Re: New Member Craig Baumann

[Guest guest]

Hello Craig and family, especially Garrett.

Welcome to the Crew. Many have young NF2 children, who will hear your cry

for help and respond. I understand your feelings of being scared. We have

all been there, to be truthful, are still there. My family of sufferer's are

adults, but the first thing I did, was to ensure our treating doctors, kept

us informed. I have two doctors, who send me copies of reports and

correspondence. Will look forward to reading your posts.

ine from Australia

New Member Craig Baumann

> My name is Craig Baumann.

>

> Our 11-year old son, Garrett was diagnosed with NF2 two weeks ago

[Guest guest]

DONNA G.

I HOPE YOU ARE READING THIS. I THINK THE PAPER YOU WROTE ON NEWLY

DIAGNOSED NF2 WOULD BE OF GREAT HELP TO GARRETT'S PARENTS.

I AM SURE SEVERAL OF THOSE ON THE CREW CAN OFFER VERY GOOD SUGGESTIONS.

WE HAVE ALL BEEN THERE.

CATHERINE

> New Member Craig Baumann

>

>

> My name is Craig Baumann.

>

> Our 11-year old son, Garrett was diagnosed with NF2 two weeks

> ago. He had

> a Schwannoma on his neck removed four year ago. The Schwanomma

> was starting

> to bother him again so an MRI was performed. It was on the MRI that

> bilateral Acoustic Neuromas were discovered. He had an MRI two years ago

> and the Acoustic Neuromas were much smaller then but neither the

> radiologist

> nor the neurologist noticed them. They are currently 1.0cm on the right

> side and 0.5cm on the left side. The MRI also showed " lesions "

> on several

> cranial nerves: 3rd, 4th, 5th and 10th. Nobody can tell me if this is

> normal at this young age. Garrett's Neurologist waited four weeks to tell

> us that our son had NF2. (He said he didn't want to ruin our Christmas ski

> trip and when we returned he was out of town and then sick) We

> told him we

> want the truth. We can handle it. He says that he is not

> familiar with NF2.

> So we have had to chart our own course in trying to help our son.

> Garrett had a hearing test and it the results were very good. There is a

> slight decrease in hearing function on the right side. We went

> to the House

> Ear Clinic in Los Angeles and met with Dr. Slattery. He

> recommended

> that he perform microsurgery on left side now (the smaller side). He said

> that since the Acoustic Neuroma on the right side was growing toward the

> Brain stem that he did not know if he could preserve hearing on that side

> with microsurgery.

> We are flying tomorrow morning to Sacramento (we live in San

> Diego) to meet

> with Dr. , a neurosurgeon familiar with NF2 who Garrett's

> neurologist recommended. He used to work at UCSF.

> I am desperately trying to inform myself so as to make the best

> decisions to

> help our son. I have been on the " Acoustic Neuroma Society " mailing list

> for the past week. There is a lot of information exchanged, especially

> microsurgery vs. Fractionated Radiosurgery. I understand that the

> treatment

> of Acoustic Neuromas is more difficult for people with NF2. I am very

> confused as to whether we should rush into microsurgery, have Fractionated

> Radiosurgery, or wait and watch.

> Needless to say we are still in the state of shock and very scared. Your

> assistance and that of the entire group at NF2 Crew would be greatly

> appreciated.

>

> Craig Baumann

> bayhome@...

>

>

>

>

[Guest guest]

Craig,

Sorry to hear about your sons NF2. Our six year old son was diagnosed with

NF2 about five months ago. He doesn't have the bilateral VSs yet, that's

something we get to look forward to. Our son had a schwannoma removed from

his cervical spine a few months ago and has a retinal hamartoma,

hypopigmented macules (white spots) on his skin, and a small meningioma in

his right tentorium. Your decision on treatment is something only you can

make and I'm sure you will make the right one for you. So far I haven't

seen one definite treatment that is proven best. It is a good idea to take

your son to a NF clinic and see a geneticist that is knowledgeable about

NF2, definitely have his eyes checked, and get enhanced baseline MRIs of

spine and brain if you haven't done all of this yet. I would have been

upset if one of our doctors took a month to tell us our son had NF2. I like

to have all of the details. Our son was misdiagnosed for six years. It

sounds like your son was misdiagnosed for awhile too. God Bless,

New Member Craig Baumann

> My name is Craig Baumann.

