Re: NF2 with the absence of BAN?

[Guest guest]

While I have ANs, I am sure I read on this list someone or few people who have

spinal tumors and not ANs; so while it is fairly rare, I don't think it is

unheard of; and I would insist on an MRI of my hearing canacls; who knows, if

the tumor is really small there is always the chance that a good

center/neurosurgeon can save the hearing! Marie

htavares@... wrote:

> From: htavares@...

>

> Does anyone in this group have NF2 with the absence of acoustic neuromas?

While all the research I have done on this disease states that it is highly

unlikley to have NF2 without the acoustic neuromas, my MDs say they are positive

I have it. I'm still new to this, only diagnosed in June of '98, having

multible spinal tumors, at 37 I am still hearing. After reading post for a few

days, I gather that most here are without hearing or at least battling with the

ANs. Somehow, in a strange way, I feel a little guilty to be hearing. While I

hope I continue to hear, I am a little skeptical of my diagnoses. Having never

had a MRI on my head, I wonder if it is there and just not giving me problems.

Should I worry about this and strive to find out for sure if they are there, or

just wait until I suddenly go deaf? Research I have done seems to lean in the

direction of removing them before loss of hearing can be more successful to

retaining hearing than waiting until you go deaf. I see my

> neuro on Tuesday, should I demand an MRI on my head or just CHILL about it.

Any input on this matter would be appreciated.

>

> Thanks,

>

> Horace

>

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

> How many communities do you think join ONElist each day?

> http://www.onelist.com

> More than 1,000!

[Guest guest]

Susie I would like a copy of the article by G. k on mosaic NF2; I do have

bi-laterals, but Mia MacCollin has suggested I am mosaic; my address is Marie

Drew 223 Meadowview Drive, Canonsburg, PA 15317

You were right on when you said most docs don't really know about NF! Marie

sparkins@... wrote:

> From: sparkins@...

>

> From: htavares@...

>

> Does anyone in this group have NF2 with the absence of acoustic neuromas?

>

> Horace,

>

> As I understand it, there are several ways of diagnosing NF2, the most

> obvious/common is bilateraql ANs. Another way is a genetic test which only

> gives a result about 60% of the time. You have had spinal tumours removed

> and presumably they did a test to see what type of tumours they were.

> Usually if they are " scwannomas " then its an NF2 diagnosis, but if they are

> " Neurofibromas " then its an NF1 diagnosis. Central nervous sytem tumours

> are quite rare in NF1 (about 2% of NF1 sufferers have CN tumours). The

> other thing that it could be is " mosaic " NF1 or NF2, this means only a part

> of your body is affected eg your neck. I have mosaic NF ( I'm still

> waiting to find out if its NF1 or NF2) and I only have tumours in the left

> side of my neck - having said that tumours on the spine in the neck are

> pretty dangerous because they can have an effect on such a large part of

> tour body. Your tumours were in your neck as well weren't they? I have an

> article written by Dr Gareth about mosaic NF, I can send you a copy

> if you want to know more.

>

> Overall, my experience has taught me that Drs know so little about NF that

> I wouldn't take anybodys diagnosis unless they were an NF expert. It has

> taken me 10 years to get close to a diagnosis.

>

> Personally I think you would be wise to have a brain MRI because otherwise

> you will just worry about it. Until I had my brain MRI, everytime I

> dropped something or was unco-ordinated my husband used to look really

> scared and I could see " she's got a brain tumour " in his eyes. The MRI put

> both our minds at rest.

>

> Like you, I don't always feel I a part of the crew because I'm not deaf,

> but I have learned a lot about how deaf people think and feel and so I hope

> I will be better able to cope with encounters with deaf people, but I would

> still worry that my behaviour might be perceived as patronising.

>

> Speak to you sson

>

> Susie

>

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

> ONElist: bringing the world together.

> http://www.onelist.com

> Join a new list today!

