Author Topic: Newbie questions  (Read 7527 times)

allegro17

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Newbie questions
« on: January 15, 2009, 12:19:31 pm »
Hi everyone,

I have been browsing around here since I was diagnosed w/ AN last week.  I have done a ton of research and even spoken to some people from this forum through e-mail.  I have a bunch of questions and am hoping I can get some general consensus opinions.

My (brief) story:  29 years old, live in houston but all of my family is in NY, so I would most liekly be pursuing my treatment there.  VERY physically active, professional clarinetist.  My AN is 1.5 in the cpa w/ 1 cm growth into the ear canal.  First noticed some hearing difficulties and onset of tinnitus in 2006, no functional hearing in the affected side as of December 2008, with possibble recent development of some balance/dizziness issues.

I haven't seen many doctors personally yet, but had an appt. w/ a very good neurotolgist in Houston who I liked a lot, and am seeing a rad. oncologist next week.  I have spoken with some doctors or their nurses in NY via phone (Dr. Sisti personally, Dr. Gutin's nurse, and Dr. Golfinos' nurse), and plan to contact also Dr. Post, Dr. Steig/Selesnick.

I have uniformally been told at this point that I could consider both surgery or radiation, but so far only the neurotologist here in Houston is the opnly one who has seen the actual MRI films (said I could definitely consider radiation, the choice is mine, but if it were him he would do surgery based mostly on my age).   I have also been told uniformly by everyone I have spoken to so far by phone or otherwise (Dr. Sisti does both surgery & radiation as does Dr. Gutin) that they normally don't reccomend radiation as the preferred course of action for someone my age.  A family member who works at Brigham and Women's in MA spoke with the head of neurology there who recently did a complete review of AN with his team and they concurred that radiation is currently the best treatment option for this, regardless of age.

Ok, so I am feeling kind of at a loss.  I am not ruling anything out for myself, and am considering endoscopic w/ Shahinian at SBI, as well.

Thus far GK has been mentioned to me but no one yet has mentioned CK.

I know that what I am going through is typical for a newly diagnosed person, and hopefully things will start to clarify.  Part of me wants the darn thing out, part of me wants to do anything possible to avoid surgery provided the rate of success is similar.  I am a professional musician and play clarinet, so facial weakness and paralysis are of great concern to me due to both age and profession.  I find myself slightly concerned about long term unknowns (mainly due to lack of data) that exist w/ radiation, bu also concerned about more immediate risks and recovery w/ surgery.

Given my age and info I've stated, and your personal research and stories, what do you think?  It has been slightly unnerving to me to hear two Dr's very experienced in both neurosurgery and radiation suggest they would indicate surgery for a person my age.  Also, what about the ck/gk debate? Sorry this is so long.  I have more, but I'll wait til later :)

Thanks,

Laura

Kaybo

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Re: Newbie questions
« Reply #1 on: January 15, 2009, 12:31:03 pm »
Hi Laura~
Greetings from one Texan to another!!  I had surgery when I was 25 so I know all of this is so confusing and overwhelming.  I'm sorry your family is not closer to physically support you at this time.  I would love to chat with you if you would like - you can PM me your info and I could call you.  The most important thing I can tell you is that you will be OK and your life WILL go on!  Check out our my blog (address below)if you want to see what life is like for me 13 years after AN surgery! 

K

PS - All my hubby's family lives in Houston so we are there quite a bit - I'd love to get togeher.  Also, there are several people there if you would like some names...
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!

Jim Scott

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Re: Newbie questions
« Reply #2 on: January 15, 2009, 03:35:18 pm »
Hi, Laura:

Welcome and thanks for posting.

Treatment decisions are always very difficult and very personal.  We all want the easiest path with the best results.  Unfortunately, we're all unique and no one form of treatment can be the best for every patient.  Surgery definitely carries risks but irradiation and the subsequent swelling can also present real problems.  That reality, coupled with the cold, hard fact that outcomes cannot be guaranteed, make the final decision that much harder.  What to do?  Research and 'going with your gut' seem to be the best advice.  Endoscopic is fairly new but sounds promising.  I would definitely look into it.  The concerns about radiation on a young person are not without merit but hardly make the option a non-starter.  I would not rule it out, even at 29.  Surgery usually removes the tumor but carries substantial risks, including infections and the possibility of some tumor cells being left behind.  Post-surgical complications can include facial paralysis and certainly hearing loss, although not in every case.  Obviously, there are myriad factors to consider and one can feel overwhelmed with 'too much information'.  This is common.  We usually advise the newly diagnosed to step back, 'take a few deep breaths' and calmly sort out the options, pros and cons and seek consultations with doctors, especially doctors that perform both surgery and radiation, so as to avoid doctor bias toward one form of treatment over another. 

