ANA Discussion Forum

AN Community => AN Community => Topic started by: Joef on July 29, 2005, 11:45:10 am

Title: Newbie with 3.9 AN
Post by: Joef on July 29, 2005, 11:45:10 am
Hey everyone,

    I've been diagnosed with a 3.9cm AN, about a month ago. This forum has been a big help with understanding my dilemma.(I've been a lurker) I have surgery scheduled with Dr. Brackmann at House on Aug 9 . and I can't wait ! ... these symptoms are driving me crazy (numbness,dizziness,ear ringing, no headaches yet),  I'm looking forward to getting this over with and going on with life (I'm 40)... I will lose the hearing in my right ear (which is gone anyway) and was thinking about BAHA  .. anyone here have it? does it work well? ... and any problems with airport security with a bolt in your head  :o ???

  Joe
  Shelton,CT USA
Title: Re: Newbie with 3.9 AN
Post by: Jessie127 on July 29, 2005, 01:24:06 pm
Hi Joe,

  I'm also scheduled for surgery in House but with De La Cruz; I have a 1.2cm AN I really liked the doctors and facility over there.....Everything will be fine with you too

Jessie
Title: Re: Newbie with 3.9 AN
Post by: jenifyer on July 29, 2005, 02:10:48 pm
i am scheduled to get my BAHA on aug. 24th.  i will let you know how it goes and what i think. i think i have to wait 10 - 12 weeks before i can start using the device though.

jennifer
Title: Re: Newbie with 3.9 AN
Post by: Joef on July 29, 2005, 03:52:18 pm
i am scheduled to get my BAHA on aug. 24th. i will let you know how it goes and what i think. i think i have to wait 10 - 12 weeks before i can start using the device though.
jennifer

  Yes, from what I understand the "bolt" needs to heal (a few months) before you can use it ... did insurance pick up the tab? I'll talk to house once I'm there to see how to proceed with it..

  any thoughts on what to pack for the trip to LA , its not like a vacation trip ! I'll bring extra Pajamas and such (witout the booties :D)

  Joe
  Shelton,CT USA
Title: Re: Newbie with 3.9 AN
Post by: russ on July 29, 2005, 07:40:11 pm
Hi
  Well the post is made of titanium which I'm not sure sets off metal detectors or not.
  Have you checked the 'entific' web site re: BAHA?
  Best wishes for a good surgery, recovery and cross over hearing!!
  Russ
Title: Re: Newbie with 3.9 AN
Post by: viejita on July 29, 2005, 08:46:52 pm
About the airport security, I have a couple of 5 or 6 inch long titanium rods and at least 6 1&1/2 or 2 inch long screws in my lumbar spine.  My Dr. gave me a special card to carry.  I couldn't tell you how many times I have been through security both in airports and courthouses and never set off anything!  If someone moves a handheld wand along my spine, that will go off.

Susi
Title: Re: Newbie with 3.9 AN
Post by: rntiggergirl on July 29, 2005, 09:21:34 pm
Hi
I have a BAHA.  I have a card that I carry with me explaining the titanium screw but I have never set off any alarms.  they tell you to take off the external device before going thru the scanner, I just put it in my purse and have had no problems. 

Cheryl
Title: Re: Newbie with 3.9 AN
Post by: matti on July 29, 2005, 09:37:59 pm
I went to a BAHA seminar last year and the question regarding setting off alarms at airport security came up and their answer was "no". I would carry the card regardless.
Title: Re: Newbie with 3.9 AN
Post by: Joef on July 31, 2005, 07:48:20 am
Hi
I have a BAHA.  I have a card that I carry with me explaining the titanium screw but I have never set off any alarms.  they tell you to take off the external device before going thru the scanner, I just put it in my purse and have had no problems. 

Cheryl


So tell me, are you happy with BAHA ?

Title: Re: Newbie with 3.9 AN
Post by: jenifyer on August 01, 2005, 03:41:15 pm
Hi,

My insurance is covering 70%.  i had to pay $5000 for the device ahead of time  because the doctor has to order it and when he gets reimbursed i will get it.    I am not sure how much the surgery itself is going to cost.  I have titanium plates and screws already in my head from my first surgery 5 years ago and i have never set any alarms off. i don't think that will be a problem.
I haven't been online in a while so i am not sure if you have already gone to california.  all you really need is comfortable clothes or pajamas and toiletries.  good luck!
jennifer

Title: Re: Newbie with 3.9 AN
Post by: Joef on August 02, 2005, 06:57:19 am
I'd like to get BAHA ... thanks for your comments.. most seem to like em ...

my other question are there any long term issues with AN surgery?.. any 20+ year patients out there ? I think 20 years ago, these surgerys were not as successful, and we don't have any good long term history. My surgery is due Aug 9 *next week!* at house.

  Joe
Title: Re: Newbie with 3.9 AN
Post by: Jeff on August 02, 2005, 08:14:48 am
Hello Joe,

My father and I have NF2, thus bilateral AN's. My father had his removed in 1973 amd 1982 without long term problems other than deafness. The doctors did leave a bit of one of the tumors in order to preserve his facial nerve, and it did grow some 15-20 years later. He had a surgery to remove it last year and is doing great. He is in his 60's now and in excellent shape. Also, I have a titanium plate in my head and don't set off the detectors in airporrts. Best wishes on a successful surgery. You are in good hands at House.

