Author Topic: newly diagnosed too  (Read 6323 times)

chocolatetruffle

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newly diagnosed too
« on: September 11, 2007, 11:11:40 pm »
hello!
i never heard of AN until yesterday and i am very glad to find this forum of really useful information and frank experiences.  mine was 2.8 cm and i got 2 referrals - dr robert jackler at stanford and the house.  i saw plenty of information on house, and very little on robert jackler.  any information on him is much appreciated. 
just wondering if there is a local support group in the bay area? Thanks!

chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan

HeadCase2

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Re: newly diagnosed too
« Reply #1 on: September 12, 2007, 09:56:30 am »
Hello chocolatetruffle,
  Sorry to hear about your diagnosis, but glad you found this forum. Welcome.   If you're also interested in checking out CK radiation treatment, you could get an appointment with Dr. Chang at Stanford.  Good luck in your "research phase".
Regards,
 Rob
« Last Edit: October 03, 2007, 02:11:01 pm by HeadCase2 »
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

Desilu

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Re: newly diagnosed too
« Reply #2 on: September 12, 2007, 05:51:45 pm »
Hi Chocolatetruffle,

I'm sure someone on this website has heard of Dr. Robert Jackler. Just give it some time and you will get some answers. If you need any info about HEI, I can help you with that. Just send me a personal email. I wish you the best on your AN journey.  Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

Obita

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Re: newly diagnosed too
« Reply #3 on: September 12, 2007, 07:18:10 pm »
Hi chocolatetruffle and welcome!!

Any chance you are a chocolatier?  If you are, you will sell a zillion truffles on this forum!!

I am sorry you need to join our club but I am very glad you found us.

If you do an advance search for Dr. Jackler you will find two pages of posts that mention his name.  I do know from reading previous posts that he is considered one of the best.

If you click on the ANA logo at the top you will be directed to the home page.  Click on support groups for locations.

Good luck and take your time finding the right doctor and treatment.  Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Mark

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Re: newly diagnosed too
« Reply #4 on: September 12, 2007, 09:58:19 pm »
Chocalatetruffle,

Sorry that you have had to join our group, but I do hope you will find some information and support here.

I live in the Bay area and consulted with Dr. Jackler when he was at UCSF as part of my treatment research. He is an outstanding AN surgeon and if you choose surgery he would be an excellent, experienced doc to use. I would also suggest you consult with Steven Chang who is a neurosurgeon at Stanford who does both surgery ( sometimes with jackler) and radiosurgery. Your AN at 2.8 cm is on the high end of what is effectively treated by radiosurgery and Chang would give you a more balanced view of your options than Jackler. However, if at the end of your journey you think surgery is the best option , then Jackler is certainly world class when it comes to ANs

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

chocolatetruffle

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Re: newly diagnosed too
« Reply #5 on: September 12, 2007, 10:27:31 pm »
thanks everyone for their response!  another question, how do you "interview" the doctors, what kind of questions should i be asking?

as to chocolatetruffle, chocolates is one of my 5 food groups  ;D 
chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan

goinbatty

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Re: newly diagnosed too
« Reply #6 on: September 13, 2007, 06:46:45 am »
Truffles...now I'm hungry. 
Check out this site for a list of questions.  It seems fairly thorough. 

http://anworld.com/questions/

1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

OTO

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Re: newly diagnosed too
« Reply #7 on: September 13, 2007, 08:23:20 pm »
chocolatetruffle

Check previous posting for Dr. Jackler's name.   Go to the search tool (its the box under the User's Info box on the forum page.    You can read previous messages that have his name in them.    Also for background information, go back to the ANA Home page (www.anausa.org).   Look at the Medical Resources tab and look for Dr. Jackler's name.  It has contact info and his background.    Look at the Overview tab, it has questions to ask the Drs., it also has ANA's opinion on what you should look for in a treating doctor....

Mark

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Re: newly diagnosed too
« Reply #8 on: September 13, 2007, 10:02:41 pm »
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

4cm in Pacific Northwest

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Re: newly diagnosed too
« Reply #9 on: October 03, 2007, 10:26:16 am »
Ok I am slow to see your post being we are now in October.

