Author Topic: new to the club  (Read 4606 times)

gregsh

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new to the club
« on: May 03, 2007, 07:16:53 am »
Hello,

Like the subject says, I am new to the the AN club.  I was daignosed about a month ago with a 2.5cm AN on my left side.  I have no visible symptons other than 40% hearing loss in my left ear along with some tinnitus.  I have been told I have balance issues but my body is doing a good job of compensating.  I am 37 years old and am in good health otherwise.

This website and forum have been a blessing.  It has been so good to read about peoples experiences, opinions and outcomes concerning everything from doctors to insurance questions.  I am currently exploring all of the treatment options available and am currently consulting multiple doctors.

I had my first consultation with Dr. Antonelli @ U of FL yesterday.  He was very knowledgeable and professional.  I was displeased at his reluctance to discuss radio surgery as a possible treatment.  He definitley recommeds surgery and told me that there was no chance that my hearing could be saved in the affected ear.  His words were:  "Hearing preservation is not an option that is on the table at this time."  This seems contrary to what I have read on this site.  I still have 60% hearing in my bad ear and I would like to try and save as much as possible.  Have I lost my mind?

I am now in the process of trying to see Dr. Mattox at Emory in Atlanta and Dr. William Friedman @ U of FL in Gainesville.  It seems that both of these doctors have experience with radio surgery.  I fully understand the microsurgery method of treatment (and it's potential hazards) and I am now on a mission to learn all I can about radiation.  Again, have I lost my mind?  Has anyone flown to California and gone to Stanford and consulted with Dr. Chang?  It seems extreme to fly all the way to the west coast but I am willing if push comes to shove.

Thanks to everyone for the support and information.   :)

Obita

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Re: new to the club
« Reply #1 on: May 03, 2007, 07:38:39 am »
Hi Greg - welcome!!

There are many, many people on here that have been treated by Dr. Chang.  Do an advanced search on here for him and you will get many hits.  Same goes for the other doctors.  I have seen their names on here too.  Trying to save your hearing is a very realistic goal.

My AN was left side, 2.5 also.  I opted for surgery because I could not stand the pressure in my head.

Good luck in your search for treatment Greg, Kathy

 
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

flier58

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Re: new to the club
« Reply #2 on: May 03, 2007, 08:51:04 am »
Hi Greg,
I am one of those "crazies" that flew to SFO from Chicago to be treated by Dr. Chang.  My reasons (to go that far): he is one of the most experienced and knowledgable surgeons that does both micro- and radiosurgeries. It happened to be very inexpensive to me (no, Iam not Paris Hilton in disguise ;D ::)).  I had to hide the real reason to fly for my son who had to go with us (he wanted to see the ocean so we made it look like this is the reason we go there).  Otherwise I would go to OKC or Palm Beach (FL) see www.cyberknifesupport.org  which has 2 absolutely wonderful docs. answering questions about GK and CK in particular). My insurance paid for the treatment
I asm not sorry I went to see Dr. Chang, who is very passionate about his job, has an extensive experience regardless his relatively young age (he is not exactly a teenager, he is just young for a very experienced  neurosurgeon).  I loved the team that worked with him and the weather in SFO is better than Nov. in chicago :D.  I keep in touch via e-mail but for time being I had rather minor issues to discuss with Dr. Chang.  My MRI will be in May and I am going to send A CD to SFO for evaluation.  My life was not affected by the treatment (so far) and I'm happy with my decision (so far).

Now, my AN was 2cm. when treated with CK.  I don't know if my decision would be the same if it was larger. If I went surgery way I think I would stay closer to home as follow up is usually more intense due to incision, bigger possibility of CSF leak and other stuff that is possible with craniotomy.
We are sorry you had to join our club but since you were kind of forced to join - welcome.  People here are true life savers regardless of their choices of treatment.  I am proud to be a member of this family.
Regards,
Flier58

ppearl214

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Re: new to the club
« Reply #3 on: May 03, 2007, 09:48:52 am »
Hi Greg and welcome! :)

Flier gave fantastic recommendations for you and I have to agree.  If you are interested in Chang at Stanford, he is top notch when it comes to all protocols, plus his experience with Cyberknife.

You should be able to find a lot of info here on the site, in the "Microsurgery" and "Radiosurgery" forums... just take your time ready as sometimes, it can seem a bit overwhelming.

Again, welcome!
Phyl
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Mark

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Re: new to the club
« Reply #4 on: May 03, 2007, 10:07:41 am »
Greg,

I would certainly echo Flier's and Phyl's comments. I was also treated by Dr. Chang, but live in the bay area, so didn't have the commute  ;D. During my treatments there were people who had traveled from the far east Asia as well as elsewhere in the US. While I think the world of Dr. Chang, I would also have confidence in  the CK centers located in Florida such as Dr. Spunberg at Palm Beach.

