Author Topic: Newbie who also could not find a post button  (Read 11874 times)

skamper

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Newbie who also could not find a post button
« on: December 15, 2009, 11:02:08 pm »
I just found out this morning that I have a 2.4 cm (large acoustic neuroma).  I have been having right sided facial numbness for a few months now.  It started out as just being my lips were numbs and has moved up the right side of my face.  It feels like I've been injected with novicane.  I don't go to the neurosurgeon until Friday and now I am freaking out.  I've tried looking up things on this, but it scares me even more.  My reading of my MRI also says is right cerebello-pontine angle cistern compressing brachium pontis and lateral side of the belly of the pons extending into and filling the right internal auditory.
Does anyone know if this will require surgery or is there alternate options?  I'm just having such difficulties not knowing until Friday.  I am already a worry some person and know I'm scared to death. 
If anyone can please help or ease my mind in any way that would be awesome.  I am only 40 years old and can't believe it.  I don't think I have any hearing loss as of yet, I am off balance a lot though and have many headaches.
Thanks in advance for any support.
Sincerely,
Susan
Diagnosed 12-09
AN right side 2.3 x 2.6 x 1.9
97% balance loss, minimal hearing loss
Surgery 4-2-10 at Methodist Hospital, Dr. Long and Moore
1.5 cm tumor left on 7 nerve.  Gamma knife 1-2013

notnowkato

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Re: Newbie who also could not find a post button
« Reply #1 on: December 16, 2009, 01:02:47 am »
Dear Susan,

Sorry you have received this diagnosis but welcome to the forum. I am also a newbie and will have treatment next year. It's normal to be scared, I know I am, along with sad, angry, etc. but this forum is a great place to find support either through posting or just reading and the more I learn the better I feel.

I believe that at 2.4cm you may well be a candidate for radiation/radiosurgery as well as microsurgery. Kate B and others have a great website that helps explain the different treatment types   http://anworld.com/

There are many people on this forum with AN's a similar size to yours, some of whom have had surgery and others radiation. If you look at the signatures of people who are post-treatment you can often see what their decision was. Hopefully some of them will chime in with their thoughts, but you should speak to specialists from each area who can look at your scans, before making the decision which type of treatment is right for you.

Good luck on friday with the specialist,
Kate



opp2

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Re: Newbie who also could not find a post button
« Reply #2 on: December 16, 2009, 01:30:32 am »
Hang in there Girl. Friday isn't that far off. Welcome to the forum. Sorry to have to say that, but also happy you found the forum and the folks here.

I was diagnosed in April with a 2.9 cm AN left side. Minimal hearing loss, numbness in the left lip, spread to the face, tingling left tongue, my headaches have subsided over the past 6 months, but I do have balance issues as well.

Kate is right, hang out, read what you can. The more you know going to the doctor the better off you are. I've postponed surgery twice while I continue to search for the right answer. You will know it when it comes to  you.

In the meantime, know that these tumours grow slowly as a general rule of thumb. You have time. I'm 44 and I have a 7 year old girl and a 4 year old boy. The last thing I thought this was, was a tumour. We all know or have felt at least some of what you are feeling right now. You are among friends here. Welcome.

Nikki
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

leapyrtwins

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Re: Newbie who also could not find a post button
« Reply #3 on: December 16, 2009, 07:01:28 am »
Hi Susan and welcome to the Forum  ;D

An acoustic neuroma of your size usually means that you have a choice of radiation (limit is generally 3 cms) or surgery.  However, the location of your tumor will have some bearing on this.

You should contact the ANA for their informational literature - it will explain a lot of things about ANs and in very easy to understand terms.  The ANA will also send you a WTT (willing to talk) list with contact information for others who are willing to talk about their AN experience.  The Forum is a great resource also, so please don't hesitate to ask us anything.

While 40 is young, it's a common age for people to be diagnosed with ANs.  I was 45 1/2 at the time I was diagnosed.  It's also natural to be scaried, worried, nervous, and frightened, but please know that you'll get through this.  We're here to help.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

anissa

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Re: Newbie who also could not find a post button
« Reply #4 on: December 16, 2009, 08:34:16 am »
Hi Susan and welcome :)  I'm sorry to hear of your diagnosis but you're definitely in the right spot for help and support.  I had a 2.1cm AN and had it removed last April via a Trans-lab surgery that removed my hearing in that ear with it.  Thats not the only option though so read as much as you can.  Somewhere around here is a list of questions that are helpful to ask your doctor when you see him/her for the first time.  I'll do a quick search and see if I can find it.  I am also 40 this year and I have four little kiddos (ages 6, 6, 4, and 1-1/2).  Take a deep breath, you're among friends.   :)
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

CHD63

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Re: Newbie who also could not find a post button
« Reply #5 on: December 16, 2009, 08:45:25 am »
Hi Susan .....

