Author Topic: Just diagnosed  (Read 6848 times)

usa2010

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Just diagnosed
« on: December 16, 2009, 09:47:13 pm »
Well I am glad to have found this site- as I was really starting to get overwhelmed. I was diagnosed on Monday with a 2 cm Acoustic Schwannoma. I am scheduled to meet with Dr. John Ryzenman in Columbus, Ohio on Christmas Eve day for treatment planning. I have been researching this like crazy and still just don't know what to think. I am an active duty soldier, father, and husband- who just doesn't know what this all really means. If anyone knows anything about the doctor I am scheduled with or an information that would be helpful- I'd sure appreciate it.
Retrosigmoid 1/26/2010 Dr. Tew and Pensak
No facial Paralysis. The verdict is out on the hearing.

epodjn

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Re: Just diagnosed
« Reply #1 on: December 16, 2009, 09:57:50 pm »
Let me be the first to welcome to you to our little group. We all remember how overwhelming it is in the beginning, believe me! Your tumor is still on the smallish side and these are genereally slow growing so you have time to do all the research you feel you need. You are in the size range to have either radiation or surgery. Check them both out. We have several members of the service on this group. I'm sure you will be hearing from them. I'm not from your area so haven't heard off your doc but there are many good ones out there. Just make sure whatever avenue you chose to go with a doc with lots of practice. This is not a good time to go with a newbie doctor! Go with the most experience doc you can get.
Just as a side note, thanks for your service to our country! My son is army so I know the sacrifices you give each day!
Julie
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

leapyrtwins

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Re: Just diagnosed
« Reply #2 on: December 16, 2009, 10:33:07 pm »
usa -

Dr. Ryzenman used to work at the Ear Institute of Chicago - he had completed his fellowship through Northwestern University and was working with them about the time I had my AN surgically removed (May 2007).  My doc is one of the partners of this group and it's an excellent group.  Dr. Ryzenman and a Dr. Arnold Rivera were both assisting with surgeries at Chicago Ear at the same time.  Dr. Ryzenman moved on to his own practice in Ohio and Dr. Rivera moved on to a position with the military (Army I believe).  Dr. Rivera was the one who did my fat graft.

Anyway, I met Dr. Ryzenman at the ANA Symposium in Chicago this past August and he was very pleasant and seemed like a great doctor.  I don't know how long he's been removing ANs though, so that's a question you want to ask him.  As the ANA stresses, you want someone who has a lot of experience when it comes to treating your AN, whether you decide on surgery or radiation.

Have you thought about consulting with Drs. Tew & Pensak in Cincinnati?  You'll find their info on the main page of this website under "Medical Resources", Physician Directory.  Although the ANA doesn't endorse any doctors - the ones list in the directory paid a fee to be listed - I know that Drs. Tew & Pensak have many years of experience.

I'm not at all saying that Dr. Ryzenman isn't a good choice, but as Julie noted, you should go with the most experienced doc you can get.  So I just want to encourage you to consult with a few doctors before making up your mind.

I also want to echo Julie in saying thank you for your service to our country.

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

Pooter

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Re: Just diagnosed
« Reply #3 on: December 16, 2009, 10:48:39 pm »
Welcome to our exclusive club. I can't offer any advice on the doctor being in Houston, but I can say thank you for your service. My father was Army during Vietnam.

Thanks,
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/

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pjb

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Re: Just diagnosed
« Reply #4 on: December 17, 2009, 10:15:46 am »
I was advised by my GP to do a lot of research and find the best doctors who specialize in this field and that most of the AN's are slow growing so you have some time to research...

My prayers are with you,


Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

CHD63

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Re: Just diagnosed
« Reply #5 on: December 17, 2009, 01:47:58 pm »
Adding my welcome to this forum.  You have come to the right place for support and lots of caring thoughts.

I live three hours from Columbus.  However, I went 5 hours south to Duke University for my surgery ..... where Dr. Takanori Fukushima has done 100s of AN removals ..... I had excellent results.  Like Jan, I saw Dr. Ryzenman at the Symposium and was impressed so he probably is just fine.  I would certainly find out how many ANs he has treated, however.  This is one time when experience really does matter.

Let us know how you are doing and ask away with any questions.

Thanks for all you are doing as an active duty soldier!

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

usa2010

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Re: Just diagnosed
« Reply #6 on: December 17, 2009, 02:17:40 pm »
Thanks for the replies and information. Jan- I appreciated your information regarding Dr. Tew. I spent some time researching him and spoke with his office this morning. They were able to book me for a consult on Monday the 21st. I am hoping that my insurance (Tricare Prime Remote) is able to move things along and not be a problem.  When I originally went for the MRI , I just expected to be told I had spent to much time on the firing range- and I had tinnitus- this is a whole other ballgame. Will just be glad to have more information and a plan. Thank you again for the replies and no need to thank me- it is a great honor to serve this great nation.

Retrosigmoid 1/26/2010 Dr. Tew and Pensak
No facial Paralysis. The verdict is out on the hearing.

DR

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Re: Just diagnosed
« Reply #7 on: December 17, 2009, 03:05:18 pm »
I have been researching this like crazy and still just don't know what to think. I am an active duty soldier, father, and husband- who just doesn't know what this all really means. If anyone knows anything about the doctor I am scheduled with or an information that would be helpful- I'd sure appreciate it.
First, let me join the others in thanking you for your service to our country.  It is people like you that protect our freedoms by your willingness to make incredible sacrifices.

