surgery. The day of my surgery, when I was in ICU, (I was told this much later) my son came in to see me and got sick to his stomach. It was the first time that he saw his mother hooked up to all sorts of machines and tubes. It wasn't until the next day that I was alert and talking. He did much better after that. I think he internalized most of his feelings and it got the best of him. Just wanted you to be aware that the first day is not always a pretty sight. Maybe they should wait a day to see you? Although your kids may be able to handle it a lot better than mine did. I wish you the best. Ann