Recently Diagnosed with AN

[debraclark]

Hi I have been checking out this site ever since the beginning of July. I had problems with my right ear since last November. My regular doc barely looked at me several months ago and said it was fluid, but I was not dizzy. Anyway I let it go for a while, my ear felt stuffy etc. I just went thru my brother having an Pituitary Tumor and surgery in FLA, and kinda put all my problems on the back burner so to speak. Couple months ago I noticed I could not hear as well when answering the phone at work and have a constant ringing in my ear. I went to a local specialist ear, nose and throat. Said ears look good, but hearing test was bad. Sent for MRI with and without contrast. They gave me the films to take to doc on my next appointment. I peeked of course and without the contrast I saw nothing but with it " I was like oh my god what is that? It lit up like a lite bulb. I knew before the doc office called me the next monday with the results what I had. I was freaked out the whole weekend. They made me an appointment with a specialist in Phila I just went yesterday. The tumor is 3 cm, causing a little tingling facially and balance gets a little wacky at times, I still have the lovely ringing in my ear and stuffyiness. Due to its size and my symptoms I am facing surgery, I go back to phila on the 29th of this month to see a neurosurgeon, then balance testing etc, then will know which surgery will need. I have been reading all your posts and they have been very helpful, now I guess I am just joining in for all your advice and support. I am so glad I found this site. I tell everyone Lucky me an acoustic neuroma is 1 in 100 thousand , instead of winning the lottery I won a tumor. Go figure. Has anyone had surgery at Jefferson In Philadelphia, they tell me I would be in ICU for couple days and hospital for at least a week? Thanks for letting me vent. I am sure I will be doing that more and more as I go thru this journey.

[Jim Scott]

Hi, Debra - and welcome to a website you probably wish you didn't have a reason to visit. 

Your account of your symptoms and subsequent AN diagnosis via MRI with contrast is fairly typical, as are your dismay and anxiety over that diagnosis and search for advice.That's where the ANA website discussion forums come in.  Our members are diverse in their age, location and experience with an acoustic neuroma.  Equally important, they are friendly folks, eager to welcome you and offer whatever they can to help you through this journey.  I'm confident that they'll be adding to this thread, soon.

To answer your questions: the 'typical' ICU stay for a post-op AN surgery patient is 24 hours and the typical hospital stay a total of five days.  Of course that can vary based on a variety of factors including whether any post-op complications arise, your doctor's judgement and your rate of immediate recovery.  Some AN surgery patients are home in less than five days, a few, with complications such as CSF leak, stay longer.  'Five days' is an average.  As we so often mention: we're individuals and although we all have the same type of (benign) tumor, our experiences with surgery (or radiation) and recovery will necessarily be somewhat different for each person, in some way. 

I trust you'll continue to visit the ANA forums and keep us apprised of your situation as it unfolds.  Of course, we wish you a trouble-free surgery and a rapid, complete recovery. 

Jim

[skipg]

Hi Debra,
Welcome to the forum and I am sorry for your "winning a tumor instead of the lottery." Keep the faith and do your homework. Research and then research some more. Be informed and talk to as many professionals as you are able. Many times the experts are in agreement with the type of procedure you ultimately choose. There is a wealth of information here for you to explore. Good luck on your journey and keep us informed.
Skip

[Chances3]

Hi Debra,

Sorry we have to meet this way.  I had my tumor removed surgically 2 years ago.  Jim's description is quite good, and describes the process less any complications.  I did 1 day ICU, total of 5 in the hospital.  Don't be afraid to vent your frustrations here, you're among people who have journeyed down the road already, and we all go through so many emotions.  What I would like to say, it's unhealthy to wallow in self pity, and I did plenty of that in the beginning.  We have to count our blessings, and try to make the best of this.  As Skip has said already, learn as much as you can because you will have to make a decision about your treatment options, and you want to be armed with all the information you can get so that you can make the very best decision that is right for you.

I know you are in a very scary place, take a deep breath, don't rush into anything.  Stay strong my dear !

Bob

[debraclark]

Thank you all with your kind words and information. I have been doing alot of research here and the internet and I think the one doctor yesterday was surprised by what I did know, I almost think he looked relieved that I knew what he was talking about. I started out in WHY ME stage, then somedays I am fine and feel I can handle this, there are those few days tho that I get teary eyed and afraid  So many emotions, and trying to do my job during the week and try to seem like everything is fine is kinda exhausting. Anyway I do have a great support of my family and others, and I am looking forward to having the support in this group too, because as I have seen others say before no one else knows or can really relate to what we (with the tumors) are going thru. Two years ago I had to have an total hysterectomy, took me a while to feel like myself after that but I joined a site during that time that was a godsend to me before during and after. It really does help to talk to others going down the same path.

