Re: a strange story from my brother in law

[Guest guest]

Hi ,

I've been quiet until now but watching your postings unfold. I have to

respond to this one, though. I find that Dr MacCollin is very knowledgable

and concerned with all people with NF. I think she knows what she's talking

about.

So, my advice to you is to wait until she has a chance to look at your

husband's films and make a determination.

A strange thing that you should bring up her name, though, because I had my

annual check-up with her today.

By the way, the rumor that I got from the Crew yesterday is, I think, true.

Dr. Martuza has returned to Massachusetts General Hospital (Dr. MacCollin let

it slip today ). He's done the bulk of my surgeries (and I've had 7 of

them). So it's very possible that she will share your husband's films with

him and get his opinion.

Take care ,

June

[Guest guest]

Hi,

Has anyone heard any good news lately on treatment or meds for tinitus?The

last I heard that a drug company(phizer) in Minneapolis Minnesota was working

on a drug for that.I cannot stand anymore to hear food frying and and semi's

honking and people talking and all other kinds of wierd noises that are

really LOUD.

Lana in Minnesota:)

[Guest guest]

Oh Lana - I wish!!! I've been totally Deaf since 1983. I'd love to hear

those sounds again! Music? Oh wow! )

But I understand where you're coming from. Sometimes it just seems like I

have this " gray noise " in my head. It's like static on the radio. It's

maddening!!!

June

[Guest guest]

Hi , Please wait until you get a second opion from

your brother in lws Dr. I have tumors in the cervicle

spine and thoracic spine and my Dr. at UCSF and several

others have told me that surgery at this time would

definatley leave me paralyzed, it is better to live with

the pain at this time. My prayers are with your

family. Gail Rose

[Guest guest]

Lana,

You're description of " foods frying " and " semi's honking " made me laugh out

loud. It's so true and sooo frustrating. I'd like to that: " crows

cawing " .... Anyway, I'm following a British study at the Birmingham

Institute (?) on the effects of Gingko Biloba on alleviating tinnitus. I'm

not sure that the study is published yet. But I think their preliminary

results were not too encouraging. But possibly their final results, if they

are done yet, are better. If I can find a website, I'll let you know.

Maybe other crewbies have heard of this study? And let us know if there is

info out there about the Minnesota study you were talking about. I haven't

heard of it before.

-Nisha

>From: Kizzycom@...

>Reply-To: NF2_Crewonelist

>To: NF2_Crewonelist

>Subject: Re: a strange story from my brother in law

>Date: Thu, 2 Dec 1999 20:31:44 EST

>

>From: Kizzycom@...

>

>Hi,

>

>Has anyone heard any good news lately on treatment or meds for tinitus?The

>last I heard that a drug company(phizer) in Minneapolis Minnesota was

>working

>on a drug for that.I cannot stand anymore to hear food frying and and

>semi's

>honking and people talking and all other kinds of wierd noises that are

>really LOUD.

>

>Lana in Minnesota:)

>------------------------------------------------------------------------

>See what's happening for NF2Con 2000!

>http://www.home.earthlink.net/~earldillon/nf2convegas2000.html

[Guest guest]

Hi Nisha,

If you can find further info on this I would really apprecieate it.This noise

drives me nuts.I hear food frying all the time and and voices and it sounds

like at times someone is banging on a piano and organ.I hear sounds like I am

in a tropical forest,semi's honking.I have heard voices and I have heard

childrens voices calling for mommy and one is a little girl and the other is

a little boy.I hear sad music abnd it effects my mood and some days I hear a

woman singing nothing but hello hello overr and over.Right now I am hearing

hissing so loud.It all is driving me nuts..I would appreciate some relief on

this.

Lana in Minnesota