Author Topic: Finding the rigt Dr.  (Read 6098 times)

Craig Otton

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Finding the rigt Dr.
« on: April 28, 2014, 08:06:42 pm »
Hi all,
 I have been diagnosed with a small 3mm an. I lost significant hearing in rt ear. After visit with my ENT an appointment at a hospital in Philadelphia was suggested. I met with a qualified surgeon and explored options. I am currently watching and waiting for 5 months to be re-checked to see status. I cant say I was sold on my first stop. I have done a fair amount of research and understand that this is something serious and requires treatment in the future. I am not so worried about a second opinion but finding the right doc and facility to take care of me. Can anyone who has received treatment point me to the best of the best? Just looking for some help.....
                          Thanks
                               Craig

arizonajack

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Re: Finding the rigt Dr.
« Reply #1 on: April 29, 2014, 12:57:08 pm »
Welcome to the exclusive club that nobody wants to be a member of.

You'll find lots of help and support here.

I also have a small AN and lost all the hearing in the AN ear by the time I was diagnosed. Like you, I spent the first 6 months after diagnosis on watch and wait. At my second MRI it had grown by 20%. I opted for Gamma Knife radiation after considering all the options. It's been 15 months since GK and I've had positive results.

I'm not saying that GK is the way for you to go but it's one option worth considering since the tumor is small and the hearing is already gone.

Check out the ANA main site and look under Medical Resources and Support Groups:

http://www.anausa.org/

Keep watching this thread and you'll get many helpful comments. Many of our members had treatment in your area and will comment about resources.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Jim Scott

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Re: Finding the rigt Dr.
« Reply #2 on: April 29, 2014, 01:41:12 pm »
Craig ~

I can't offer recommendations for a doctor because (a) my neurosurgeon was in Connecticut and, (b) he retired.  However, I will offer the advice that if you chose surgery, seek a physician with extensive experience in acoustic neuroma removals. The neurosurgeon I used had over 30 years experience and, equally important to me, he was a caring man that was as concerned with my post-op quality of life as he was with removing the tumor.   

My debulking surgery went very well and I was spared any real complications.  I followed up - as part of my doctor's treatment plan - with 26 FSR treatments a few months later.  They were uneventful.  Within a few years the remaining AN indicated necrosis. 

My initial diagnosis and surgery were eight years ago.  Today, I'm doing great and my AN experience is a distant memory.  An acoustic neuroma diagnosis is daunting but manageable, with research and dedication. 

I trust this thread will receive some useful replies but I can tell you that the House Ear Institute in California (L.A.) is renowned for it's successful AN surgeries and there are many doctors in the northeast that employ radiation to treat small ANs, such as yours.   

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.

Craig Otton

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Re: Finding the rigt Dr.
« Reply #3 on: April 29, 2014, 03:59:05 pm »
Jim,
Thank you for your insight.

john1455

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Re: Finding the rigt Dr.
« Reply #4 on: April 29, 2014, 06:25:06 pm »
Craig,

Unfortunately, the best of the best will not necessarily be in your backyard and you will need to travel to be treated by the best. The anausa,org site does provide a list of physicians and facilities that meet their criteria that is categorized by physician's last name and state.

From my research I have found that if you opt for radiosurgery, then Dr Steven Chang at Stanford Medical Center in Palo Alto, CA is at the top of the list if CyberKnife (aka CK) is your treatment choice. The CyberKnife was invented at Stanford and they have done more CK treatments than anyone else worldwide. If you choose Gamma Knife, then the University of Pittsburgh Medical Center will be the top facility because that is where Gamma Knife was first utilized for treatment. If you opt for open surgery, then House in LA is the place to go. Closer to your neck of the woods, I understand Georgetown has an excellent facility.

Before you decide which way to go, it would be in your best interest to do a thorough research of each option, the advantages and disadvantages of each, and what potential side effects you are willing to accept. The anausa.org website will also give you a comprehensive description of each treatment option as well as what you can expect from each. Use the "Overview" pull down menu to find this. Other excellent sources of information are You Tube (Google acoustic neuroma, CyberKnife, Gamma Knife, etc) and you will be presented with a large list of videos by real AN patients detailing their experiences and the consequences of their treatment choice. The postings on this forum are also very informative and reading as many as you can will help you decide what road to follow on your AN journey. Especially read the signature box that most posters on this forum provides because it contains valuable information on what they went through. Some sites that helped me are:

http://www.myacoustic.org/
http://www.youtube.com/watch?v=ZbS4K9ENMAg
http://stanfordhospital.org/clinicsmedServices/COE/cyberknife/

Watch and wait will be another option you will come across. The most important thing to remember about that option is if you start to develop symptoms like hearing loss, you will not likely regain it even after treatment. AN treatment, whether it be open surgery or radiation, is weird because pretreatment symptoms usually remain despite being treated. Regrowth can also occur even after surgical removal as well as after radiation.

