Re: Why?

[Guest guest]

Then you have a vestibular schwannoma?

I am sorry I may have not said what I wanted to say the right way. I was diagnosed with NF2 about 5 weeks ago. I went to Boston and saw Mia MacCollin and she changed the diagnosis to Schwannomatosis because the Schwannoma I have is Not on the Acoustic Nerve. Sorry if I confused anyone. But I am now researching this condition. I think it is very similar to NF2 but it is not herediatry according to Mia M. Dianne

[Guest guest]

One thing I know for sure is that the Vestibular nerve and the Acoustic nerve are both the same (the 8th nerve). If the Schwannoma is not on that nerve - according to Mia MacCollin - it is not NF2. I'm still trying to find things out about it. Dianne

[Guest guest]

I am sorry I may have not said what I wanted to say the right way.  I was diagnosed with NF2 about 5 weeks ago.  I went to Boston and saw Mia MacCollin and she changed the diagnosis to Schwannomatosis because the Schwannoma I have is Not on the Acoustic Nerve.  Sorry if I confused anyone.  But I am now researching this condition.  I think it is very similar to NF2 but it is not herediatry according to Mia M.  Dianne

[Guest guest]

My tumor is below the Acoustic nerve and I can't remember if she (Dr. MacCollin) told me if it is on the facial nerve (7th nerve) or the trigeminal nerve (5th nerve). I will be talking with Mia MacCollin next week after another radiologist at Mass General reviews my films. Dianne

[Guest guest]

Thanks for clarifying that Pete, I did not realize that it was actually a

different(?) disease,; Now my question would be if this person DOES have

Schwannomatosis then they do NOT have NF2, and therefore that explains why

it is not heritary, is that correct? Marie

PS Sending you something re job hunt privately

Re: Why?

>Okay.. Here's my two cents, I'm tired and unemployed and cross eyed from

job hunting .. but here's how I read it.

>

>She was originally diagnoised with NF2

>

>She has been given a new diagnosis of Schwannomatosis

>

>from talking with Mia McColling in the past I know that two have many

similaraties. (No I don't have it, it just came up when we discussing my

tumors over tea and crumpets )

>

>Schwannomatosis is not carried on a chromosome that is transferred to your

offspring

>

>Pete

>

>

>On Fri, May 18, 2001 at 04:42:52PM -0400, CarsonCutey@... wrote:

>> In a message dated 5/18/01 4:26:26 PM Eastern Daylight Time,

>> GREGIERY@... writes:

>>

>>

>> >

>> > I caught that, too, Marie, but my thinking is that if you have NF2, and

>> > it's not hereditary, that means you've acquired NF2 spontaneously

>> >

>>

>> BUT you can still pass it on to your offspring (whatever that may be Greg

>> ) so regardless its still considered hereditary...I think the person who

>> said wasn't hereditary in their case, said they didn't have NF2 as it

turns

>> out but had schwannomatosis (thats how I read/understood it)

>>

>> as quoted from mail: " As you know I was recently diagnosed with NF2. I

went

>> to Boston - Mass General - and saw Mia MacCollin. She told me that my

tumor

>> is actually on my Trigeminal nerve and not the acoustic nerve and said my

>> diagnosis is actually Schwannomatosis "

>

>--

> Brayman ICQ # 66709621

>

> " The Great part about being deaf is, it's easy to ignore all the jerks "

>

>

>

>

>

[Guest guest]

Hi Marie,

If Dianne has ONLY TWO tumours and NEITHER are on the VS nerve then it is called Schwannomatosis - but then Dianne is only one or two Central nerve tumours away from NF2. Lets hope that Dianne never develops any more....

.....

Re: Why?As you know I was recently diagnosed with NF2. I went to Boston - Mass General - and saw Mia MacCollin. She told me that my tumor is actually on my Trigeminal nerve and not the acoustic nerve and said my diagnosis is actually Schwannomatosis - do any of you know much about that? I was very thankful this is not a hereditary condition. I have 2 tumors to deal with and I am definitely having Fractionated Stereotactic Radiosurgery on the one in the brain and I hope to have it on the one in my neck. I want to know if I have ANY tumors - no matter how small - so I can make decisions on how to deal with them before I become symptomatic. I think we need to seek treatments that are right for us, when they are right for us. I believe we need to be very involved in our health care and work closely with our doctors. The tumor in my brain is 1.5 cm. I was told I could wait 6 months and have another MRI - I am not going to do that. I am already having symptoms - I don't want to have permanent damage. I, for one, want to take care of these while they are small. Dianne

[Guest guest]

I was under the understanding vestibular schwannoma was the correct terminology for an acoustic neuroma; The diagnosis Schwannomatosis is actually a different disorder? Marie

Re: Why?

