55yr old female - 2.4cm AN - freaking out

[annac]

Hi all,
I just found this board and am thrilled to discuss my AN with others that are in the same boat. I"m overwelmed with all the information here and I will read all the posts but I'd like to start by posting my story.

In 2000 (46yrs old) I visited my ENT after noticing a slight hearing loss. After the MRI they found a 1.2cm AN on the right side, pressing on the brain stem. Needless to say I was completely freaked out but luckily had my husband to calm me down and we both did extensive research. As per my ENT, we visited Dr. Michael Sisti at Columbia University in NYC and he layed out all the surgical options, which were horrific. I then sent films to Dr. Jeffrey Williams  at John Hopkins  for review and he suggested radiosurgery. We then found Dr. Gil Lederman at Staten Island University Hospital and decided to have the fractionated radiosurgery there. (he was wonderful and we are sadden at his current situation)

Since 2000 I had an MRI every year till 2006. My hearing has gotten worse but I can still hear, it's mostly word discrimination that is the issue. I have slight tinnitus but have learned to live with it. The tumor showed slight growth each year with a total growth of 2.3cm in 2006. That was 4 years ago when I decided to just live my life and forget about this damn thing in my head and honestly I really did. I dreaded the yearly MRI but that was it. I never gave it a second thought. My life was calm except for some occasions when (6x a year) I had a dull pain that radiates behind my right ear down my jawline. After having an ultrasound of the carotid artery my ENT says there is no signs of any issues except maybe I have TMJ. I found taking some advil helps and thats it. After reading some posts here I have found some people having experienced the same thing... hmmm

This year at my ENT's urging to monitor the AN I had another MRI done and the tumor was measured at 2.4cm. I now have to revisit my options of what to do. My gut is telling me to not do anything but I do need to find an
experienced doctor that can help me. (My ENT doctor, Dr. Scott Kay told me he is getting too old to recommend the best doctor other than the one he told me about 9 years ago) jeesh....

I asked him what the side effects could be if it continues to grow especially since it was pressing on the brain stem. Thats when my stomach began to churn..... you know what they say "ignorance is bliss", boy, were they right. All the anxiety and stress that was there when I was first diagonosed came flooding back. I've had stomach problems since that last visit. It's not that I didn't know what could happen but balancing that with the possible side effects from surgery it seems there is no good end.

Thats when I found this board.
I am comforted with all of the information here and all the good will. I thank you from the bottom of my heart.

I have an appointment with the Dr. Jed Kwartler at the Ear Specialty Center in Berkeley Heights, NJ at the end of the month. He seems to specialize in AN's and did a fellowship at the House Ear Institute. If anyone has had any experience with Dr. Jed Kwartler or has any other suggestions Please! send my way.

Links:
http://www.earnj.com/

[Tumbleweed]

Hi, Annac:

I suggest you get opinions on treatment from at least 3 doctors, one of each who specializes respectively in surgical resection, CyberKnife (CK) and GammaKnife (GK). Or possibly also consult with a doctor who treats with FSR, such as they do at Staten Island University Hospital. Some of the leading medical centers (in terms of experience) for each type of treatment are:
House Ear Clinic (surgical resection)
CK (Stanford University Medical Center)
GK (Pittsburgh University Medical Center) (not sure if I got that name exactly correct)

Doctors at each of these facilities will review your MRI and other test results for free and offer a prognosis and expected outcome of treatment.

Call House Ear Clinic (search Goggle online for their website and contact info) and ask to leave a message for Dr. Derald E. Brackmann. He literally wrote the book on many techniques used today in brain surgery, is an extremely generous and empathetic man, and will consult with you for free by mail (to send your materials) and phone (for followup discussion).

Email Dr. Steven Chang at sdchang@stanford.edu for a free consultation by mail and phone. Dr. Chang has performed over 700 CK treatments at Stanford and is also a neurosurgeon, so you get two different perspectives (and possibly less bias) with one person. Dr. Chang is incredibly generous with his time. My first contact with him was on New Year's Eve; I emailed him and he responded within 2 hours -- on New Year's Eve! He ended up being my treating doctor and I have nothing but admiration and deep gratitude for him.

