I am in the "watch and destroy" status * need help!

[Tumbleweed]

I just want to add to what Donnalynn has said. Dr. Brackmann developed many of the brain-surgery techniques that are in use today worldwide. He will also review your case for free, Rhonda. You should definitely contact him or one of the other surgeons Donnalynn mentioned. HEI has an unsurpassed reputation for successful brain surgeries.

Best wishes,
TW

[JerseyGirl2]

Ok, so I have sent out my MRI to 4 different doctors in the states.  I hesitated sending it to HEI only because many have spoken how then are amazing with AN's.  Mine is not an AN, it is on the 10th cranial nerve.  However, after reading more over the past few posts, tomorrow I will go to the mail and mail it off.  Give them a call to let them know.

Definitely a wise idea. If nothing else, HEI might be able to provide you with names/places that specialize in your exact condition.

Best wishes as you continue your research!

A New Jerseyan who is very thankful to have selected House for my AN treatment,

Catherine (JerseyGirl2)

[Tumbleweed]

Rhonda, I'm pretty sure HEI does all kinds of brain surgeries and not just those to remove an AN. You should probably call them before you mail something to them, so it doesn't get lost in the shuffle. Ask for Dr. Brackmann to return your call and he will.

You're making all the right moves, Rhonda. It's great that you're seeking multiple opinions from the most qualified doctors. You are going to be okay.

Best wishes,
TW

[petgroomer]

Once again, I need to relay my appreciation to all who are on this list and support eachother!
I feel I am getting in tune with what is going on and feel more confident with the decisions I will eventually make.
My head has been mailed all around the states.. lol.
Acutally, was a bit of a sobering moment for me the first time I had to mail my MRI cd off to the states.  I actually had a good cry about it.  Was weird sending off a part of me in such a cold way.  Knowing my future was in that envelope and the answers coming would be life changing.  After my 5th cd, I'm a pro now!!!!  Not even a  whimper.   
I am going to have a chit chat with Donna tonight and I am looking so forward to it!
Thank you all so much!!!!
Rhonda

[petgroomer]

Spoke with Donna for 2 hours!  It was fantastic and I would advise anyone of you/us to join together not only on here, but by other means such as phone.  She was an inspiration to talk with.  Thank you Donna!

[sgerrard]

Hi Rhonda,

I imagine a phone call with Donnalynn would cheer anybody up.  (Note to self: must speak to Donnalynn some day.)  I am glad to see you are making some contacts and feeling better about dealing with what lies ahead for you. We are going to be with you every step of the way.

Very best wishes,

Steve

[petgroomer]

I feel as if I have won a million bucks!  Dr. Friedman called me back regarding my "condition".  I will not go into specifics,, BUT,,,
He was a ray of sunshine to me on a cloudy day....

Rhonda

[Mickey]

That`s great to hear!  Keep on doing all you can and staying positive. There is a silver lining and with todays technology I`m sure youl will get all this behind you. Research, Best Wishes, Mickey

[Jackie]

Hi Rhonda,

Chiming in to welcome you and to let you know how refreshing your attitude is! I am sure that everyone is anxious to hear what Dr. Friedman's conversation went. Please don't keep us in suspense. We are all following each and every post and continue to hold you and everyone in our prayers! Blessings to you and may you get good news soon,
Jackie

[cindyj]

Hi, Rhonda!  Been following along on this thread, but wanted to pop in to say that I'm SO glad you were able to talk with Donnalynn - I was able to speak with her prior to my surgery this time last year, and what a world of help she was (kisses to you, Donnalynn).  Also, I think "ray of sunshine" would have been how I would have described my first conversation with Dr. Friedman...that, or a very comforting warm blanket. 

I certainly wish you the best wherever you ultimately go for your treatment!  We're all here for you, as I know you can already see,

Cindy

[another NY postie]

Hi, Rhonda,
I just got back from surgery at House with Dr. Brackmann...while I was there, a woman from Dallas was in visiting...it sounds like she had what you have and had surgery with Dr. Brackmann and Dr. De la Cruz 8 years ago for it.  It was very rare, very complicated and she had a rough recovery as it affected her swallowing and her vocal cords initially but she was doing great and was so positive.  I do not think she is on the forum, but the point I wanted to make is that House deals with all this rare stuff and has plenty of experience with it, so I think you will find hope and possibility with them.  Good luck and keep us posted.
Cheryl

[petgroomer]

Cheryl:
These are the stories I like to hear!!!  Woo hooo!
Thank you Cheryl for your support and positive outlook... 

Everyone:
By the way, I am reluctant to say what Dr. Friedman said as of yet as he has not met me.  Yes I sent him 2 preliminary MRI views of my "new addition" and he was very positive and made me feel very good about the situation, but since he has not seen the full MRI yet, I'll wait before I comment.   I mailed the MRI out to him yesterday.  Once I DO meet him (and I WILL meet him), I'll be better able to let you know the service I recieve and what exactly will be happening.
Of course I'll keep you all posted.. 
Wish I could change my post Subject line to:  "Watch and Conquer" status.  Yiiippeee,, I can and I did!
xo
Yeah yeah yeah,, I get all huggy and kissy when I drink wine... yummy!

[petgroomer]

Here is the MOST informative website info I can give to anyone with an AN. 
Talks about size vs. treatment.  Types and the history of AN's....

http://www.bcm.edu/oto/grand/01_04_01.htm

I even read it all.. LOTS OF READING! 
I found it by doing a search for the texas woman with a vagal schwannoma mentioned above... but so far came up with this.. lol 
Anyway, it deals with so many treatments and it pretty much answered any question I would EVER have if I an an AN. 

[CHD63]

Rhonda .....

Thanks for this very informative link to acoustic neuromas.  I read (or skimmed) the whole article and as with many articles on ANs, it is using specific data for presentation purposes.  It did seem to be quite accurate and up-to-date with much of the current literature, however.

The main thing I took out of the article is that we have to be very careful not to try to put all ANs in nice little boxes.  There are huge variables from person to person.  Each of us has a unique journey we have walked ..... or are walking.  How grateful I am that my AN was diagnosed in 2008 and not 1908 ..... or even 1958, for that matter.  What giant progress has been made in the treatment of ANs!

Thanks again.  Clarice

[been there done that]

THANK YOU so much for taking the time to read and write.  I have learned so much already from this forum and past archieves.  I have contacted Dr. Chang and also the Montreal Hospital in Canada that does cyberknife surgery and also talked with another schwannoma gal on the phone today to find out her story and share our symptoms.  Amazing!  I do not feel so alone now.  
The hospital I was first diagnosed at this year was Toronto and I am sure they consulted with every physician available to them for answers.  The size of my tumour has them walking on thin ice even trying to touch it.  I appreciate their honesty to tell you the truth, but still feel they could have steered me in other directions.  However, at the end of the day,, all we have is ourselves.  
I am still going to contact HOUSE.  Such a small word, yet everyone knows what I'm talking about on here anyway
I feel that the more I get my story out, the more I learn, and am directed towards more channels!
Keep the ideas coming!

Hi Rhonda:

I had Dr. House.  He is the man!  The best doctor - of any kind - I have ever known, period.  This guy spent 12 hours painstakingly removing my tumor.

Pete in GA.