Then you have a vestibular schwannoma?

I am sorry I may have not said what I wanted to say the right way. I was diagnosed with NF2 about 5 weeks ago. I went to Boston and saw Mia MacCollin and she changed the diagnosis to Schwannomatosis because the Schwannoma I have is Not on the Acoustic Nerve. Sorry if I confused anyone. But I am now researching this condition. I think it is very similar to NF2 but it is not herediatry according to Mia M. Dianne

[Guest guest]

Hi Marie,

If Dianne has ONLY TWO tumours and NEITHER are on the VS nerve then it is called Schwannomatosis - but then Dianne is only one or two Central nerve tumours away from NF2. Lets hope that Dianne never develops any more....

.....

Re: Why?As you know I was recently diagnosed with NF2. I went to Boston - Mass General - and saw Mia MacCollin. She told me that my tumor is actually on my Trigeminal nerve and not the acoustic nerve and said my diagnosis is actually Schwannomatosis - do any of you know much about that? I was very thankful this is not a hereditary condition. I have 2 tumors to deal with and I am definitely having Fractionated Stereotactic Radiosurgery on the one in the brain and I hope to have it on the one in my neck. I want to know if I have ANY tumors - no matter how small - so I can make decisions on how to deal with them before I become symptomatic. I think we need to seek treatments that are right for us, when they are right for us. I believe we need to be very involved in our health care and work closely with our doctors. The tumor in my brain is 1.5 cm. I was told I could wait 6 months and have another MRI - I am not going to do that. I am already having symptoms - I don't want to have permanent damage. I, for one, want to take care of these while they are small. Dianne

[Guest guest]

This is really confusing my little pea brain; then if she has tumors, but they are NOT on the vestibular nerve, but she is diagnosed as having Schwannomatosis; I understood that acoustic neuromas were actually incorrectly named, they should be called vestibular schwannomas; so is the difference that she does not have VESTIBULAR schwannomas?? Sorry if I am beating this to death, I am just trying to understand; after all some doc my ask me sometime and I need to look intelligent!! LOL Marie

Re: Why?

Hi Marie,

If Dianne has ONLY TWO tumours and NEITHER are on the VS nerve then it is called Schwannomatosis - but then Dianne is only one or two Central nerve tumours away from NF2. Lets hope that Dianne never develops any more....

.....

Re: Why?As you know I was recently diagnosed with NF2. I went to Boston - Mass General - and saw Mia MacCollin. She told me that my tumor is actually on my Trigeminal nerve and not the acoustic nerve and said my diagnosis is actually Schwannomatosis - do any of you know much about that? I was very thankful this is not a hereditary condition. I have 2 tumors to deal with and I am definitely having Fractionated Stereotactic Radiosurgery on the one in the brain and I hope to have it on the one in my neck. I want to know if I have ANY tumors - no matter how small - so I can make decisions on how to deal with them before I become symptomatic. I think we need to seek treatments that are right for us, when they are right for us. I believe we need to be very involved in our health care and work closely with our doctors. The tumor in my brain is 1.5 cm. I was told I could wait 6 months and have another MRI - I am not going to do that. I am already having symptoms - I don't want to have permanent damage. I, for one, want to take care of these while they are small. Dianne

[Guest guest]

I think a Schwannoma is a Schwannoma ..they are one of the characteristics of

both diseases. I'm not sure if the requirement for a VS schwannoma is that it's

actually on the Acoustic Nerve itself, it may just be the name for tumors in

that area. I'm not a neurosurgeon so I couldn't say for sure tho

Pete

> I was under the understanding vestibular schwannoma was the correct

terminology for an acoustic neuroma; The diagnosis Schwannomatosis is actually

a different disorder? Marie

> Re: Why?

>

>

> Then you have a vestibular schwannoma?

>

> I am sorry I may have not said what I wanted to say the right way. I was

> diagnosed with NF2 about 5 weeks ago. I went to Boston and saw Mia

MacCollin

> and she changed the diagnosis to Schwannomatosis because the Schwannoma I

> have is Not on the Acoustic Nerve. Sorry if I confused anyone. But I am

now

> researching this condition. I think it is very similar to NF2 but it is not

> herediatry according to Mia M. Dianne

>

[Guest guest]

Dianne,

We have not considered FS because I do not think my daughter would tolerate

it. She is too traumatized by all these procedures. Because all the nurses

and doctors are so good with her, I guess she does better with surgery.

ly, the doctors do not rush to do surgery on Anne's tumors. We are

seeking a good quality of life and they seem to feel that there are so many,

there is no end to surgery for her. Surgery becomes debilitating. In fact,

now her airway is in question so the next one will be questionable. Anne has

already declared she will not have another surgery. said NF2 sucks.