With only one or two exceptions, the folks posting here are not physicians and the one or two that are could not, ethically, offer medical advice to someone who is not their patient.  We offer advice and suggestions based on our experience as AN patients, along with our support based on a hard-won understanding of the situation you find yourself having to deal with.  We've been where you are and we can empathize and, one hopes, offer some useful advice.  However, the final decision on how you'll address your AN will be yours and yours alone because it's your body and you'll have to live with the consequences of your decision.  We'll try to help you make that decision any way we feasibly can.  We're on your side.  :)

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.

Dawn

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Re: Newbie questions
« Reply #3 on: January 15, 2009, 06:05:41 pm »
HI Laura,

I was diagnosed in early december and I had consultation with Dr's Selesnick/Steig.  I am also currently going to set up appt with Dr. Post.

I was very happy with Dr. Selesnick.  His staff was very professional and helpful.  Dr. Selesnick spent a lot of time with me explaining in detail and showing me on the MRI where the tumor was and what his suggestions are.   I am set to go for repeat MRI in March to see if there is growth but he assured me that at any time I wished to have it removed he would do it then.  It is my decision.

Dr. Stieg I found to be very professional and nice although I did not spend as much time with him as he works with Dr. Selesnick and it is Selesnick's office that did the hearing Test and ENG testing and will be doing the MRI so Selesnick takes the lead I guess.

I am going to Dr. Post as another opinion and will then decide who I'd like to proceed with, but I hear great things about both these doctors. 

I hope this helps a little, I know its overwhelming as I am still overwhelmed by it all too.

Good luck to you

Dawn
Diagnosed 12/08...4mm Left AN in IAC...Wait and Watch for now...Next MRI scheduled for 8/09 Doctors not sure if its AN, Lipoma or Hemangioma????

Also diagnosed with Chiari I Malformation - looking into options for that

msmaggie

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Re: Newbie questions
« Reply #4 on: January 15, 2009, 06:07:21 pm »
You will find conflicting opinions in almost any area of this situation. :-\  I couldn't even get drs. to agree on what I had, much less how to treat it.  Do your homework!  Send your MRI to the House Ear Institute for a free phone consultation.  Send your MRI off to lots of drs!  The more you learn, the better you will be prepared to make a decision.  It really does come down to what you think you can live with-truly a gut feeling.  Houston does not have a CK, but is supposed to get one this spring, or so someone told me.

Good luck and keep the questions coming!

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

Sue

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Re: Newbie questions
« Reply #5 on: January 15, 2009, 07:06:15 pm »
Hi Laura,

Welcome to the confusing world of Acoustic Neuroma/Vestibular Schwannoma.  So confusing, they named it twice!  ;)

I don't envy your position at all, especially since your facial muscle's are so vitally important for your career.  I'm so sorry that you are having to deal with this. 

I don't have a lot of advice for you, except for two things.  One is that you might want to check out a CK website which is at www.cyberknife.com.  There you can find out additional info on that procedure, and you can talk to the doctors there.    Also, Standford and Dr. Chang are quite popular for CK treatment.   I also suggest you read this article on how your balance system works.  I found it quite illuminating and realized that I'd had a lot of these minor disturbances long before I ever knew I had an AN. Dizziness is not the only problem with having your balance system compromised. 
 
http://www.hearinglosshelp.com/articles/balancesystem.htm

Best of luck to you in your treatment and eventual recovery,

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

allegro17

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Re: Newbie questions
« Reply #6 on: January 15, 2009, 09:11:46 pm »
Thanks for the welcome and all of the advice so far!

I know the decision has to be mine.  It would really help to know some personal stories of why people choose what they do and what the outcomes were.  Kind of to go hand in hand with all of the medical "statistics".  And to help me sort through my own thought process!

Today I feel like I would be crazy to go through a full craniotomy when I could have either endoscopic or radiation.

Yesterday I felt I wanted it gone and why not go with what has been done for years with a historically backed statistics, especially when that's what the pro's are telling me, at least so far. I guess I need to maybe take a step back now and see where my personal consultations take me, with the MRI's in front of the docs.

Thanks in the meantime for listening and any advice you all might have.