Adding my welcome to this forum of many caring, supportive friends.

As others have said, with the size AN you have, you should have some choices for treatment.  As Jan said, the location of your tumor is as much involved as size in treatment options.  Do your research and at some point, you will know which option is the best one.  I do not know where you live, but I would urge you to seek out the best medical professionals you can ...... ones with much experience with ANs specifically.  Because ANs are relatively rare, not all neurosurgeons or ENTs have seen very many of them.  You want someone with extensive experience, even if it means traveling out of state (or country).

Ask any and all questions ..... that is why we are here ..... and do send for the ANA materials, they will help greatly with information and reassurance.

Best thoughts.  Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

wendysig

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Re: Newbie who also could not find a post button
« Reply #6 on: December 16, 2009, 10:04:27 am »
Hi Susan,

I wanted to extend my welcome too, but say I'm sorry you need to be here.  The AN diagnosis is a frightening one, but you've found a wonderful place for information, understanding and comfort.  Feel free to ask any questions or just vent when you need to.  At 2.4 cm you would probably have the option of stereotactic radiosurgery or microsurgery, but as Jan pointed out, options can sometimes be limited based  on the location of your AN.  The best person to answer that question is your doctor.  The information packet you can get from ANA (also mentioned by Jan) will answer a lost of your questions, as well as giving you questions you should ask whomever you see for an opinion.  It is a good idea to see surgeons as well as radiation oncologists, as well as doing your own research so that you can get a really good understanding of the pros and cons of each type of treatment in order to make an informed decision.  Please feel free to ask any questions or just come here to vent, we are here to help however we can.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

anissa

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Re: Newbie who also could not find a post button
« Reply #7 on: December 16, 2009, 10:16:32 am »
Here are the questions, right off of the ANA website (here):  http://www.anausa.org/questions_for_physician.shtml
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

Mickey

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Re: Newbie who also could not find a post button
« Reply #8 on: December 16, 2009, 10:24:18 am »
Hi Susan! As you can see there are many here with the same type of AN you have. At 2.4 according to guidlines your AN is not under large but is considered medium. Watching + Waiting for me and meeting so many people with AN`s who have been treated with todays technology I`ve seen so many favorable outcomes. Take your time and do your research then make your choices. Everything is going to be alright! Best Wishes, Mickey

Pooter

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Re: Newbie who also could not find a post button
« Reply #9 on: December 16, 2009, 03:32:08 pm »
Susan,

Welcome to our little exclusive club!  You've found the right place.  As others have said, it's perfectly normal to be freaking out a little until you get more answers for your exact situation.  Heck, I was conviced I was going to die when I first found out.  The people on this forum went a LONG way to reassure me that I wasn't going to die and in fact I'd go on to have a normal, happy, productive albeit a bit more adventurous life.

As others have said, being at 2.4 cm, then the size would put it in the "Medium" category.  With generally speaking the limit for radiation being 3cm, then you should be well within the range to do that but it depends now on the location.  Talk to the doctor on Friday about what options he thinks you have.  Keep in mind that generally, surgeons will recommend surgery and radiation doctors will recommend radiation.  That's what they know and are comfortable with.  I would suggest getting several opinions (from surgeons and radiation doctors) that specialize in AN treatments.  Experience is key.  Find out how many others they've treated for Acoustic Neuromas.  You don't want to be someone's guinnea pig, if you know what I mean.

Also, you can get a free phone consultation from House Clinic in LA.  They're primarily surgeons, however they're regarded as some of the best in the country for AN surgery.  Here's the info:

Send the MRI scans by express delivery (be sure that you are able to track the package) to:

House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057

You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or fax a House Ear Clinic physician at:

Telephone: (213) 483-9930
FAX: (213) 484-5900


Things will definitely be okay..  We're here to help you get to that place (and beyond)..

