Author Topic: Newly Diagnosed  (Read 5365 times)

JanetD

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Newly Diagnosed
« on: February 02, 2012, 01:40:33 pm »
Hi,

I was diagnosed last week and am still trying to get over the initial shock.  I am so grateful for these forums and all the information they provide.  My written report gives the size as 10mm x 6mm, which my ENT says is small.  I have sent copies of my scans to the House Clinic and Dr. Roland at NYU, still waiting to hear back.  I would like to send it to a third doctor to see if I get 3 opinions offering the same advice.  Does anyone know of another doctor that they would recommend that would look at a scan?  Any help or advice would be greatly appreciated.

I am in New Jersey.

Thank you,
Janet

CHD63

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Re: Newly Diagnosed
« Reply #1 on: February 02, 2012, 02:23:50 pm »
Hi Janet and welcome to this forum .....

At the size of your AN, you should have wait and watch, radiation, or surgery as options.  I would get opinions on all.

Dr. Chang at Stanford University (http://med.stanford.edu/profiles/neurosurgery/faculty/Steven_Chang/) and Dr. Kondziolka at the University of Pittsburgh (http://www.neurosurgery.pitt.edu/faculty/kondziolka.html) both give free consults and are excellent radiation specialists.

If you have not already done so, send for the free ANA materials to help you sort out the options.  See:  http://www.anausa.org/index.php/contact-us/free-ana-information-packet

Best wishes and let us know how else we can help.

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

rupert

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Re: Newly Diagnosed
« Reply #2 on: February 02, 2012, 06:03:31 pm »
Ditto on what Clarice has suggested.

Lynnhamlin

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Re: Newly Diagnosed
« Reply #3 on: February 03, 2012, 10:18:02 am »
Hi Janet -
I was just recently diagnosed too and live in NY.  My tumor is about the size of yours.   I would recommend just going to see one of the doctors in person.  They will want to do their own scan (with their better machines), their own exam, and a hearing test.  I went to Dr. Selesnick at Cornell Weill in NYC.  This is his specialty.  I am now "watch and wait".  Feel free to e mail me.

JanetD

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Re: Newly Diagnosed
« Reply #4 on: February 04, 2012, 11:41:34 am »
Thank you all for your advice, so much information to take in.   I don't think I would be a good candidate for wait and watch.  Even though it seems to be small, my balance is really affected.  That was my only initial symptom, constant dizziness.  Makes it very difficult to drive. 

I'm not sure how I feel about radiation, just very confused at this point. 

JerseyGirl2

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Re: Newly Diagnosed
« Reply #5 on: February 04, 2012, 12:16:10 pm »
I noticed that you sent your MRI to House for a review and consultation. If you decide to go the surgical route at some point and are impressed by the doctors at House, please don't be discouraged by the distance from New Jersey to Los Angeles. I also live in New Jersey (Monmouth County) and flew to House in 2008 for my surgery.

Best medical decision I've made!!!


Catherine (JerseyGirl 2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

JanetD

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Re: Newly Diagnosed
« Reply #6 on: February 06, 2012, 08:44:26 pm »
Catherine,

Small world, I too am in Monmouth county.  Dr. Friedman called this morning and I am having surgery with him and Dr. Schwartz Feb. 28 at HEI.  Really nervous about it but just want to get it done. 

Janet

mindyandy

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Re: Newly Diagnosed
« Reply #7 on: February 06, 2012, 08:52:16 pm »
Janet
I am having surgery with Dr. Friedman/Schwartz March 7th  ;D I'm not far behind you.What approach is Friedman suggesting? If you want to talk PM me.

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

JerseyGirl2

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Re: Newly Diagnosed
« Reply #8 on: February 06, 2012, 08:56:21 pm »
Janet,

You'll be in wonderful hands at House!  Which type of procedure are you having?

One thing you may want to consider for the return flight from LAX to Newark (I'm assuming that's your route) is to upgrade to first class -- not only will you be in quieter and and more comfortable  surroundings, but you'll be able to get through first-class security at LAX in a fraction of the time it takes to get through the regular security line. Will you be staying at Seton Hall?

Best wishes as your surgery date approaches!

Catherine
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

JanetD

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Re: Newly Diagnosed
« Reply #9 on: February 06, 2012, 09:16:26 pm »
Thank you for the encouraging words, can always use that.  I am having the middle fossa.  I hope to be staying at Seton Hall, still waiting to hear about that.

schmidtkat

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Re: Newly Diagnosed
« Reply #10 on: February 06, 2012, 09:28:40 pm »
Janet,
Sorry to read of your diagnosis, but also glad to see you have a plan. I too had surgery at the HEI. They are a great team. JerseyGirl 2, Catherine, said exactly what I would say as well...best decision I made. Others have had great results elsewhere, so I'm not discounting their experiences, but this was definitely the right place for me to have gone. I stayed at Seton Hall after my surgery. If I can help to answer any of your questions you can PM me. I'll sure be glad to share what I can.
Kathy

mindyandy

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Re: Newly Diagnosed
« Reply #11 on: February 07, 2012, 07:06:42 am »
Janet
I see you said your surgery date is Feb 28? Thats a Tuesday? From my understanding House does surgeries usually on Wednesdays? Not that they don't do surgeries any other day but I found most to be on Wednesdays.
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

CHD63

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Re: Newly Diagnosed
« Reply #12 on: February 07, 2012, 11:20:55 am »
Hi Janet .....

So glad to hear that Drs. Friedman and Schwartz will be doing your surgery.  You will be in excellent hands so you can relax about that part.  It is a scary time, so it is very normal to be nervous, but you will be fine.

My husband and I stayed in Seton Hall the 16 days we were there last May (well, I spent 4 nights at St. Vincent's out of that time  :)) and we found it to be very comfortable and a great support with other families going through the same surgery.  I hope it works out for you and your family to stay there.

PM me if you want to know any more about my experience.

Many thoughts and prayers.

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

JanetD

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Re: Newly Diagnosed
« Reply #13 on: February 08, 2012, 06:41:56 am »
Thank you Clarice, always good to hear positive experiences from people.  Glad you are doing well and are willing to encourage others.

 


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