>

> Our 11-year old son, Garrett was diagnosed with NF2 two weeks ago. He

had

> a Schwannoma on his neck removed four year ago. The Schwanomma was

starting

> to bother him again so an MRI was performed. It was on the MRI that

> bilateral Acoustic Neuromas were discovered. He had an MRI two years ago

> and the Acoustic Neuromas were much smaller then but neither the

radiologist

> nor the neurologist noticed them. They are currently 1.0cm on the right

> side and 0.5cm on the left side. The MRI also showed " lesions " on

several

> cranial nerves: 3rd, 4th, 5th and 10th. Nobody can tell me if this is

> normal at this young age. Garrett's Neurologist waited four weeks to tell

> us that our son had NF2. (He said he didn't want to ruin our Christmas ski

> trip and when we returned he was out of town and then sick) We told him

we

> want the truth. We can handle it. He says that he is not familiar with

NF2.

> So we have had to chart our own course in trying to help our son.

> Garrett had a hearing test and it the results were very good. There is a

> slight decrease in hearing function on the right side. We went to the

House

> Ear Clinic in Los Angeles and met with Dr. Slattery. He

recommended

> that he perform microsurgery on left side now (the smaller side). He said

> that since the Acoustic Neuroma on the right side was growing toward the

> Brain stem that he did not know if he could preserve hearing on that side

> with microsurgery.

> We are flying tomorrow morning to Sacramento (we live in San Diego) to

meet

> with Dr. , a neurosurgeon familiar with NF2 who Garrett's

> neurologist recommended. He used to work at UCSF.

> I am desperately trying to inform myself so as to make the best decisions

to

> help our son. I have been on the " Acoustic Neuroma Society " mailing list

> for the past week. There is a lot of information exchanged, especially

> microsurgery vs. Fractionated Radiosurgery. I understand that the

treatment

> of Acoustic Neuromas is more difficult for people with NF2. I am very

> confused as to whether we should rush into microsurgery, have Fractionated

> Radiosurgery, or wait and watch.

> Needless to say we are still in the state of shock and very scared. Your

> assistance and that of the entire group at NF2 Crew would be greatly

> appreciated.

>

> Craig Baumann

> bayhome@...

>

>

>

>

[Guest guest]

Carol, land

Hi Carol, I'm curious as to where in land you live. I used to live in land. I have friends who live in Laurel, Chevy Chase, College Park, and Baltimore. There are several others too. Have you ever been to Gallaudet University in WDC? I graduated from and worked there.

Anyway, nice to meet you )

June

[Guest guest]

Welcome Craig...we have some parents with children that have NF2 and you will

hear from them eventually I am sure. I am a mutant and my kids have no symptons

at this time, (22 & 24), but I still worry if the day should come. I wasn't

diagnosed till I was 37 even though my AN was removed at 32. NF is such an

individual disease and affects everyone differently. Personnally I wish they had

removed my AN when I first started having hearing loss and perhaps I would not

have lost it...but the first doctor was an idiot...what can I tell ya!!!

I think most of us attempt to go in with a positive attitude and deal with

things on an hourly (!) basis.

Let us know what doc in Sacramento said.

Here is another site: http://www.nf.org/

and

here is a page of websites: http://www.nf.org/

God be with you and your family....

Carol, land

CarlaRLong@... wrote:

> My name is Craig Baumann.

>

> Our 11-year old son, Garrett was diagnosed with NF2 two weeks ago. He had

> a Schwannoma on his neck removed four year ago. The Schwanomma was starting

[Guest guest]

Hi June...Live in Lusby, about 50 miles south of DC on 4. Never been to

University...it would fall down if I did..LOL!!

We moved here in 93, via Air Force, s. Now retired (sorta). I

like it here, very much like Michigan where I grew up. Hubby wants to move

to WV in 5 years..we'll see.

You know anyone down south here?

