Author Topic: Newbie from NC  (Read 9443 times)

LisaA

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Newbie from NC
« on: August 05, 2008, 09:00:05 am »
Hi Everyone,

I was just diagnosed last Friday with a 10mm x 5mm AN on my right side.  I'm terrified, but reading the posts on this site has helped a lot. 

What I'm wondering is....how did everyone figure out what to do once they were diagnosed?  I've researched a bit online, but I need to figure out where to go/who to see for surgery.

How do you find out who's the best doctor/surgeon?  So far from what I can tell, the House Ear Clinic in LA is one of the best, the Mayo clinic is also at the top for neurosurgery, and the Skull Base Institute in LA is doing fully endoscopic AN removal.  Does anyone have any opinions on these places?  Any suggestions for other places which are great?

This may sound like a stupid question, but what do I do once I find a place?  Just call?  Do I need to have a consultation with every single place that I'm interested in?  I guess that would make sense.  I'm just really overwhelmed.

Has anyone gone on to have kids after AN surgery?  We were supposed to start trying right away until my ear started ringing and I was put on prednisone.  Now this....

Thanks for any advice you can give,

Lisa
Diagnosed 7/31/08
10mm x 5mm on Right Side
Surgery w/ Dr. Fukushima 9/26
No Surgery-related Hearing Loss
No Facial Paralysis
No Balance Issues (after about the 2nd - 3rd week post op)

Kaybo

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Re: Newbie from NC
« Reply #1 on: August 05, 2008, 09:34:41 am »
Hi Lisa~
Sorry for your recent diagnosis, but you have found the right place!  This is a wonderful group of people that REALLY want to help and support you.  We have all been there, either ourselves or someone close to us, so NO question is crazy or out of the realm of someone's experience.  If you have not done so, you should contact the ANA and get their literature - it is VERY good & written in a way that you can understand. (Sorry Jan - I know that is usually your line for newbies!)  To answer your question about having babies, I went on to have 3 after my AN surgery.  I, like you, was planning to start trying to start a family (literally the next week) when I was diagnosed.  IMO, I did get pregnant a little too soon after my surgery (I had a LOT of complications) but we survived it and I wouldn't change a thing now!  You can check out my blog (www.threecurlygirlies.blogspot.com) to see what life is like for me AFTER having an AN - in my case, it is always CRAZY!!!   ;D  LOL!!!  I would love to chat with you on the phone - I have unlimited LD in the US and would be happy to call you.  If you want, just send me a PM (on left) with your number.
I know that others will not be far behind me in welcoming you and addressing your other questions!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

sgerrard

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Re: Newbie from NC
« Reply #2 on: August 05, 2008, 09:35:53 am »
Hi Lisa,

Welcome to the forum. First piece of advice: Relax and breathe. There is no reason to be terrified, especially with a small AN. This is a great place to find more information, as well as to get support during the process. You have plenty of time to work out a course of treatment.

At House, you can send an MRI and get a free phone consultation. That isn't true at all places, but phone and email are certainly good first steps. You may also want to consider radiation treatment with an AN that size. Several doctors provide free consultations on radiation treatment as well. And certainly you can still have kids, as many as you want.

You will find lots of people here to provide information, support, and friendship. Enjoy your visit.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Omaschwannoma

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Re: Newbie from NC
« Reply #3 on: August 05, 2008, 09:59:43 am »
Hi Lisa,

There are three forms of treatment depending on size of tumor.  #1. Micro surgery, #2.  Radiotherapy and #3.  Watch and Wait.  Depending on your symptoms you could be a candidate for #3 as these tumors grow very slowly, 1mm/year and some stop growing altogether.  Your age has much to do with picking #2 and #1 as well as size of tumor.  I suggest mailing away for the ANA package and the most recent CD's of the Symposium held in Pittsburgh where specialized surgeons in the field of AN put on discussions of treatment forms, updated information on AN's and genetics, etc.  

Whatever form of treatment you must be seen by a doctor who specializes in AN's.  There are many different places one can go with highly qualified doctors in Florida, Boston, Canada, etc.  How does one pick?  Well, there are many things to consider, will your insurance cover you for out of state, the old "gut" telling you after talking with a few doctors is another way most of us chose who and what form of treatment we took.  You are doing the right thing by researching, joining this organization so you can get great information, also do a "search" here for "Kate B" who put together info in helping with the decision making process of treating AN's.  You can call different institutions or email certain doctors introducing yourself and ask them if they will consult for free as some will, House being one off the top of my head.  