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Jim Scott

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Re: Newbie who also could not find a post button
« Reply #10 on: December 16, 2009, 04:54:04 pm »
Hello and welcome, Susan ~

I'm sorry you have to deal with an acoustic neuroma diagnosis but I'm glad that you found the ANA website and these discussion forums.  You'll receive tons of good information and advice here from folks who have been exactly where you are, today:  diagnosed, worried and a bit frightened about what will happen.  The good news is that you have a benign tumor that is treatable.  Whether that treatment comes in the form of surgery or radiation is yet to be known but your consult on Friday should give you some direction.  Please don't take as 'gospel' what any individual doctor may tell you is the 'best' treatment for you.  Doctors sometimes harbor biases.  Those that prefer surgery will find lots of reasons why you shouldn't consider radiation.  Some will use your relative youth as a rationale.  Those physicians that prefer radiation treatment for ANs will likely discourage you from undergoing surgery, listing all the possible problems that could ensue, such as infection.  Both schools have some valid points and both have some skewed information that supports their bias.  Fortunately, there are many doctors that treat acoustic neuromas that will honestly present both radiation and surgery as viable choices.  I hope you'll find doctors like that.  Meanwhile, please consider these forums as a resource and ask any question, no matter how seemingly insignificant.  We're not doctors but we do have a wealth of collective practical experience dealing with an acoustic neuroma and it's inherent challenges.  

You've already received much information and advice on this thread and I won't attempt to add much more to it, except to advise you to 'take a breath' and try to focus your energies on what you'll want to ask the doctor (write it down) and that, if treated, an acoustic neuroma is not fatal and life can go on pretty much the same once it has been treated.  Although some lifestyle changes are inevitable, in most cases, they're relatively small.   In some ways, you'll probably be a better person once you've gone through your treatment, only because an acoustic neuroma can often force us to rise to the occasion and deal with something that is a type of test of our character.  Of course, there are probably easier ways to build up our character, but this is what you have to face and although it may present some challenges, it can be conquered.  Most of our members have done so or are in the process of doing so.

We're here to help, advise and support you as much as we're able.  Consider this website/forum a safe harbor as you go forth to do battle with this intruder.  

Jim
« Last Edit: December 16, 2009, 05:25:48 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

DHJ

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Re: Newbie who also could not find a post button
« Reply #11 on: December 16, 2009, 05:17:53 pm »
Hi Susan   My AN was 2.2CM in September and has shown some slow growth.Currently I have been in wait and watch mode for 2 years now and will eventually need treatment. The Doctors at Massachusettes Eye and Ear Infimary  (MEEI)  have been great. Find experianced doctors and consider your options. I tell family and friends that my tumor is not malignant and that I will be OK and so will you.    Peace Dave J
3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear

skamper

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Re: Newbie who also could not find a post button
« Reply #12 on: December 16, 2009, 10:19:34 pm »
Wow~thank you so much to everyone who has written to my post!  This was way more than I ever expected.  I know Friday will be here before I know it and I will get some questions answered.  I will look into the questions I need to ask, and I will look into different avenues of treatment.  I work at an Oncology clinic who has two radiology oncologists.  Would they be helpful in this matter? 
I live in Nebraska and my first appt is with Dr Doug Long and Midwest Neuro Center.  Does anyone know of this doctor or center?
I promise to keep everyone posted and will continue to read other posts on this amazing forum.
Thanks again to everyone and wish me luck.
God bless and peace,
Susan
Diagnosed 12-09
AN right side 2.3 x 2.6 x 1.9
97% balance loss, minimal hearing loss
Surgery 4-2-10 at Methodist Hospital, Dr. Long and Moore
1.5 cm tumor left on 7 nerve.  Gamma knife 1-2013

Pooter

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Re: Newbie who also could not find a post button
« Reply #13 on: December 16, 2009, 10:31:25 pm »
Susan,

radiation oncologists definitely will be of help. If they utilize gamma knife, cyber knife, FSR, proton beam or any other radiation method specifically in the treatment of acoustic neuroma's then they will be of particular help. If they aren't experieced in the treatment of ANs, then they still may be of help with question about the procedure, radiation types, realistic expectations of possible outcomes, etc. Definitely ask them about things.

Friday is around the corner. Good luck and keep us updated.

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

skamper

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Re: Newbie who also could not find a post button
« Reply #14 on: December 16, 2009, 10:43:29 pm »
Thanks, I will be keeping my fingers crossed and my mind open for any options.  I will try and research tomorrow and have my questions ready.

It is so nice to have this forum to talk to people who are going through this or have already been through this.  It felt like a knife in my back when I found out.  After all, who would guess it would be a tumor.

 I will keep everyone updated.
Sue
Diagnosed 12-09
AN right side 2.3 x 2.6 x 1.9
97% balance loss, minimal hearing loss
Surgery 4-2-10 at Methodist Hospital, Dr. Long and Moore
1.5 cm tumor left on 7 nerve.  Gamma knife 1-2013