I used to have an antiques and collectibles shop in ville..many

people came in from the areas you mentioned!

Carol

Boob1188@... wrote:

In a message

dated 02/18/2001 9:39:33 AM Pacific Standard Time,

Hi Carol,

I'm curious as to where in land you live. I used to live in

land.

I have friends who live in Laurel, Chevy Chase, College Park, and

Baltimore.

There are several others too. Have you ever been to Gallaudet

University

in WDC? I graduated from and worked there.

Anyway,

nice to meet you )

June

[Guest guest]

Welcome Craig

I have two sons with NF, both have some symptoms.

I think there would be a few ways of looking at when is time to treat your

son.

In my children's case we are letting them grow up and get an education and

have a life for as long as we can before we screw up their hopes and dreams.

As far as I know ANs always grow back, and they can be very slow growing

first time round. In my case ( I have NF also ) I was able to live a normal

life till age 27 until it was deemed necessary to remove one side, which

grew back in 18 months.

So I'm sure this view will not be popular with many people here as ANs can

be aggressive at a young age. But just be sure to ask the knife wielding

surgeon about rapid regrowth . Things have moved forward in NF research in

the past few years .

GOOD LUCK !

Oh almost forgot ! Welcome to the crew Craig

From Marcus Down under

>

[Guest guest]

Hi Craig and welcome to the Crew! I am glad to see you out there trying to get

your

hands on info. Since your approach sounds much like my parents' when I was

first

diagnosed, I'm inclined to reply. My name is and I've been living the NF2

experience since I was 15 in 1991. My advice in thinking about the treatment

course to

pursue for one's child is to proceed so that we keep as many options available

for them

as we can. When I was first diagnosed, I figured I would be dead before I even

graduated from high school. (just a kid's thinking going off of stuff she saw

on tv and

movies where the words brain tumor were mentioned) The short-term and keeping

my

hearing as long as possible were my top priorities. My Mom continued to do her

research

to find me the best treatment for me with my general well-being and long-term

options in

mind. I am still living and open to the experience of the world... and that

experience

is still quite fulfilling. I am fortunate enough to be engaging in graduate

studies,

but that's just the particular experience I am exploring right now.

I think the treatment route for children and young adults should be approached

much

differently than the one for someone who is diagnosed at an older age. From my

experience and familiarity with the experiences over the past 4 years of others

living

with NF2, I've formed some impressions about various things. These are my

opinions and

I am just stating them to put them on the table--perhaps you'll get more

dialogue to

consider. I think that's healthy.

NF2 is a long-term condition. The severity and extent of its effects are

unpredictable.

For this reason, I would advise anyone to keep themselves in as strong of a

general

health condition as possible and to consider long-term implications of surgeries

that

are not necessary in the sense of maintaining critical functions or preventing

irreversible damage to critical functions.

HEI is an excellent treatment facility... for acoustic tumors. I think they

tend to be

really focused on the hearing aspect of NF2. That's expected since that is

their world.

I've seen a whole lot of people that are very happy with what they get from

HEI, and

then I've seen people that were not. The problem is, from my perspective with

respect

to NF2, that HEI tends to provide treatment for only one aspect of NF2. This is

dangerous, in my view. NF2 is a continually-developing condition (considering

that it

goes through cycles of dormancy and activity). A lot of times there are things

that are

going on in different parts of the body that are related to others... but if the

focus

is only on the acoustic nerves and surrounding area, then people stop thinking

about

their overall well-being in exchange for short-term successes in " saving the

hearing. "

Ten years isn't much, but it's been enough to teach me that there is a huge need

to get

people that have gone through the humbling experiences that come with NF2 back

out in

the world in a condition that they can interact with other people. That's what

this

thing is all about for me. I see it on this Crew and I experience it in my

everyday

life. The hearing is not what makes this experience possible, although even I

used to

think so going into all this.