[LakeErie]

I don't know if this typical or not, but once my decision about treatment was made, and my surgeon selected and operation date set, I became calmer as the time passed. The ups and downs stopped once I knew
what was going to happen. I did have one advantage in that the tumor's brain stem compression was severe enough that I was told I didn't have six months to make a decision. I needed the tumor out in 6 weeks. Only 10 days passed between getting the MRI results showing the tumor and my two appointments for surgical opinions. I decided where to have the surgery the day following my opinion appointments. The other advantage I had was I instantly felt  the 2nd surgeon I met with was the right person to treat me.

[CHD63]

Hi Debra .....

Adding my welcome to this unique group of new-found friends, who are very caring and supportive!  So glad you found the ANA and all of the benefits of their information and the value of this forum.

If you have not already done so, send for the free informational materials from the ANA.  See:  http://www.anausa.org/index.php/contact-us/free-ana-information-packet?view=message&layout=message&pf=4  There is a wealth of accurate information available in it.  You might also want to seek out the closest support group to gain information on medical professionals in your area with vast experience treating acoustic neuromas.

Thoughts and prayers.

Clarice

[mindyandy]

Debra
Welcome I know this is not the club you wanted to join. Nobody here wanted to join this club but we are all wonderful people fighting the same battle. All ages, races, and genders...no discrimination here. LOL
Have you decided where you want to go to have surgery? I would send your scan out to a few different places to get opinions. This way you have options. Clarice mentioned the free information. Clarice is always on the ball 

We support eachother. If you have questions don't be bashful ask away. No silly questions here.

*hugs*
Mindy

[debraclark]

Thank you for the responses. Yes I did join the ANA and I got all the info. Very informative, its looks like I will be at Jefferson Neuroscience in Phila, they are actually affiliated with the ANA. I live in South Jersey and we do not have such things available to us here. Phila seems to be the place to be with this. I still have to meet with the surgeon on the 29th, but the ear specialist seemed to be leaning toward the retrosigmoid? As opposed to the translab, but he said it is up to the surgeon, and the location of the tumor etc. I have researched the translab thinking it was better, but I see alot of you have had the retrosigmoid. How was your hospital experience. This is hard on me more so because I am the one in the family that is strong and there for everyone else. Not so strong for my self. =)

[pjb]

Seeing that you are in New Jersey have you thought about going to any of the New York surgeons listed and also you can send all your records to HEI they are excellent and do these all the time and can give you their expert opinion over the phone would be a great idea more opinions the better but sometimes can be overwhelming as well. It is so important to have a great team doing the surgery for a better outcome and ask numerous questions I did not and regret it now..

Thoughts and Prayers are with you.

Best Wishes,

[millie]

Debra-
I loved your line about winning a tumor rather than the lotto-lucky us!
I feel the same as you-I have been watching and waiting but moving on action in NYC in October. 
I also feel many people depend on me and I don't have time to be unwell.  I am hoping and believing most recoveries go well and mine will too.  I have already lost my hearing in the left year-this has happened over the last year, mostly.
I will be following you on this site.  Best wishes.  Millie

[debraclark]

Thank you for your replies everyone, I really appreciate it.

[leapyrtwins]

Thank you for the responses. Yes I did join the ANA and I got all the info. Very informative, its looks like I will be at Jefferson Neuroscience in Phila, they are actually affiliated with the ANA.

Just wanted to note that no facility is "affiliated" with the ANA.  The ANA also don't recommend doctors or facilities.

The ANA does certificate docs/facilities as Centers of Excellence, which means they have to pass a rigorous set of standards when it comes to AN treatment.

Not that Jefferson isn't a good choice, but there are numerous docs in the NY area who are good choices also; Roland & Golfinos, Selesnick, Sisti, etc.  You might want to consult with some of them just to get different opinions.

Jan

[debraclark]

Sorry I stand corrected. The right words and thoughts do not seem to come out of my mouth anymore. Anyway what I meant to say is one of the top Neurosurgeons from Jefferson is on the Medical Advisory Board and yes they are listed as a Center of Excellence. Thank you for bringing my miss quote to my attention. I do not want to mislead anyone else in their search for a surgeon.

[Cheryl R]

Plus I remember reading that the surgeons on the centers of excellence pay to have their center on the list.      My neurologist in Iowa is not on there and is very well known for his large amt of AN surgery he does.     Around 70 a year.              So one has to pay attention to their area where they live.
                                                    Cheryl R