I can understand some of your "displeasure" with Dr. Antonelli's responses. Relative to hearing, perhaps his surgeon perspective colors his comments somewhat. hearing preservation in surgery is size related whereas it isn't in radiosurgery. Most people who undergo surgical resection and are fortunate to maintain hearing have very small AN's ( < 1cm). Generally speaking, AN's in excess of 2 cm have a very low probability of retaining usable hearing in surgery. Radiosurgery statistics are uniform regardless of size treated.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

kat

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Re: new to the club
« Reply #5 on: May 03, 2007, 11:31:20 am »
Hi Greg

Welcome to the club . My first consultation after my diagnosis was pretty similar to yours . I was told that I had balance issues and that my hearing was not worth saving . Surgery was the only option and only negatives vere briefly discussed about radiosurgery .
I was puzzled since I had no balance issues and my hearing was about 50%. I felt that I had been subjected to hard sell on surgery and decided to get a second opinion about having GK . It is now over two years after my zap and there has not been any deterioration in my hearing nor any balance problems to speak of. Alll in all I am pretty happy with my decicion since my last MRI showed that my AN was shrinking slightly . I wish you good luck in your search for treatment  .

Regards Kat 
2.2 cm AN diagnosed July 2004 . GK at  the Royal Hallamshire
Sheffield UK in April 2005 2nd MRI in December 06 showed signs of the AN shrinking and MRI in FEB 08 showed no change . SO FAR SO GOOD .

Boppie

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Re: new to the club
« Reply #6 on: May 03, 2007, 01:02:37 pm »
Greg, I had a 2CM as you can see below and had surgery.  While I have no regrets with my decision and moved ahead confident to get on with my life, I know something now that I didn't fully face in the beginning.  Having already lost 65% of my useable hearing to the AN seemed fairly serious.  And since I am 65 now, I knew I'd lose this remainder of the hearing and be able to deal with a hearing aid.  But loosing all of the hearing in the affected ear could mean loosing the ability to discern directionality.

I would say today...depending on age, health, lifetime of work to come, and gut feeling, one should consider effectively treating the tumor in a way that preserves the face and hearing if at all possible.   

Don't lose sight of the fact that the options belong to you.  Choose an option and doctor that you feel right about.

Sue

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Re: new to the club
« Reply #7 on: May 03, 2007, 07:29:59 pm »
Doctors can be so different in their approach, Greg, depending on their specialty, their schooling and the methods they are comfortable with, I guess.   I concur with everyone else. YOU decide what is best for you given your medical condition.  Some people have no choice because their AN is too big or growing too close to the brain stem, so surgery is the only option.  If you have options, then research the heck out of it. I was lucky, I think, in that my doctors thought I was a good candidate for radiosurgery and that's the route I went.  My doctor said that the high occurance of permanent facial paralysis was unacceptable to him, and he favored the GK method of treatment. That's all that was available to patients in my area until recently when a Cyberknife machine came to town.  Anyway....I wish you the best of luck in your treatment and recovery and I'm sorry you are now a part of our exclusive club...but we welcome you with open arms and there are lots of good people who come here that can offer advice, support and compassion (and humor!) with any problem or question that you may have.   :)

Kindest regards,

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!
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gregsh

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Re: new to the club
« Reply #8 on: May 04, 2007, 06:45:23 am »
The support and encouragement from everyone on this forum is truly an inspiration.  Thanks for taking the time to reply to my post. 

As an update, I can't see Dr. Mattox at Emory until June 20th.  I think "Brucifer" was in the same boat.....I hate waiting ;)  Anyway, I wanted to share a story with the group.  I spoke to a lady here in Pensacola that was diagnosed with an accoustinc neuroma and she choose to fly to Stanford and have the CK procedure as the form of treatment.  Dr. Adler was her attending doctor.  She could not say enough positive things about Stanford, Dr. Adler and the level of treatment she received.  She HIGHLY recommended I look into this optioin before making a decision.  She was treated in June of 2006 and her tumor is showing signs of shrinking and necrosis.

I guess it's time to start shopping for a plane ticket to California  ;D

Thanks again to everyone for the encouraging words and I will try and provide updates and information as it comes.

pearchica

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Re: new to the club
« Reply #9 on: May 29, 2007, 06:53:56 pm »
Hey Gregsh! welcome to the club- Yeah, I'm one of the Stanford Alumnae (heck the only way I could get accepted to Stanford was to have a stupid AN). My size is the same as your's about, also on the left side. I was very pleased with my treatment at Stanford. I had three surgical opinions (third was with Jackler, head of ENT/Stanford) prior to going back for a fourth with Dr. Chang- it's definately worth the trip. As Chang both is a surgeon and a radio surgeon, he will give you an unbiased opinion. He was very clear with me: as I still had great speech discrimination in my left ear (92%) and no balance issues, I should do cyber knife. If I had balance issues, he would have done the same as Jackler (retrosigmoid surgery to preserve hearing- with a chance of 5-10% positive outcome on hearing).  I go back for my first MRI in August and will be monitoring for up to three years. As great as Chang was, the entire staff at Stanford was AWESOME. Really it's the support team and the cyber knife team that are wonderful.  So I hope you will consider it and try to fit in some time in the wine country if you can! Take care and I'm sorry that you are one of us!  Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

marystro

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Re: new to the club
« Reply #10 on: May 29, 2007, 08:26:22 pm »
Hi Gregsh,

I too flew to Stanford to have treatment at Stanford.  Though not too far from home.  I felt and am still are totally confident with the top notch treatment team!!  Heck it's my brain and I wanted the best!  Could I ask for more...

But since you are in Florida, Dr. Spunberg is just as good!!  My follow ups have been done remotely and are fine.  Keeping in touch with the doctors via emails are just ok with me since my side effects/symptoms are so mild...

Good luck with you decision!  This is the best place you have found - the Forum!!!

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

 


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