I go to Indiana University Medical Center in Indianapolis. My neurosurgeon is

. He is essentially my general practitioner now and for any problems I

have, I consult with him. Since it is a teaching hospital, I also see various

specialists there when problems pop up. My neuro-opthalmalogist (Dr. Yee)

happens to be

familiar with NF2 (a big plus!). Then just across the street is Riley's

Children's

Hospital where my Otolaryngologist ( Miyamoto) has his office [which is

also

where my audiologist who does my ABI programming is]. (Dr. Miyamoto does the

brain

tumor/acoustic tumor removals while my ns does the access to the surgical areas,

as well

as orthopedic (a knee tumor removal)... and if any of my spinal tumors act up,

my ns

would do those). My ns has seen a whole lot over the years, so he has a good

idea going

in of what the best and worst possible and probable outcomes will be when

considering

whether to have a surgery and deciding on how to address symptoms. My Mom is

usually

ready with the hard questions and he always answers them honestly (even when the

truth

is unpleasant). If you end up seeing a wide range of doctors at a wide range of

places,

it gets tiring but it's *very important* that you inform them about as much of

the

circumstances surrounding whatever you're trying to address. (it has been my

experience

that it's wise to keep an eye on things with regular MRIs, but that since there

are so

many tumors, they should be left alone if they aren't growing or pushing on

anything or

causing symptoms--at the same time, it's important to be aware of *any* changes

in one's

well-being... and a lot of times parents will notice things in their kids before

the

kids do--kids tend to be tough, so if they complain about something, it's

probably

pretty major (or that's how I was...)) I don't know what a geneticist can do

for

us--my personal opinion is that they are a waste of time (as far as assisting us

with

treatment--I do support their research, but they carry that out in a world that

is way

different from our everyday lives).

NF2 takes away some stuff from us (sometimes a whole lot at a particular time!)

and if

we're not careful, we concentrate on those losses and miss the gifts it's trying

to

reveal. (compassion, understanding, different perspectives, the ability to

relate to

more people in the world in an enhanced way)

Craig, Is Garrett having any other symptoms? (headaches, dizziness, vomiting,

vision

problems, etc) How did he handle his first surgery for the neck?

What's his personality like? How is he handling the NF2 thing? It was scary at

first

for me, but having information was the best way to address the fears. Since it

sounds

like you are like that, I'd guess he's like that too. It's still a young age to

start

all this stuff. Be careful on jumping into surgery. A friend of mine who is

not on the

list started them that young... and is now having a really, really, really,

really rough

time because it turned into too many surgeries over a 6 year period (it started

out in

trying to save the hearing, but now it's about addressing problems that are

threatening

his life and he seems to have lost his capacity to heal--which is difficult to

see

considering he is only 18 now). There's a lot we can't control, but that just

means we

have to be wise in where we focus our energies and of course make the most out

of our

experiences. Another little comment: when my Mom was looking for stuff for my

treatment, I had no idea she was doing it. I only found out about everything

she did

recently. Back then, I was still basically living in denial and determined to

keep my

hearing and " beat NF2 " or whatever--or die trying. She allowed me to carry on

my

everyday life, with the understanding that I had to be conscious of my health

concerns,

but she did not make NF2 the center of our lives. She did what she needed to do

(and

what I needed her to do) and I didn't really know about it, but I benefited from

it. At

the younger age, that's probably pretty important: to keep the focus on the

child/young

adult and not on the NF2 per se. It's like the difference between doing

something

because you want everyone to know you're doing it and doing something because

you know

it has to be done and really don't care whether anyone appreciates it because

you know

it has to be done and that is satisfying in itself. It's rough on the kids, but

I think

it's even rougher on the parents and I applaud all of you. Positive vibes and

strength

all around! Love and Hugs,

> Date: Sat, 17 Feb 2001 15:09:54 EST

> Subject: New Member Craig Baumann

>

> My name is Craig Baumann.

>

> Our 11-year old son, Garrett was diagnosed with NF2 two weeks ago. He had

> a Schwannoma on his neck removed four year ago. The Schwanomma was starting

> to bother him again so an MRI was performed. It was on the MRI that

> bilateral Acoustic Neuromas were discovered. He had an MRI two years ago

> and the Acoustic Neuromas were much smaller then but neither the radiologist

> nor the neurologist noticed them. They are currently 1.0cm on the right

> side and 0.5cm on the left side. The MRI also showed " lesions " on several

> cranial nerves: 3rd, 4th, 5th and 10th. Nobody can tell me if this is

> normal at this young age. Garrett's Neurologist waited four weeks to tell

> us that our son had NF2. (He said he didn't want to ruin our Christmas ski

> trip and when we returned he was out of town and then sick) We told him we

> want the truth. We can handle it. He says that he is not familiar with NF2.