If you wish to keep all your options open, you must decide on a form of treatment soon. If your tumor grows to over 3 cm in size, most facilities (Staten Island being a possible exception) will not treat with radiation but will insist on surgery. As you know, an untreated and growing AN can eventually paralyze and kill you. The fact that your AN was pressing on your brain stem at only 1.2 cm size indicates to me that it originated in the CPA (cerebello-pontine angle), which is immediately adjacent to the brain stem. You should not wait much longer before seeking treatment.

I am an advocate of watch-and-wait for tumors that aren't growing. Yours is growing. The consequences of an untreated AN growing are far worse than the side effects of treatment, especially for radiosurgery or radiotherapy (fractionated doses of radiation). And the smaller your tumor is at the time of treatment, the less the side effects will be.

It's a tough decision to make, leaving watch-and-wait and seeking treatment. Most of us on this forum have been there before. We know what you're going through. But you can't afford to ignore this growing AN much longer. We are here to support you in your journey.

Best wishes,
TW

[JerseyGirl2]

I have an appointment with the Dr. Jed Kwartler at the Ear Specialty Center in Berkeley Heights, NJ at the end of the month. He seems to specialize in AN's and did a fellowship at the House Ear Institute. If anyone has had any experience with Dr. Jed Kwartler or has any other suggestions Please! send my way.

Hi, annac,

I'm glad you found this forum and hope you'll find it helpful.

Dr. Kwartler spoke at the ANA/NJ workshop on BAHA devices this past April in Berkeley Heights and seemed knowledgeable about BAHAs. I have no idea how experienced he is with acoustic neuromas, but hopefully you'll get a better idea of that at your appointment.

I think just about everyone on this forum would agree that you're doing the right thing by researching your options and preparing to tackle your AN again. You might consider sending your MRI (a CD version is fine) to House Ear for a free phone consult (check their website for details). I noticed on your profile that you live in Central Jersey -- I do, too. I had my translab procedure done at House in January 2008 and could not have been happier with the entire experience. I'll hasten to add that you don't necessarily have to travel to Los Angeles to find experienced AN surgeons and treatment centers. Quite a few posters on this forum have reported on excellent outcomes in NYC and elsewhere in (more-or-less) this geographic vicinity, so hopefully you'll have a number of good options from which to select.

I also hope that you've been encouraged by the optimism and good spirits reflected on this forum. And one more thing -- a group of NY/NJ Acoustic Neuroma patients (some are in the watch and wait stage, others have had surgery and/or radiation treatment) get together a couple of times a year for lunch in New York. Two forum posters -- Debbi and wendysig -- are the organizers and I believe there are tentative plans for a get-together in October. Watch this forum for details! Please PM me if I can help with anything else!

Best wishes as you continue your research and planning.

Catherine (JerseyGirl 2)

[Jim Scott]

Anna ~

Although I've sent you a PM with the information you requested, I wanted to post a 'public' welcome and reiterate my regret that you have to deal with this re-growth, which is always the AN patient's lingering worry, whether we undergo surgery or radiation. 

I heartily agree with the previous posters that you have to address this re-growth.  Fortunately, procedures have improved since 2000 and there are more ways to attack the tumor without necessarily sacrificing facial mobility or generating other post-op complications, although there are still no guarantees - just better odds in your favor for avoiding/minimizing post-surgery problems.

I sincerely hope you can surmount your fears, which are perfectly normal, and move forward with surgery at a facility and with a doctor(s) that you're comfortable with. As you can see, we have lots of members eager to offer information and advice, so please feel free to ask whatever you need to and allow us to be a resource and source of support for you as you deal with this vexing situation.  We know what you're going through and we want to help.  All you have to do is ask.     