How true. Whether it be NF2 or Schwanommatosis, it attacks nerves, therefore

function, and takes away life function. We are trying Thalidomide. She has

had it for about 5 months. We hope that at the least it slows the growths.

As soon as we do the MRIs, we'll inform everyone of good or bad news.

Dianne, I regret to get to know you because of this disorder. It is a tough

road. You are in a good place with this Crew. It keeps me going to know

that there are other people who are tough, honest, courageous, compassionate

and understanding about this exceptional disorder. Please write me anytime.

Together we can be a great support and possibly bring treatment to the

picture. Love, Vicki

[Guest guest]

Caren,

You've had 26 surgeries. Amazing. Your spirit is exemplary. I hope this

last knee surgery is your very last. You are just too young for any more.

Love, Vicki

[Guest guest]

Ha Ha Ha Ha I think your intelligent.

You ARE correct that ANs are VSs.....

See if this quack can explain ... A person can have many Schwann cell tumours with none on/in the central nervous system (CNS). If this is the case, then to make sure that they are indeed schwannomas - a removal or biopsy of a tumour would have to be performed, establishing whether they are schwannomas or not. If they are schwannomas - then it would be called "schwannomatosis". People with schwannomatosis can have one or two CNS tumours, but that's all.

Otherwise as I said before they are only one or two CNS tumours away from NF2.

If for the sake of the hypothetical - if someone had two CNS tumours and after some time they developed a VS - definite NF2.

If a third CNS tumour (not VS) or a meningioma occurred then it could be classified as a definite possibility - NF2 -.....

As you know NF2 - IS - a CNS condition - sure we can and do have other schwannoma tumours - BUT - we must have CNS tumours ones to be diagnosed with NF2.

The "Golden" diagnosis for NF2 is Bilateral VSs for those of us who are "spontaneous". For those who have a parent with NF2, the diagnosis changes as we are looking for tumours, as soon as one come along in a sibling - NF2 -... .....

This is an up-date on the diagnosis of NF2. Look at ----- Additional criteria ------

Table 2 Diagnostic criteria for NF2 (these include the NIH criteria with additional criteria

Bilateral vestibular schwannomas, or

Family history of NF2, plus

(1) Unilateral VS, or

(2) Any two of: meningioma, glioma, neurofibroma, schwannoma, posterior subcapsular lenticular opacities.

Additional criteria

Unilateral (one)VS plus any two of: meningiorna, glioma, neurofibroma, schwannoma, and posterior subcapsular opacities. or

Multiple meningioma (two or more) plus unilateral VS or any two, of: glioma, neurofibroma, schwannoma, and cataract.

“Any two of” refers to individual tumours or cataract, not to tumour types.

Re: Why?As you know I was recently diagnosed with NF2. I went to Boston - Mass General - and saw Mia MacCollin. She told me that my tumor is actually on my Trigeminal nerve and not the acoustic nerve and said my diagnosis is actually Schwannomatosis - do any of you know much about that? I was very thankful this is not a hereditary condition. I have 2 tumors to deal with and I am definitely having Fractionated Stereotactic Radiosurgery on the one in the brain and I hope to have it on the one in my neck. I want to know if I have ANY tumors - no matter how small - so I can make decisions on how to deal with them before I become symptomatic. I think we need to seek treatments that are right for us, when they are right for us. I believe we need to be very involved in our health care and work closely with our doctors. The tumor in my brain is 1.5 cm. I was told I could wait 6 months and have another MRI - I am not going to do that. I am already having symptoms - I don't want to have permanent damage. I, for one, want to take care of these while they are small. Dianne

[Guest guest]

Gee, you may like to ask MacCollin why she is contradicting herself.

This is taken from NNFFOrg blurb about schwannomatosis.

" > Because schwannomatosis has been a relatively recent " discovery, " there

are no

> set schedules of tests that all patients should undergo. The tumors of

> schwannomatosis are relatively slow growing, and probably only need to be

> imaged when symptoms change. Schwannomatosis is a genetic condition, but may

> often skip generations so that more distant family members with unexplained

> neurological symptoms and/or unexplained pain should be evaluated for the

> possibility that they are also affected.