Jeff
Title: Re: To Newbie with 3.9 AN ... 20+ years out
Post by: Cheryn on August 02, 2005, 10:06:44 am
Hi everyone, I was diagnosed with a small 5x9mm AN on June 24th. In researching what the impact was and what the future held I talked to someone I had grown up with. He had the AN surgery 40+ years ago at the House. He was ten at the time. I had no idea he had gone through any surgery, let alone brain surgery. He played football all through high school, raced cars, you name it, and he  has had no problems since then. He lost his hearing in the AN ear, which I believe was far more common back then. I also found out that I work with a man who had AN surgery in 1998 at the House and is he is doing beautifully also. I am scheduled for surgery on August 19th and I am feeling far more secure about what the future holds as a result of these two contacts and all the wonderful input from the people on this board. I feel confident that I have the best possible care and am eager to get this all behind me.
Title: Re: Newbie with 3.9 AN
Post by: Joef on August 02, 2005, 01:27:37 pm
Glad to hear the long term prognosis is so great  !!  8) I guess I need to keep adding to my 401k  ;)
Title: Re: Newbie with 3.9 AN
Post by: Gabi on August 03, 2005, 09:26:31 pm
Good luck to all who will be undergoing surgery soon!  And thx to all who have shared their histories . . . give us newbies hope!
Title: Re: Newbie with 3.9 AN
Post by: Cheryn on August 04, 2005, 03:20:17 pm
I think we'll be fine. I'm thinking of having air bags installed until I get my balance back. My hair dresser asked if the doctor could "staple" a little flower to my shaved side..... :D  I'm terrified about the whole thing. They will need an elephant tranquilizer to get me there on the 19th but on the 20th I'll be on my way to recovery. I made the best choices I could and now I must trust that I have the best possible care and a strong determination to be back to normal (for a blonde)....
Title: Re: Newbie with 3.9 AN
Post by: Joef on September 21, 2005, 06:19:26 am
My AN story ....
   I had some hearing lost, some dizziness,and numbness my cheek ...my GP sent me for a MRI and I had shock of my life, I see the 4 cm AN pressing up against my brain. I ended up going to House in LA .. I live in CT. and I'm 40

Surgery was scheduled for Aug 9 , 2005.  On Aug 8. I Met with Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty. (and a BAHA too), I quote "the tumor was huge" from Hitselberger!! and took about 6 hours. These were all great Dr's and I would  recommend at least to send them an MRI for a opinion... I ended up staying at hospital longer than I thought (7 days) because the facial monitor "lost" signal before the surgery was over, which I come the find out later might of been a stoke !!!! (its hard to write my name and other signs of a stoke)

its been 6 weeks now and I feel little behind the curve with most of you here but I am coming around quickly. I still feel a little off balance (I not driving yet),facial issues (speaking not right), and dry eye (I use tape and laci-lube) , but other wise feel good !! and I started to work half days from home (I'm a programmer so I can most of my work via DSL).

I see progress every day with my facial nerve and balance issues, and think I will surprise them and how well I'm doing when I go back to HEI for a MRI checkup and BAHA on Nov 17 ..

    Joe
 


Title: Re: Newbie with 3.9 AN
Post by: Joef on December 15, 2006, 04:29:45 pm
I went back to read my old messages .. kinda fun and interesting ... those were dark days ... I actually seen some more improvement in my smile  ;D I'm getting there!!
Title: Re: Newbie with 3.9 AN
Post by: yoga52smh on December 15, 2006, 05:39:53 pm
Great Joef, I'm glad to see all the progress.  You looked great at the brunch.  Our bodies are amazing, in that I think they want to get back to normal as much as we want them to! Continue to improve.  Best wishes to you and all. I remember your post.  It's about the time I started reading this site faithfully almost every nite.

Happy holidays, Merry Christmas    :D   sue
Title: Re: Newbie with 3.9 AN
Post by: nancyann on December 15, 2006, 06:30:47 pm
   Joe,

   I think this is so cool.
  To look back pre-surg, 8/05, then report back 9/05 -
      already starting back to work less than 1 1/2 months post op with a 4 Cm !!!
      & seeing where you're at now.

   You always had a positive attitude pre, and post op !!!

Hey,   Glad to hear there's improvement in the smile,  YEEEAAAAH !!!!!
 (keep them positive facial vibes coming !!!!! ).

Take care Joe,     Nancy
Title: Re: Newbie with 3.9 AN
Post by: Crazycat on December 16, 2006, 03:31:23 am
Joe,

   Just got in from working. Can you believe it? Talk about wonky-headed! My deaf ear is ringing and vibrating non-stop.

I didn't realize that this thread was from your pre-surgery days. Now you're a vet! I bet it must be somewhat comforting to look back at those posts and know that the fear and anticipation is all behind you now. I didn't join this forum until 2 months or so after my surgeries so I don't have the archived memories. I just remember the ever-growing malaise and sickening fear that I went through.
   Catch you later. Time to sleeeeeeeeeep........


   Paul