Again welcome to our "special club" and sorry you are dealing with this it must've been quite a blow to you and your husband knowing you were trying to become pregnant.  There will be many more people introducing themselves shortly to help out with more information.  

1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Debbi

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Re: Newbie from NC
« Reply #4 on: August 05, 2008, 10:45:00 am »
HI Lisa-

Welcome to our little band of brain tumor folk - sorry you have to be here, but glad you found us.

As others have said, you have time and you probably have options based on the side of your AN.  Hopefully some others from NC will have some recommendations on surgeons in your area.  Also, I definitely suggest sending your films ( a copy!) to House for a free telephone consult - I did that and it was extremely helpful. 

You may also want to check out the cyber knife forum - they have doctors there who will respond to questions and it is a very friendly group.

http://www.cyberknifesupport.org/forum/

I'll second Kay's and Arushi's suggestion to request the info from ANA - it is well written and very informative.  You may also want to talk to some of the people on their WTT list - you'll find that many of us are very willing to talk to other AN patients.

Post any questions you have, or feel free to just vent when you need to - we're here!

Debbi, in NJ

Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

GRACE1

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Re: Newbie from NC
« Reply #5 on: August 05, 2008, 10:46:33 am »
You are so lucky to be in NC; I am 6-7 hours from there.  I had Gamma Knife at Wake Forest University Baptist Medical Center in Winston-Salem.  The doctors and staff were wonderful and my procedure was successful.  They treat a lot of ANs there.  You can mail your MRI to them and one of the doctors will call you to give you a treatment recommendation.  They have a weekly forum where they discuss MRIs that have been sent there.  You can go to their website (www.wfubmc.edu), cllick on neuroscience, then click on Gamma Knife.  You can contact  the Gamma Knife Coordinator - Lisa Wilkins, RN,  at toll-free (866) 713-3228 or via email at liwilkin@wfubmc.edu.  Lisa is one of the sweetest and most helpful people you will ever talk to.  Sorry you have joined our club, but good luck on your journey.
Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

Pooter

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Re: Newbie from NC
« Reply #6 on: August 05, 2008, 12:57:24 pm »
Welcome, Lisa. I'm sorry that you have had to find us, but I'm glad you found us.  I didn't have much of a choice on which method, so I can't be much help there.  With the size and location of mine, surgery was the only option.  The good news (if there is any to be found) is that you have some options.  *grin* I am a male, so I can't help much on the children side after an AN, but I don't see any reason that you can't.

One thing that you can do is search this place for your area and see who also is in your area.  You can then talk to that person first or maybe make an appointment with that doctor.

Again, welcome to the forums and let us know how we can help you...

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

Lamsue23

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Re: Newbie from NC
« Reply #7 on: August 05, 2008, 01:28:21 pm »
Welcome Lisa, you're at the right place to find all the information you will need.  As Steve and the others have said the first thing is to relax and breathe.  Tomorrow, 6am is my surgery at Darthmouth-Hitchcock Medical Center, Lebanon, NH.  I have been following with MRI"S for 1 1/2 years. Now is time to do this.  I wouldn't be as calm as I am today if it wouldn't be for this forum.  After I figured it all out I find I'm not nervous at all, I'm ready.  My daughter from AZ and my daughter from NY is joining me today at the Norwich Inn near the hospital and we will have a family dinner tonight and do a lot of talking.  Please take time to listen to everyone's comments and good luck in your journey with your AN.....

SueL/NH  :)
SueL/from NH
Retrosigmoid Surgery 8/6/2008 DHMC, Lebanon, NH 7.5 hrs.
Dr. Erkmen - neurosurgeon
Dr. Morrisson - neuro-ostology
Loss of hearing 70% in left ear.
Vision and Balance issues...Taste!!