>

> We gratefully acknowledge the contributions to this page from Dr. Mia

> MacCollin, Harvard Medical School/Massachusetts General Hospital.

> Return to top "

also I have a problem with the criteria/diagnosis of nf2 ......which they

keep changing anyway, and is after all just an agreed definition of the

amount of 22 mutation that puts you in the poo.

BECAUSE All recent research confirms schwannomas ALWAYS have mutations of

chromosome 22. ALWAYS.

However for meningiomas, they are still finding different genetic

culprits, amongst other cofactors......

>

on 19/5/01 2:25 PM, DiSpads@... at DiSpads@... wrote:

> I am sorry I may have not said what I wanted to say the right way.  I was

> diagnosed with NF2 about 5 weeks ago.  I went to Boston and saw Mia MacCollin

> and she changed the diagnosis to Schwannomatosis because the Schwannoma I

> have is Not on the Acoustic Nerve.  Sorry if I confused anyone.  But I am now

> researching this condition.  I think it is very similar to NF2 but it is not

> herediatry according to Mia M.  Dianne

>

[Guest guest]

Vicki - I am beginning to realize that this disease does indeed SUCK (as would say). I am not liking this one bit - however - I am 48 years old and it just breaks my heart to read about all of the people in the Crew who have had NF since they were much younger than I and for all of the parents who have children with it. I can't even begin to imagine what they are going through or have been through. As a parent myself - that was by far my biggest fear - that I may have passed it on to one of my children. As far as I understood from Mia M. - Schwannomatosis is NOT hereditary. I believe it is similar in many ways to NF2. I am getting an idea of what I may be in store for. I do want to know - I can deal better with things if I am aware of them. I will add the members of "Crew" to my prayer list - God Bless all of us. Love - Dianne

[Guest guest]

Rosemary - that information you passed along from Mia MacCollin certainly does contradict what she has told me. She was very clear with me and said Schwannomatosis is NOT hereditary. My daughter wants to get pregnant again and was waiting until I saw Mia before starting to try. Mia even said she would talk to my daughters Obstetrician if she wanted her to. That article certainly doesn't coincide with what she told me. I wonder if that is an older article and they have changed their thinking. I am going to e-mail Mia M. because I also want to know if there is a possibility if I could get an AN and my diagnosis would be changed again. The journals are very right - there is very little certainty with this disease. Thanks for the info Rosemary - I appreciate it. I will let you know what Mia M. responds - Dianne

[Guest guest]

Dianne, It is possible they have changed their info since MacCollin wrote

this on the NNFF site.....but they also may change it again.

I say this over and over again, but the book is still being written with

nf2, and I don't know anything about schwannomatosis, but it sounds like it

is even further in the dark. So there are no absolutes.

I would wonder also about her certainty, when you could develop more tumors

later as well.

Last year MacCollin considered it " very likely " my son has nf2, even though

he does not comply with all the diagnostic criteria. I agree with MacCollin

in our case.....

Can I just suggest that your daughter could have genetic counselling and

screening, although I think this may only be possible for nf2 and not

schw-----. Without the mutation, your daughter would be no more at risk than

the general population. I would be interested in what MacCollin has to say,

keep us all informed.

20/5/01 12:04 AM, DiSpads@... at DiSpads@... wrote:

> Rosemary - that information you passed along from Mia MacCollin certainly

> does contradict what she has told me. She was very clear with me and said

> Schwannomatosis is NOT hereditary. My daughter wants to get pregnant again

> and was waiting until I saw Mia before starting to try. Mia even said she

> would talk to my daughters Obstetrician if she wanted her to. That article

> certainly doesn't coincide with what she told me. I wonder if that is an

> older article and they have changed their thinking. I am going to e-mail Mia

> M. because I also want to know if there is a possibility if I could get an AN

> and my diagnosis would be changed again. The journals are very right - there

> is very little certainty with this disease. Thanks for the info Rosemary - I

> appreciate it. I will let you know what Mia M. responds - Dianne

>

[Guest guest]

, if you radiate theres no gaurentee it will work and supposing it doesn't work, and therefore needing surgery anyway, the surgery becomes more risky because of scar tissue left from radiation.

