Connect with ANA Peer Mentors - available to newbies

[Boppie]

I'd like to compliment the ANA on the idea of the WTT List.  I'd also like to send my respects to the brave patients who venture forth to call the list.  I have found callers and inquiries to be based on well formed lists of questions and concise requests. 

I do feel it important to not give a rundown of our own story.  I feel it is necessary to answer the questions of the caller and not allow histrionics to cause stress.

I am sorry to read that a patient would be be put in a more stressful situation by a phone call that was designed to help.

[Don Winslow]

    Hello all.  I am an oldie (age 77) who has not corresponded in several years but I have a question.  I had radio surgery on my 9 mm AN several years ago and learned to live with minor dizzines.  But during the past moinths, I have experienced what I call "a head full of wet sawdust" whose symptoms are dullness, difficulty in reasoning, depression, need to sleep, etc.  No pain.   
     The symptoms are similar to those of Meniere's disease but that was ruled out by my doctors at Mayo-Jacksonville. They told me several years ago that they couldn't help me with the symptoms.  Do others have these symptoms?  If so, how do they deal with them? 

      Thanks, Don Winslow

[Boppie]

Hi Don,  I am 65.  Welcome to this forum and make yourself at home here.  There are threads here for symptoms, and Meuniers references; you'll find great information plus a few old patients like me!    Use the search tool and plug in your keywords.

Have you had a recent MRI to look at the necrosis of your former AN?  I mean, since you were treated for a small tumor, you'd like to see if the scar tissue is the same.  You might need to fein pain in the head to get the MRI but heck the test is security to know what you are dealing with for sure.  As for the "symptoms" I'd want to get the diagnosis of the symptoms nailed down and to have a look at my own MRI.  There are medications for all sorts of symptoms.  What do they mean?...can't help you?

[ixta]

I am free to contact if anyone is investigating SkullBase Institute. Feel free to mail me here for contact info, I dont want to put my contact info in theforums. see my SBI topic under Microsurgery options before contacting..most questions are answered there.

[irene]

Hi I'm a new member, 6mm Lt AN compressing my cochlear apparatus causing dizzinss, decreased hearing and horrendous tinnitus so my oto neurosurg here  is sayi ing time to operate. But he can only go retrosigmoid which will make my chronic severe migraines worse. Is it logistically easy to travel cross country and have the surgery done at House topreserve my hearing?  I need my hearing for my job so i want to maximize my chances of saving it and Dr. Brackman seems to have the best results.  Any thoughts?

[leapyrtwins]

Irene -

I don't think any doctor can guarantee preservation of hearing.  You definitely want someone who will do his/her best, but if someone guarantees you something 100%, I'd be leery.  I could be way off base here, but I think any experienced doctor who performs retrosigmoid tries to maximize preservation of hearing, otherwise he/she would do translab.

From what I understand House has a wonderful reputation, but there are also other very qualified, reputable doctors who perform AN surgery.  I had mine done in Illinois and could have not possibly traveled cross country, nor do I feel I needed to.  I found incredible doctors right here in my own backyard.  I think the main thing with surgery is experience.

Jan
 

[Mark]

Irene,

Is there a reason you are not considering radiosurgery for an AN that small?

Mark

[firewalker]

I'm so appreciative of ANA's WTT list. I'm a newbie as well and because of this list, was able to contact a LIVE person that helped me get started on my AN quest for the right surgeon. Jan Leapyrtwins was my first contact on this list, and I choose her because she lives the closest to me. She was able to direct me to support groups in my area that weren't on the list and gave me the heads up on this forum. Thank you Jan!!!

I've never particiated in a forum and have found this source to be incredibly helpful at this difficult time. I'm so grateful for the WTT list and for all of you!

~Firewalker

[leapyrtwins]

Firewalker -

You're welcome.  I'm so glad I could help you.  After my surgery I became a member of the ANA and received the WTT list.  I found some wonderful people who told me about their experiences and gave me some great tips on the BAHA. 

Helping each other is what this forum is all about,

Jan

[Dee]

Hi, I wish I had the courage to talk to this forum before my surgery in the Spring.   I was scared & didn't know what to expect.  My sister gave me so much research on A.N. & I was overwhelmed.  The surgery to remove a 2cm. Tumor was successful but of course I have no hearing in my right ear & had facial paralysis which is now slight.
I definitely did not expect to have to go through physical therapy for walking.    I check your forum once in  a while when I have a concern & hope to be able to contribute when I can.
    

[summer]

  I am also on the WTT list , and i know when i was diagnosed it was an extremely lost and scarey time for me.  I would have done anything to just hear the words that everything will someday be in the past and there is life after the AN.
I am the Boston group leader in the Waltham area , and I hope anyone feels free to call me with questions or just to reach out.

Trish Butler

[ppearl214]

Trish,

thrilled to see you listed as well....

Folks, Trish is a terrific lady with lots of love and great advise to share...... I'd take her up on it!

Phyl

  I am also on the WTT list , and i know when i was diagnosed it was an extremely lost and scarey time for me.  I would have done anything to just hear the words that everything will someday be in the past and there is life after the AN.
I am the Boston group leader in the Waltham area , and I hope anyone feels free to call me with questions or just to reach out.

Trish Butler

[Denisex2boys]

Hi there ..... I am just wondering if there is anyone on the 'willing to talk' list that uses MSN messenger?  Either via webcam 'text messenging' or computer calling ....... if anyone wants to contact me on MSN - - search for denise_dougall@hotmail.com ....... I would look forward to a 'chat' with one or a 'group chat' .........  I will be needing lot's of encouragement these next couple of months - and could also probably offer some

[Kaybo]

I called today to find out more info about the WTT list.  Obviously there is no support group here, so I hope I can be a helpful resource in this area!!  Can't wait to get the papers!
K

[leapyrtwins]

K -

that's great news.  I've been on the WTT list for a while now and I find it's a great way to help others.  Being a resource is very fulfilling.   

Jan