Laura




leapyrtwins

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Re: Newbie questions
« Reply #7 on: January 15, 2009, 11:17:20 pm »
Laura -

as Jim said, AN treatment is a personal choice and IMO you need to do your research and then go with your "gut".  As Jim also said, endoscopic surgery for ANs is fairly new. 

I was given the choice of radiation (GK) or surgery and my neurotologist would not choose for me.  Initially I thought I'd do radiation because it seemed to have a much shorter recovery period, but I decided that I couldn't live with all the followup it required and the waiting and wondering if the AN had died or not in between those followups.  I also didn't want to wait to see what side-effects I would encounter as a result of the GK; I was told it could be 6 to 18 months before I knew what I'd be dealing with.  The thought of a head frame, also freaked me out - which is very strange, since I had a BAHA implant after my AN surgery and now sport a titanium rod that is drilled into my skull.  Go figure!

Although surgery had a longer recovery period, I decided I wanted to know my side-effects "upfront".  I also decided that I wanted my AN removed - I didn't want to spend time wondering if or when it would stop growing.  Being able to sleep throughout the entire procedure was also a plus  ;)

Surgery was a great choice for me and I also found out after it that I had made the best choice, since during the surgery the docs discovered my AN was larger than the MRI had shown.  It turns out that radiation wouldn't have worked well at all for me due to the larger size.

That's just my experience and everyone is different.  What was right for me may or may not be right for you.  Unfortunately each AN treatment comes with it's own benefits and risks, you just need to weigh all of them and make your choice. 

If you haven't already, you may want to contact the ANA and get their informational brochures.  They are written in very clear, simply language and I feel they are very helpful.

I'd also like to suggest that you consult with Drs. Roland & Golfinos.  I've read and heard a lot of great things about them.  Although I live in Illinois and used Drs. Battista & Kazan, if I lived anywhere near NY, Roland & Golfinos would be the guys I'd be signing up with. 

Just my two cents worth,

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

sgerrard

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Re: Newbie questions
« Reply #8 on: January 16, 2009, 12:18:05 am »
Hi Laura,

Welcome to the forum. Please feel free to post questions as much as you want, and don't try to digest the whole thing in a few days. There is time to search around, contact various doctors, and get used to this whole subject.

I am pretty firmly in the "age doesn't matter" camp regarding radiation treatment, so if you want my whole run down on it, just ask. The short version is that there are a number of risks about radiation that are worth considering, but the long term risk of cancer is not one of them. One other comment: many surgeons do not spend their time keeping up with developments and results in radiation treatment -their plates are already full. See what a radiation oncologist has to say about radiation risks, just as you rightly consult a surgeon about surgery.

Eventually your path will become clear; just be patient.  ;)

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.

joebloggs

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Re: Newbie questions
« Reply #9 on: January 16, 2009, 01:10:36 am »
Hi Laura,

I remember the first couple of days after I was diagnosed late last year as being pretty confusing and full on.  I'm 31, active, just really hitting my stride with my career and all that good stuff so it was a bit of a bugger to say the least!  Totally know what you're going through.  You'll come to a decision once you read a lot and talk to a few people post decision etc, but ultimately you will make a decision and you will be the one that makes it not anyone else.  I'm in Australia and was diagnosed in the UK - but from what I read there are some really good docs in NY - as Jan has written.  I decided to come back to Aus and have my op done here so I could be with my family, plus, well - it's just warmer!  I'd rather be sitting out on the deck reading magazines and recovering than sitting inside a rented place in the freezing cold in the UK! 

From what I remember there is someone else on here who is a musician and she's fine - no probs.  Now, I think it's Marci - but I might be wrong... apologies if I am - someone more experienced will know - she's really nice anyway - I'm sure she'll be able to reassure you.

Good luck with your decision, and you know what - time is on your side - it's still small enough for you to have all the options open to you I think - so don't stress too much - it's not like you have to decide tomorrow!  The most important thing before your treatment I reckon is to find out all you can, make sure you're fit and healthy so you bounce back quicker and know that you'll be right! 

As for my decision - I have decided to have surgery - translab.  Why?  Mine is now 2.6cm, and it has a cyst inside it which apprarently (according to the doc) makes me not a good candidate for radiation.  My hearing is pretty rubbish on that side, so although music is really important to me - I'm told I'll get used to the difference, plus trying to preserve the facial nerve is a fairly important consideration and translab surgery gives the surgeon the best view of the facial nerve so they can look after it!