This is possibly a myth. I attended a symposium in Houston, TX a few years ago. ALL of the dr's there one being a very highly regarded neurosurgeon, actually said there is NO difference in tumor removal on ppl that have had radiation. It's hard to get out no matter what, the scar tissue doesn't make any difference according to 4 of the dr's there. (The reason I believe this is true is bc the neurosurgeon there said he was obviously pro surgery, but had done quite a few tumor removals on ppl that had radiation that did not work. He said there was no difference at all. ) When I went back to HEI after the symposium I asked Dr. Brackmann the same thing. He was wishy washy about it, but basically said it's different for everyone some tumors are harder with NO radiation at all just bc that person is different. So again, I think it's an individual decision, but I always get a second opinion. Yes, were putting our bodies and lives in the hands of these dr's, but when it comes down to it, they're just people like me and you. Some will agree and some won't so whatever works best for you )

Love always,

[Guest guest]

Jennette

Being attacked (off the crew) is very unfair. This is an open forum and

questions like this one in particular, is very important. I've just written

a long reply which I deleted. But the short (shorter) of it is:

I wasn't diagnosed until 54 and symptomatic, but quite frankly I'm not sure

how I would have

coped knowing that the tumours were just sitting there, had they been

detected when I was 30 or 31 like my boys.

With 31, he believes Knowledge is POWER. He has had full head/spine

MRI and has small spinal tumours.

Brendon 30, had his head MRI, but not his spine. I will leave it up to him

now. He believes " What you don't know, won't hurt you " . His fiancé is a

Intensive Care Sister and her mother is also a Nurse. They love my son and

will make the right decision when necessary.

The boys know all about the Crew. I discuss our e-mails with them. When/If

the time comes and they have to make a vital decision, I will encourage them

to discuss it with the crew direct. Well Jennette, that how this Aussie

family is handling it's NF2.

How are you going managing now? Are you in a lot of pain, or is that just

an ongoing thing that we learn to live with?.

ine

Re: Why?

> OK. I've already been attacked (off the crew). Folks, I never said I

> wanted or didn't want to know in my post, I was simply " asking " the

> question. It's a question I'm just very interested in hearing the

answers

> to. If you'd prefer to email me personally, my address is

> jennette@...

>

> ....and if you must know... yes, I'd like to know where they are. But

> sometimes knowing can be very stressful, and some crewbies have claimed

> stress produces tumor growth. I find the question interesting. I'm just

> curious.

>

> Jennette

>

>

>

>

>

>

[Guest guest]

Jeannette,

I think the " why " is because it's easier to treat when

found earlier. In fact, I've read that some people

have not lost their hearing to the degree of profoundness

when the tumors were found early. I would think that

this would be true of any of the tumors. Just my

2 cents.

R

[Guest guest]

Rosemary,

This entry stating that schwanomas grow relatively slowly demands my

response. Anne's are anything but slow. Slow relative to what a race car?

Just joking. This is all very nebulous so nothing is cut and dry. Vicki

[Guest guest]

Dianne,

Thanks for your note. I understand your desire to be well informed. But

just remember that it is not the same for any one person and schwanommatosis

is so unusual, one in 100,000, that it may rare up in a crazy way. Yes, it

has been hard to be a parent and stand by and watch this disorder take our

daughter down especially since she was already developmentally challenged. I

do not tell her all the yukky stuff expected because it would get in the way

of her enjoyment of life. I believe the immune system works better when

having pleasure, not sadness. I guess we must take life as it comes. For

you, enjoy and cherish each moment because that is all any of us have. Be

well. Vicki

[Guest guest]

who would attack a sweet innocent person like you??? I consider you one

of my role models and woulg stand, if I could ,to defend you.

Joanie

[Guest guest]

Jennette,

Our son had an atypical meningioma at C-1 which was beginning to press on

the spine. When we found out about the tumor (at initial diagnosis), he was

playing 8th grade football. We were glad to have found out before any

serious injury occurred. Of course he may never have received any such

injury. However, football is very physical and since the tumor was already

pressing on the spine, we feel very blessed we found out and could take him

out of the game without paralysis or injury.

Just my 2 cents!

Rhonda

Re: Why?

> OK. I've already been attacked (off the crew). Folks, I never said I

> wanted or didn't want to know in my post, I was simply " asking " the

> question. It's a question I'm just very interested in hearing the

answers

> to. If you'd prefer to email me personally, my address is

> jennette@...

>

> ....and if you must know... yes, I'd like to know where they are. But

> sometimes knowing can be very stressful, and some crewbies have claimed

> stress produces tumor growth. I find the question interesting. I'm just

> curious.

>

> Jennette

>

>

>

>

>

>

[Guest guest]

Marie Drew -- Not true in Jim's case, some times it is a spontaneous

mutation. Now as for what it response to....... your guess is as good as

mine.

From Florida where the sun is shining and shining and shining.

Faith, Hope, & Love,

Anne