Kaybo

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Re: Newbie from NC
« Reply #8 on: August 05, 2008, 01:43:55 pm »
Good Luck Sue L!
Will be praying for you!
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

LisaA

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Re: Newbie from NC
« Reply #9 on: August 05, 2008, 02:25:40 pm »
Thank you so much everyone - this forum is such a gift!  I'm so glad I found it. Thank you for your comments, they've been so much help -  I've already taken some of the advice given here, and sent my records and a copy of my MRI to the House Ear Clinic for the free consultation.  That is exactly what I needed to overcome the overwhelmed inertia I've been in, and to start taking some action.  Now I'm ready to see which other places will be willing to do the same.  The next thing I'm going to do is get the information from ANA which has been recommended here.

I'm feeling pretty strongly that the surgical route is the way for me.  Is it possible to have middle fossa surgery and walk away with little to no permanent post-operative issues?  I'm really numbers driven - are there any statistical reports out there that anyone can recommend?  I haven't come across anything detailed yet...

Also, has anyone heard of the Skull Base Institue in LA?  The primary Dr. there is Hrayr K. Shahinian.  This place apparently does fully endoscopic AN resection which is sounding just a little too good to be true.  http://www.skullbaseinstitute.com/index.htm

Or has anyone heard of Dr. John McElveen of the Carolina Ear & Hearing Clinic?  http://www.carolinaear.com/index.shtml

Again, thanks SO MUCH.  You don't know how badly I needed the motivation you all have provided.

Sue, best of luck to you in your surgery tomorrow!  I'll be praying for a smooth, textbook surgery for you.
Diagnosed 7/31/08
10mm x 5mm on Right Side
Surgery w/ Dr. Fukushima 9/26
No Surgery-related Hearing Loss
No Facial Paralysis
No Balance Issues (after about the 2nd - 3rd week post op)

Jim Scott

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Re: Newbie from NC
« Reply #10 on: August 05, 2008, 02:27:46 pm »
Hi, Lisa:

Please accept my regrets that you've been diagnosed with an Acoustic Neuroma but also my sincere welcome to the site and the forums.  I can't add much to the comments already offered but I will advise you to seek out a doctor (neurosurgeon/radiation oncologist) that has much experience with operating on AN's.  Although almost always benign, these are not common tumors and every doctor in their respective fields (neurosurgery/radiation oncology) does not have extensive knowledge of how to address them. 

I would suggest finding a physician that specializes in Acoustic Neuromas from your local AMA.  Then, call around.  One office may lead you to another.  Any friends or relatives that may know of a qualified doctor in this field can also steer you.  Once you've decided on a treatment (surgery or radiation), the doctor you choose will likely tell you what hospital he has privileges with and that will be your guide.  Some of our members living in your area can also help via the message boards or a Private Message ('PM').  The search will take time and patience and you'll have some important decisions to make in the weeks ahead but we'll be here to help and support you, when you need us.  Ask any question and don't feel inhibited.  We're all friends with a common bond here and we want to help and support 'newbies' (newly diagnosed folks, like you).  Please let us do so,  Thanks.  :)

Jim   
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.

Pooter

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Re: Newbie from NC
« Reply #11 on: August 05, 2008, 05:58:43 pm »
I may be speaking out of turn, but post-op surgery complications is more about who you go to and the tumor itself (where it is, how big, how "sticky" it is, etc...) than the approach to remove it.  I could be wrong, but I don't think there are any advantages in that regard to going in one way or another, with the exception of hearing loss.. If you have translab surgery then it's pretty much a given that your hearing will be gone afterwards, where with retrosigmoid or middle fossa there's a theoretical chance that it could be saved.  Other complications tho, you cannot tell the difference.  Again, I could be wrong.  With your AN being as small as it is, don't discount radiation (talk to some of those folks too).  You have more of a chance of other issues with radiation than with surgery but again within the radiation therapies available I don't think there is a strong leaning one way or the other.  Talk to a few doctors about radiation and surgery.  They will tell you if placement of the AN makes one or the other more difficult.  You'll find, from what I've read, that many surgeons push for surgery and radiation oncologist and those that do radiation for a living undoubtedly favor radiation. But, the decision is yours alone to make.  We don't care one way or the other, we'll accept whatever choice you make and will be here to help in any way we can.  We all (or most of us anyhow) go through the same type of choice and come to a decision that is best for us based on what we've heard from the doctor, what is important to us, location and size of the tumor itself, etc..  we all decide based on what's best for US..  We expect nothing less from you.  :)  How's that for putting the pressure on?