Jim

[leapyrtwins]

Hi, annac -

another forumite, who lives in my area, had FSR with Dr. Lederman and also had regrowth.  She subsequently had surgery with Dr. Richard Wiet of The Ear Institute of Chicago and has been tumor free for a couple of years now. 

I'm sure anyone qualified to do AN surgery can remove your AN, but if you want to contact someone who has been in your specific "boat", I'm sure she'd be more than happy to talk with you. 

She goes by the user name zjane and although she doesn't post here often, I'm sure she'd repond to a PM. 

Jan

[jerseyboy]

Hi Annac,
Dr. Kwartler is also my doctor, and I think he's excellent.  He diagnosed my 4mm AN on 5/1/09.  Although it's tiny, I'm mildly freaked out that my symptons, which primarily consist of a rolling headache, are steadily getting worse.  Although my schedule is to get another MRI with Dr. Kwartler in November, I am in the process of seeking a second opinion.  I just think it's the right thing to do.  Below are the details for next scheduled meeting of the ANA/NJ.  Maybe I'll see you there!   BTW, the post by Tumbleweed in this section is outstanding and should be heeded.
Jeff

Date:   Sunday, October 11, 2009
Time:   1:00 pm
Location:   Summit Medical Group
One Diamond Hill Road
Berkley Heights, NJ
Topic:   Fall Meeting - "Acoustic Neuroma: A Time for Surgery?"
Speaker: Philip E. Stieg, Ph.D., MD
Professor & Chairman of the Department of Neurological Surgery
Neurosurgeon-in-Chief, New York-Presbyterian Hospital
RSVP:    Call 609-799-4442 or email ananj@aol.com

More Info:   All are welcome and refreshments will be served

[4cm in Pacific Northwest]

Annac,

One thing I wish I did before my treatment choice was to go to an ANA support group meeting. Learn from my mistakes there- and jump on the opportunity... and go to the one mentioned above.


Others have given you GREAT advice here.

I personally liked the way Dr. Wiet moderated the physician discussion panel at the Chicago symposium as he presented a variety of cases to which we witnessed VERY different answers from different surgeons ... including some pro-radiation and some not. The old school and new school were evident. Regardless it is so important for them to still talk things out for the betterment of the treatment of PATIENTS. This was enlightening for all who participated- young doctors, older doctors and the listening audience. (However if you have brain stem involvement you may not want to go that radiation route and an honest CK or GK surgeon should be honest and upfront on this). I think after you receive various opinions- Dr. Weit (who is more on the Mid to East end of the continent -there) might be a good person to help you weight these out.


The panel was actually a painful experience for me as it took me back to that whole decision making process again, prior to surgery, that was agonizing and freaky. (The old and the new school were bickering over my atypical case and I felt like the rag doll being torn in the middle.)


I initially approached my surgeon ONLY for his opinion of what to do as I explained to him the various opinions I received. I saw him as the more neutral guy from Geneva- so to speak... then I went with him because I knew he had experience in both approaches and in truth I really liked talking to him (and still so.) Some surgeons will only advocate the approach they are most comfortable with- my surgeon seemed the most balanced in his suggestion to me. (There was uncertainty of mine actually being an Acoustic neuroma. If we were 100% certain it was an AN... I would have made a different choice ) After carefully studying his background I called him back and asked him to do my tumor dissection -specifically.

My only word of caution with selecting a surgeon who is also a department head (and in my case also an associate dean) – is they have too many responsibilities and you can get lost in the shuffle with post op care… years down the road. (I am finding this)

Remember it is not just the one surgeon you need to look at (for either microsurgery or radiation) but and entire “team”. You will also have to ask yourself which institution will offer you the best care… even if there are some post treatment issues and you need vestibular or facial physical therapy etc.

If you go out-of-state you will need to know who your surgeon is connected to that can care for you when you get home.  (I suggest you meet that back up in person so you know who they are offering to you) Although my surgeons were great and tackled a very difficult tumor- know that some later follow up care I had was not good… Being away from them and out-of-state has often been problematic. People in my support group who also went out-of-state, to California, but to a different institution than I - have NOT had these same issues as their surgeons had good connections to refer them to -here in our state.