RE Dr. Jackler

 I personally have had Dr. Jackler. He is excellent to work with. He runs a very good ENT dept, impressed me as he taught his students… and I feel gave me good attention while I was there (very busy but efficient man). I am still here at 6 weeks post op so we do not know the full outcome of my post op recovery. I was a very atypical and complicated AN case. I spent the entire summer in research and interviewed 9 surgeons in North America. He was the 8th of the 9 I interviewed. He impressed me the most.  I flew out-of-state for him. He was not the most convenient surgeon for me but I feel the best for my specific case. He is prompt and replies to my e-mails… and made sure I had good follow up with one of his colleagues once back home.

I highly recommend Dr Jackler. He is a very intelligent and personable man -who shows sincere honesty and integrity.

If you read my posts you can see I deliberated over my surgeon choice. (I even flew to HEI to check it out- also a great place but for me I wanted Dr. Jackler- he actually did his “fellow� year at HEI… years ago.)

Best of luck with your research and decision making. Send me an e-mail (via the forum) if you have anymore specific questions…

Keep moving forward.

“4�

4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

chocolatetruffle

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Re: newly diagnosed too
« Reply #10 on: October 07, 2007, 08:33:40 pm »
hello!!
i am looking for anyone who had gone to House for retrosigmoid surgery with AN between 2.5cm to 3 cm.   i am interested to know your post-op results for hearing and facial - what was your level of hearing preservation and facial discomfort? and what was your recovery time?

thanks!

chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan

mbnolde

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Re: newly diagnosed too
« Reply #11 on: December 02, 2007, 11:31:55 am »
Truffles...now I'm hungry. 
Check out this site for a list of questions.  It seems fairly thorough. 

http://anworld.com/questions/


I am a newbie to AN too...thanks for the great list of questions!!  I will certainly use it as I gather information re: my very small AN. 

This forum rocks!!

MBNolde

pearchica

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Re: newly diagnosed too
« Reply #12 on: December 05, 2007, 05:58:41 pm »
I had 4 opinions prior to my final choice. Jackler was my third and unlike the first two- offered me some hope of hearing preservation (5 - 10%) via retro sigmoid. (Dr. McKennan Sacramento ENT and Dr. de la Cruz House Ear Institute both recommended translab).  Had I opted for surgery, Jackler was my choice.

I chose CK treatment as I really wanted to avoid surgery.  Chang and Soltys and staff at CK Stanford were awesome- same goes for my follow up which I had in September- showing a 4mm shrinkage- much better outcome than what I had hoped for.

Take care of yourself.  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

Alchemist

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Re: newly diagnosed too
« Reply #13 on: December 28, 2007, 03:29:09 pm »
I have been newly diagnosed as well. Like the others, finding this forum has been a blessing. I spent the last two days reading as much as I could...and then I could not sleep!! I am confused, scared and overwhelmed. Thank you for sharing your experiences! My world has  been turned upside down as I did not know of this condition before my dr told me that the MRI shows it.

Is anyone here from GA? My doctors are at the Emory hospital and the acoustic neuroma is large. The hearing in my left ear is just about gone, tinnitus is annoyingly loud and distracting, I experience the fullness in my left ear and some moments of imbalance. Sometimes, I also experience the facial sensation like the left side of my face is palsied.

Thank y'all so much!!
Translab @ EUH, Atlanta, GA 2.28.08
Drs. J. Olson & Mattox
Facial numbness left side; SSD
Radiation therapy followed surgery. Hospitalized for CSF leak 4.04.08 thru 4.11.08.
Long hard struggle back. Did I have to have this surgery?

sgerrard

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Re: newly diagnosed too
« Reply #14 on: December 28, 2007, 09:26:34 pm »
Hi Alchemist,

Welcome to our little club. There are people here from GA, and people who have had surgery at Emory, including with Dr. Mattox there, I think. They may come along shortly and fill you in.

A diagnosis of AN certainly can be a lot to take in all at once. Fortunately in most cases you do not have to rush, and can take a little time to sort things out. You can get more information on the surgery, other surgery centers, and the surgeons at Emory. How large is large? You may or may not be able to look at radiation as an option as well.

Don't panic. Having an AN is not especially fun, but you will make it through the process just fine. There are lots of people on this forum who will share their experiences with you and give you support any time you need it. You  may need to make a few changes in your life style, but you will still be able to enjoy most things in life.

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.

 


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