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

Kate B

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Re: Newbie from NC
« Reply #12 on: August 05, 2008, 07:39:46 pm »
Hi Lisa,
Let me be the next to welcome to the forum.

The diagnosis of a "brain tumor" is terrifying at first until you find out that this benign condition has many treatment options.  You are doing the right thing by going out and trying to find information before making a commitment to a treatment. That period of waiting to see the doctor for a consult can be unnerving.  Know that because it is a benign condition, that you have the time to do your fact finding. With your size tumor, you will have a host of treatment options.

After all my reading, I learned that the treatment choice depends on the
size of the tumor, its location, and your hearing level mostly. It  took me
until September  (and I was diagnosed in May2001 and my treatment was at
the end of November2001) to know what I really wanted to do and where to go.
I considered each treatment option seriously and oftentimes felt overwhelmed
with all of the information. I learned that there is no one *best* way to treat it.  It ends up being an individual decision. (see my thread that guides you through the decision making process).

http://anausa.org/forum/index.php?topic=5786.msg53229#msg53229

Kindest regards,
Kate
« Last Edit: August 05, 2008, 07:42:20 pm by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Glenda

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Re: Newbie from NC
« Reply #13 on: August 05, 2008, 08:12:10 pm »
Hi Lisa,

Welcome to the forum.  You will find lots of help here.  I am originally from NC, living in SC now. I was diagnosed in Jan 08 with my AN.  I too sent my MRI to House and found that even though I have a small AN, because my AN is deep in the canal, I will lose hearing with surgery.  After advice from House to keep my hearing for as long as I can, I am currently in watch and wait.  I just had a 6 month MRI and the finding was only a 1/2 mm growth so I will be able to wait longer.  I still at this point am researching and mulling over what I am going to do.  I feel surgery is what I want to do and even though House is #1 on my list, it will be quite expensive to go there so I am still looking into options.  There is also the option of radiation, gamma knife and cyberknife.  There are lots of others on here who have had these treatments with good results.  What it all boils down to, after you have researched all the options you should come to a conclusion as to what feels best for you.  There is no right or wrong answer and everyone has the option of choosing what they are comfortable with after getting several opinions.  Good luck to you as you get these opinions and make your decisions.  Please feel free to PM me if you would like to talk at any time.

A sister Carolinian  :D
Glenda

Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

stevek

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Re: Newbie from NC
« Reply #14 on: August 06, 2008, 01:43:13 am »
Hello Lisa & everyone else.  My name is Stevek and had a 4cm x 2.8cm x 3.1cm right side AN removed Translab on 6/9/08.  Because of the size and affects, Translab was my only option, I just had to figure out who and where to have it done.  ANA website is a great tool.  My family and I decided on Dr. Todd Hillman @ Allegheny General Hospital in Pittsburgh.  My Neurosurgeon was Dr. Khaled Abdel-Aziz.  Dr. Chen was also called in during surgery because of the difficulty.  I can't explain how awesome these three gentlemen made my experience.  We got their info on the ANA website and I simply called the office, explained the situation, and had a consultation appt. in 3 days.  We traveled over 5 hours and it was well worth it.  As soon as we met them we knew this was the place for us.  I do not wish this (AN) on my worst enemy, but if surgery is required I would highly recommend these folks and their facility.  These guys saved my life.  Mine was large and causing major stress on my brainstem.  My situation moved rather quickly.  Diagnosed 5/14, Consultation 5/25, Surgery 6/9.  Obviously everyone's situation is different.  We moved fast because of the size and its affects.  But depending on your size, you have options.  Everything there from the surgeons, ICU staff, and trauma floor staff made my stay there as comfortable as possible.

Feels good to get the first post off my chest.  This forum is really great.

Stevek
Diagnosed 5/14/08   4cmx2.8cmx3.1cm
16 hr. Translab 6/9/08
Spinal Fluid Leak 6/12, under control & released 6/16
Dr. Hillman, Dr.Chen, & Dr. Aziz @ Allegheny General in Pitt.
2cm regrowth treated with Stereotactic Radiosurgery & released 6/8/11
Dr. Fuhrer, Dr. Chen, & Dr. Hillman @ AGH