> So we have had to chart our own course in trying to help our son.

> Garrett had a hearing test and it the results were very good. There is a

> slight decrease in hearing function on the right side. We went to the House

> Ear Clinic in Los Angeles and met with Dr. Slattery. He recommended

> that he perform microsurgery on left side now (the smaller side). He said

> that since the Acoustic Neuroma on the right side was growing toward the

> Brain stem that he did not know if he could preserve hearing on that side

> with microsurgery.

> We are flying tomorrow morning to Sacramento (we live in San Diego) to meet

> with Dr. , a neurosurgeon familiar with NF2 who Garrett's

> neurologist recommended. He used to work at UCSF.

> I am desperately trying to inform myself so as to make the best decisions to

> help our son. I have been on the " Acoustic Neuroma Society " mailing list

> for the past week. There is a lot of information exchanged, especially

> microsurgery vs. Fractionated Radiosurgery. I understand that the treatment

> of Acoustic Neuromas is more difficult for people with NF2. I am very

> confused as to whether we should rush into microsurgery, have Fractionated

> Radiosurgery, or wait and watch.

> Needless to say we are still in the state of shock and very scared. Your

> assistance and that of the entire group at NF2 Crew would be greatly

> appreciated.

>

> Craig Baumann

> bayhome@...

[Guest guest]

Hi Craig and WELCOME!

My name is Donna Hutyra and I have NF2 and a 14 year-old son with

NF2. He

has bilateral acoustic neuromas as well. His neuroligist told me

FIVE YEARS ago that he wanted to watch these until they begin

growing. At the time, I was ready to do surgery NOW, since I had

lost my hearing. Dr. Slopis at MD in Houston, Texas is

the doctor that I take Lee to and he is VERY knowledgable when it

comes to NF2. I have been lucky in the past 6 months, because Dr.

Slopis is branching out to include Adults (formerly a Children and

Adoloscent Neurologist) and I have started going to him.

Every 6 months, Dr. Slopis does a MRI, watching Lee's AN's. He also

does regular hearing tests, and to date Lee's hearing has not

detoriated any. He is planning to send us to HEI this summer just so

Lee can get established as a patient. It was VERY hard for me to

relinquish my son to a doctor after I went thru loosing my own

hearing, but I am VERY glad that I did.

Donna Hutyra

Kilgore, Texas

[Guest guest]

Hi Donna H

Yes its tough trying to work out what's best for kids with NF2 . I think

also as long as they are watched for serious changes, children are best left

to have a childhood free from serious surgery if possible. I dont think many

people here know that my son had to have one kidney partially removed

at age 4. This was on top of numerous nasty NF type tests looking for the

cause of his dropped foot including opening up his leg. became very

hard to deal with through this ordeal and for years later. I dont think

children ever forget the fear .

Of course some children with NF will need surgery, and its important to

realise this .

Marcus

[Guest guest]

That is it Marcus! I have tried to give Lee a " normal " childhood,

and that has not been easy! BUT, I still have expectations of him

and he has SURPASSED those expectations! I have to brag here! My 14

year old son (9th grade) who hardly EVER cracks a book, has made ALL

A'S this semester! Better than his Mom did!

Donna H.

> Hi Donna H

> Yes its tough trying to work out what's best for kids with NF2 . I

think

> also as long as they are watched for serious changes, children are

best left

> to have a childhood free from serious surgery if possible. I dont

think many

> people here know that my son had to have one kidney partially

removed

> at age 4. This was on top of numerous nasty NF type tests looking

for the

> cause of his dropped foot including opening up his leg. became

very

> hard to deal with through this ordeal and for years later. I dont

think

> children ever forget the fear .

> Of course some children with NF will need surgery, and its

important to

> realise this .

> Marcus