Second, let me welcome you to our group.  You have joined an exclusive club and, thankfully, have found a great resource at this forum.  I can honestly say that this place was the single most important factor in helping me understand what was going on, calm my nerves, research my options and ultimately make a decision on treatment.

Finally, you are well on your way, even if you don't recognize the journey has already started.  IMO your three most important things are (in no particular order) 1) Research; 2) Research; 3) Research.  If possible, don't limit yourself to a single consult.  Research all your options, look at the pros and cons of each, speak to physicians and patients, and then make your decision based on what YOU feel is best.

There is a list of questions the ANA has available to ask doctors during consultations.  I don't have the link right now, but I will try to find it ASAP.  If someone else has it please feel free to post it!

- Dennis
AN right side 12mm x 9mm x 9mm
Middle fossa surgery 11/4/09 at House (Dr. Brackmann/Dr. Schwartz)
Tumor removed, no facial issues, hearing intact!
http://denvstumor.blogspot.com/

"The greatest trick the devil ever pulled was convincing the world he did not exist."

Sue

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Re: Just diagnosed
« Reply #8 on: December 17, 2009, 03:08:41 pm »
Hi USA,

Sorry you had to join our club.  Remember, depending on the location of your 2cm little unwanted friend, you may also choose to be treated via Cyber Knife/Gamma Knife .  And since you have one about the size as mine, I was told to treat it sooner rather than later.  It's in the middle (size-wise), and you don't want it to get too much bigger, although these grow, normally, at a very slow rate.  Sometimes, though, they can speed up and surprise you.  Please get a balanced view of all of your options.  Talk to experts in all the fields.  Weigh and balance the pros and cons of each of your options.  Understand that sometimes going with your gut is a good thing.  Do not rush into something you are not fully comfortable with.  Make sure your doctors are up to date on the latest information and when your surgeon tells you that you have a greater risk of developing cancer after radiation treatment, remember that you also have a risk of being run over by a truck on your way to the hospital.  I am not against a surgical option at all, I'm just against surgeons subtly steering you in their direction with information that seems a bit biased.  You can visit www.cyberknife.com if you wish to discuss or learn about CK.  Everybody is different and no option is perfect for everybody. We wish that were different.  How much easier would this all be if there was only one treatment that would do the trick.  A lot of the treatment options have to do with size of the tumor, location of the tumor, your symptoms and hearing levels.  

I wish you the best of luck with your treatment and eventual recovery. :)

Our nephew is a Marine, stationed in Okinawa.  

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

lori67

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Re: Just diagnosed
« Reply #9 on: December 17, 2009, 03:16:21 pm »
USA -

I had Tricare Prime Remote also when I was diagnosed with my AN (husband is AD Navy).  In my opinion, you're better off having Remote than regular Prime in this case because you'll have more choices of doctors, rather than them telling you who you have to go to.  My surgery was paid for in full, although I had a catastrophic co-pay for the neurosurgeon because he was out of network.  I figured $1000 was actually a pretty good bargain for brain surgery and this guy came highly recommended so I wasn't willing to go with an in-network guy.  There's a whole thread on Tricare under insurance issues that you might want to check out when you have a chance.

I don't have any information on the doctors you mentioned, but it sounds like you've already gotten some good input on that.

Good luck with your search for information and thank you for your service! 
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Jim Scott

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Re: Just diagnosed
« Reply #10 on: December 17, 2009, 05:14:33 pm »
USA ~

I don't have anything substantial to add to the comments already posted but I did want to offer you my personal welcome to the ANA website Discussion Forums. 

You can easily be overwhelmed by all the information available regarding acoustic neuromas but if that happens, just 'step back' and 'take a breath'.  As others have indicated, you do have options and although this benign tumor should not be ignored, you don't need to rush into anything.  We're here as a place to ask questions, add your own comments, vent or whatever you need to do at the moment.  We're all AN patients in some sense and understand what you're going through.  Consider yourself a part of the family.

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.

CHD63

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Re: Just diagnosed
« Reply #11 on: December 17, 2009, 09:04:45 pm »
Dennis .....

Here is the link for the questions the ANA has for asking a potential treating doctor.  http://anausa.org/questions_for_physician.shtml  I used these not only to ask my neurosurgeon but to help me better understand the important aspects of this whole journey.

Hope it helps.

usa .....  If you haven't already done so, I would definitely contact the ANA for the packet of information.  It is extremely helpful and reassuring.

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

Kaybo

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Re: Just diagnosed
« Reply #12 on: December 17, 2009, 09:17:57 pm »
USA~
Just wanted to give you any welcome from TEXAS!

K   ;D
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!

cyrmom2

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Re: Just diagnosed
« Reply #13 on: December 17, 2009, 09:37:52 pm »
Welcome from another Buckeye!

Cyndi
diagnosed 7-27-09 4 cm CPA
12 hr translab 8-25-09
Dr Chicooca & Dr Welling at OSU/The James
sliver of tumor remains on brain stem
left SSD & facial paralysis (was 6/6, 2-3/6 at 9 weeks, 1/6 within 4 months) 6 month MRI on 3-17-10.

 


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