Best of luck

JB
Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

wendysig

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Re: Newbie questions
« Reply #10 on: January 16, 2009, 07:55:49 am »
Hi Laura and welcome,

I don't  have much to add to the discussion since you've already been given a lot of wonderful advice.  Although my AN was small I also opted for surgery for all the same reasons Jan mentioned, so I won't bore you by repeating them. My tumor  was not at all sticky (something they can't predict until they perform the surgery) and hte only facial problems I had were that my right eye (AN side) wouldn't open all the way for about a month.   I also opted for BAHA (had surgery 1/5/09).  What approach are the doctors suggesting if you have surgery and what is the prognosis for your hearing? 

Wishing you luck in the decision making process -- the toughest part of this experience in my opinion.

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!

jerseygirl

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Re: Newbie questions
« Reply #11 on: January 16, 2009, 08:30:41 am »
Hi, Laura,

You have already been given so much good advice! I would like to add that any surgeon, no  matter how brilliant he is, has some very bad outcomes. Radiation is not without risks either: some people have serious side effects which happen after the treatment but no doctor wants to attribute to. However, you are every doctor's dream: young, fit, small tumor. Therefore, your chances of success are optimal.

I live near NY and visited some NY doctors. I also investigated endoscopic version. I ended up at SBI, thousands of miles away and really happy with my choice. I absolutely agree with the advice given: go with your gut and talk to many doctors. The more opinions you get, the more you learn.

Good luck with the decision making process!

                   Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

carter

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Re: Newbie questions
« Reply #12 on: January 16, 2009, 11:37:33 am »
hello and welcome...  i am a 56 year old man that found out about my AN in the fall.  i have completed Ck this week.  i decided on ck based on my desire to try to keep my hearing and to try to avoid any surgery.  ck offered a hope to keep some hearing and the potentila of less down time / effects.

Tulsa has 2 Ck centers. 

my thoughts are that if th eck does not work, i can either do it again of do surgery.  but decided to try the ck first.

3 days now after finishing Ck -- i have worked about 2/3 of the week - got aches and very tired.   i will work a full day today.   it is the best option for me.


carter
Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009

mk

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Re: Newbie questions
« Reply #13 on: January 16, 2009, 07:32:25 pm »
On the issue of side effects of surgery versus radiation, both options come with their set of risks, which are somewhat different. Headaches, "wonky head" , fatigue and balance issues are common with both types of treatment. The issue of hearing preservation depends on a lot of factors, the most important of which is size. The larger the tumor size, the more difficult it is to preserve hearing through surgery. Radiation is certainly advantageous on the facial nerve preservation front, with significantly lower probability of complications (statistics vary, but 2-3% is quoted for radiosurgery, whereas the possibility of facial weakness is significantly higher in surgery patients - a simple polling in this forum could attest to this). On the other hand, radiosurgery presents the risks of swelling as a response to the treatment, which can have quite a few nasty side effects.
So it is all relevant, and an individual decision of what kinds of risks you are more willing to take. This forum is rich with information, and there are many individual stories and outcomes that you can read while you are doing your research. At the end you will figure out what treatment you feel more confortable with.

Here are two other websites that I found useful when doing my research:

http://anworld.com/

and the ANA archive: http://www.anarchive.org/

One of the forum members, Francesco (fbarbera) has a very informative website on his research process, particularly applicable to people of "younger" age:
http://www.myacoustic.org/

Don't be afraid to ask questions, that's what we are here for ;)

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

MAlegant

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Re: Newbie questions
« Reply #14 on: January 18, 2009, 07:39:51 am »
Hi there,
I'm sorry that you have to deal with this.  I am also a musician (but not my day job anymore) and even so, the thought of losing my hearing and my ability to sing was devastating.   As a clarinet player, if you do have to deal with facial weakness it will usually heal and the odds are that even if you have to take a break, you'll get your chops back before long.  My gauge has been whistling. Immediately after surgery and until just recently I could not whistle.  It is now almost back to where it was before and I'm at about 6 months post-op.  I have two very good friends, an oboist and a clarinet and sax player who got Bell's Palsy and recovered and are now back to playing.  This was not a result of an AN, just bad luck.   As far as embouchure goes, I think if you can wrap your head (no pun) around taking a break if need be, you'll be back to playing as well as you were before.  I was very lucky that my hearing was preserved but I had a different type of tumor.  If you do lose hearing, my sense is that you will learn to compensate for it.

I really did not have a choice between radiation and surgery because of the size and location of my tumor but I have had a very good result. I'm still dealing with things but I improve slowly every day.  I've never had to be so damn patient!

PM me if you want to.
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

 


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