I painfully remember the "What do I do? & "Where do I go?"    stage of my AN Tuma Journey...

BIG BIG Cyber HUGS! (We are here for you and you WILL get through this)

DHM

[sgerrard]

I agree with the advice above, but also notice that while the AN grew quite a bit between 2000 and 2006 ( from 1.2 cm to 2.3 cm), it has grown only 1mm (0.1 cm) between 2006 and 2009. That is not much change over the last three years. Researching your options is a good idea, but I would also think about waiting for another MRI to see if the AN is really still growing. It is possible that it is done and could remain stable now. Watch and wait is also an option at this point.

Best wishes,

Steve

[Adrienne]

Annac,

Just want to comment on the whole TMJ thing.  The symptoms of that and an AN that are affecting the Trigeminal nerve are VERY similar.  In my case, it was a shooting 'electric shock' like pain, caused by the AN.  It was wrapped around my trigeminal nerve.  With TMJ, it's the same nerve that is affected, and sometimes doctors don't know that an AN can cause that type of pain (mine didn't, and neither did my hearing specialist that sent me for the MRI that lead to the discovery of an AN).  You *could* have both, but I'm thinking it's too much of a coincidence and a neurosurgeon (or similar) with experience with this type of thing will be able to give you a better idea.

(hugs).  Sorry you are having this all resurface.  I truly can't imagine........

Adrienne

[CHD63]

annac .....

Others have already given excellent advice, especially about seeking out a nearby AN support group.  I, also, want to welcome you to this forum of supportive, caring AN patients.

My prayers are for you to reach a decision that feels right for you, based on the most experienced physician information you can find.

Welcome!

Clarice

[Vivian B.]

Hi Annac,

Everyone has already provided you with great advice. Not sure how much more I can add axcept to wish you the best in whatever decision you decide and to know that everyones prayers will be with you. You will be fine.

Vivian

[ANcoleader]

Hi Annac,
   I am so happy that you have accessed this website as this is the place to be for the most up to date info......I cannot imagine anyone who has this problem not contacting the group that has the most up to date info.
    I see that several people have told you to contact Dr. Derald Brackmann from House Ear Institute in Los Angeles.  This is definitely where you should be getting the info.  You can go online and see what House Ear does and see the qualifications of the doctors...this should be one of your criteria for anyone that you see or contact as it is easy to have a great website or great brochures, but you want to know qualifications!
    Please do not wait a very long time as damage to your balance and facial can continue.  Dr. Brackmann will talk to you directly...unfortunately when one has radiosurgery they think that the tumor is done and that is not the case. 
    ANA is a great place for support that you need and there are many of us here to talk when you want.  Good Luck and just remember you are still in control to find the doctors. 

[ppearl214]

...unfortunately when one has radiosurgery they think that the tumor is done and that is not the case. 

I would like to respectfully dispute this point as many of us... even further down the road with radio treatments are deemed a "done deal" due to no growth of the AN (goal of the radiotreatments) and are "done".  As we know, even with microsurgery, there is always an unfortunate chance for regrowth (as many post surgical and post radio treatment patients here on the forums can attest).  Unfortunately, it's all part of having an AN, regardless of which treatment choice is made.

thanks.
Phyl

[Kaybo]

I was thinking that the percentage of SUCCESSFUL radiation treatments far outweighs the ones that were not so successful...I had surgery so it is not like I am some cheerleader for radiation...just what I thought...ANY tumor can come back - even if you have the best surgeon and the best outcome!

K

[ppearl214]

I was thinking that the percentage of SUCCESSFUL radiation treatments far outweighs the ones that were not so successful...I had surgery so it is not like I am some cheerleader for radiation...just what I thought...ANY tumor can come back - even if you have the best surgeon and the best outcome!

K

Hi Kay   

In the case of CK and GK, the success rates are well over 90%, hence, not too many surgical removals post radiation as not that many occur.  Rare situations nowadays, although, does happen.