[Guest guest]

Hey Horace

Well I am still hearing although it is on it's way South big time and up

until a year ago I am hearing perfectly. I have had one AN remover and an ABI

put in and am schedualed to have my other AN removed this coming November. So

I am hearing for now but not for long I cannot use the telephone anymore and

am stuck carring around my TDD all day and yes people tend to stare when I

use it at pay phones or in coustomers houses ( I work for the cable

company) but hen again I dont take it personnaly I think they are just

curious.

in Vegas

[Guest guest]

Re: NF2 with the absence of BAN?

>

>

>Well, acoustic neuromas are only one diagnosis of NF2. How about cafe au

>lait spots and spinal tumors or tumors along your Central Nervous System

>(brain and spnal cord)? You mentioned you had spinal tumors so I'm assuming

>that's the reason why the doctor tells you that you have NF2...unless of

>course he/she did a genetic test and knows for sure you have NF2?

>

>Mark

>

From: Horace

Mark,

As to your reply on NF2 without Ban, yes, I was covered with CAL spots as a

kid that were real noticable. As I've grown older they are not as dominate

as they were. As a kid my friends said I looked like an apaloosa horse!!!!

While no genetic testing has been done, I am the first in my family to have

this problem. So, I guess I'm spontaneous. Doctors base their diagnosis on

pathology from the six spinal tumors that have been removed, three from

lumbar spine and three from cervical spine. Along with the ones that have

been removed, doc tells me I have tumors in every vertebrea in my spine. At

this point all are small and not causing problems except for two more at

T4(golfball sized) that will probally be the next to come out. Right now

they are only mildly invasive to the cord and my neuro wants to give me a

break from surgery as he will have to bust open my chest to remove these and

I have had three major spinal surgeries in the last ten months. I really

hope that diagnosis is wrong, but on the other hand it could be something

worse so I will take the NF2. Thanks to you and everyone else that

responded to post as it will give me something to argue with neuro about.

Thank You,

Horace

[Guest guest]

Re: NF2 with the absence of BAN?

>

>

> Well, acoustic neuromas are only one diagnosis of NF2. How about cafe au

> lait spots and spinal tumors or tumors along your Central Nervous System

> (brain and spnal cord)? You mentioned you had spinal tumors so I'm

assuming

> that's the reason why the doctor tells you that you have NF2...unless of

> course he/she did a genetic test and knows for sure you have NF2?

yesum. many many cafe au lait, spots in the eye, fatty tumors on well about

every where, ect. -speedy

________________________________________________________

NetZero - We believe in a FREE Internet. Shouldn't you?

Get your FREE Internet Access and Email at

http://www.netzero.net/download/index.html

[Guest guest]

My daughter Nicki, 19, has spinal tumors and no AN's. My mother never had

any AN's

Mikey A in Pittsburgh

At 04:29 AM 5/17/99 -0000, you wrote:

>From: htavares@...

>

>Does anyone in this group have NF2 with the absence of acoustic neuromas?

While all the research I have done on this disease states that it is highly

unlikley to have NF2 without the acoustic neuromas, my MDs say they are

positive I have it. I'm still new to this, only diagnosed in June of '98,

having multible spinal tumors, at 37 I am still hearing. After reading

post for a few days, I gather that most here are without hearing or at

least battling with the ANs. Somehow, in a strange way, I feel a little

guilty to be hearing. While I hope I continue to hear, I am a little

skeptical of my diagnoses. Having never had a MRI on my head, I wonder if

it is there and just not giving me problems. Should I worry about this and

strive to find out for sure if they are there, or just wait until I

suddenly go deaf? Research I have done seems to lean in the direction of

removing them before loss of hearing can be more successful to retaining

hearing than waiting until you go deaf. I see my neuro on Tuesday, should

I demand an MRI on my head or just CHILL about it. Any input on this

matter would be appreciated.

>

>Thanks,

>

>Horace

>

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

>How many communities do you think join ONElist each day?

>http://www.onelist.com

>More than 1,000!

>

>