The most important thing to consider when choosing a neurosurgeon and treatment facility is experience, after all, this is brain surgery and it will be your brain that will be worked on so you don't want anyone with little expertise to treat you. You also want to consult with neurosurgeons who do not treat only one way (only radiation or only open surgery) because you will be given biased information. Your AN is classified as small so you have lots of time to do your research. It may be overwhelming at first but take your time and try not to be discouraged by the sheer amount of information you will encounter. Knowledge is power and the more you find out about ANs, the less intimidating your situation will be.
« Last Edit: April 29, 2014, 06:32:10 pm by john1455 »
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

MusicTracy

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Re: Finding the rigt Dr.
« Reply #5 on: April 29, 2014, 07:30:17 pm »
Craig,

I am in the Philadelphia area myself. As such there are 2 main hospitals that treat AN, Jeff and Penn. I would recommend seeing a dr at both and then make your decision. I have heard positives about both but got 2 different opinions. One wanted to do surgery and the other gamma knife. I ended up choosing gamma knife as my an was confined to the IAC. Feel free to private message me if you would like to talk.

Tracy
7/16/2013 diagnosed with AN in the internal auditory canal
8/30/2013 gamma knife treatment
12/31/2013 developed hemifacial spasms
5/16/2014 BAHA surgery canceled because health insurance would not cover.  Now working with OVR.

sandyinwisconsin

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Re: Finding the rigt Dr.
« Reply #6 on: April 30, 2014, 05:22:18 pm »
Craig,

You have a great doctor right in Philadelphia, Dr. David Andrews of Thomas Jeffesron.  He does both radiation and surgery I believe.
He spoke at the 2013 ANA symposium in LA last summer about radiation.  I didn't go, but you can hear his speech on the ANA
website if you are a member.  He treats mostly with low doses of radiation, possibly 26/27 treatments or less.
I just had 26 treatments done in Madison, WI, and I haven't skipped a beat.  No hearing loss, hair loss, or any losses
to report. 

If you need help with the website, just send me a message. 

Sandyinwisconsin
1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.

v357139

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Re: Finding the rigt Dr.
« Reply #7 on: April 30, 2014, 08:38:25 pm »
Hi all,
 Can anyone who has received treatment point me to the best of the best? Just looking for some help.....
                          Thanks
                               Craig

Hi Craig.  I am in NY and flew out to House in Los Angeles.  I had Slattery and Schwartz for a 3.5cm surgery (not mm), and had an excellent outcome.  So I can recommend them very highly as some of the best of the best.  Traveling was not an issue at all.  You can send your MRI and they call you to discuss for free.  I have also heard great things about Jefferson, and also about Chang for CK at Stamford.  I did not have the option, but for a small tumor I'd certainly want to fully investigate CK, GK, etc.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

leapyrtwins

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Re: Finding the rigt Dr.
« Reply #8 on: May 02, 2014, 09:52:07 am »
Craig,

Unfortunately, the best of the best will not necessarily be in your backyard and you will need to travel to be treated by the best. The anausa,org site does provide a list of physicians and facilities that meet their criteria that is categorized by physician's last name and state.

Not to rock the boat here, but oftentimes some of the best docs ARE in your backyard.  I found many "best docs" in my backyard - and chose one that did an incredible job for me.  I couldn't be happier with my outcome and I never left my home state (Illinois).

The list of docs/facilities that the ANA has on their site is a great resource and a great place to start.  Keep in mind though, that not all docs/facilities want to pay the ANA money in order to be certified by them as a "Center of Excellence" so some best docs are not included on the list.  It's important to find a doc who is very experienced in treating ANs; whether they are on the list or not.

Not to rock the boat again, but 3 mm is a very small AN.  You would be doing a disservice to yourself not to look into radiation.  Lots of people opt for radiation and it's a great choice for them.  Make sure you investigate all your options.

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

john1455

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Re: Finding the rigt Dr.
« Reply #9 on: May 02, 2014, 04:52:50 pm »
Jan, you are absolutely correct! I should have used the word "may" instead of "will" in my post. Dr Steven Chang was in my backyard so I stand corrected.
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

rbc892

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Re: Finding the rigt Dr.
« Reply #10 on: May 19, 2014, 06:28:52 am »
Will the doctors at House still do free consultations? I cannot find a place on the House website for free records review. Has anyone recently sent in their records for a review by Schwartz or Slattery?

cpchri1

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Re: Finding the rigt Dr.
« Reply #11 on: May 19, 2014, 07:21:26 am »
rbc892 link is at http://www.houseearclinic.com/consultation/acousticneuroma
I also has success at House in LA using their free consultation as the first contact with them.  Sent MRI and tests by FEDEX overnight on a Monday and a ENT called me on the contact number I provided on Wednesday, two days later.  I live in a different state too and the Hospital House uses has facilities for families and patients from outside the area.  While I was there I met two men from Tennessee and upper State New York and a princess from Saudia Arabia that had AN surgeries that week.  The young man from TN was my ICU roommate too.  Good experience.
.7 x .6 x .5 cm left middle fossa approach 2/26/14
50% hearing loss left side before 2/26/14
50% hearing loss left side after 2/26/14
No evidence of malignancy
Bell's Palsy left side 15 years before 2014