Re: Children NF2

[Guest guest]

I think Hawkins grandson (age 9) has a 3 mm; I know for us adults that is small, but I think said Dr Brackman said they have found in children the tumors grow faster; and they might advise that if they get it that small they could try a middle fossa. Marie

Re: Children NF2

Hi ! Just wanted to be sure your 4mm stated size was not a typo and you meant 4cm. Yes, I just reveiwed MGI's web site today and that sounds a viable option but believe HEI has upheld their reputation. If 4cm. I'd be headed for HEI. If 4mm, seems you can explore options with alittle bit more breathing room. Oh this disease ........

Russ

Ceret1@... wrote: Crew-Most difficult news was learning (just yesterday) our 6 year old has a 4mm tumor in one ear and "suspicious" shadow in the other. Much conversation with team at Beth Israel. One doctor did not hesitate in saying we should be contacting House Ear Institute ASAP since they have the most experience in dealing with children having NF2. I had spoken to Steve Otto years ago regarding my wife so I will contact him again regardng my daughter Hannah.Living in Brooklyn, it is often difficult getting in and out of Manhattan for all of my wife's appointments. Hard to imagine (money, time off from work, etc) dealing with doctors on the other coast. Of course, if that is what is necessary we'll figure a way to do it. I do remember Massachucette's General having a large neuro program. Years ago exchanged some e-mails with Mia McCullum. I will do this again,. Has/does anyone have a child being treated there or any other large facility with much experience?Lots to do....and think about. Ceretti

[Guest guest]

You know, though, I don't know if NF2 is something that I would want to

use the average to guide my decisions. There's probably more to 's

circumstance than that, but it made me think about this anyhow and I thought

I would share it. Everyone's different and I would ask the doctor

how many young (pre-adolescent) kids they have watched and followed over

several years with MRIs to track the rates of growth before there has been

any surgical intervention (thinking of how many reports lately have talked

about increased growth in other tumors after getting one out...).

I think it's a reasonable question because doctors are really good at convincing

us with their theories that they really believe in, and their theories

are sometimes grounded more in wishful thinking and what they truly desire

for us (many of them do have hearts) than what has been shown with experience.

There probably are children with really fast growing tumors that young,

and there probably are some with slower-growing tumors. I'd think

the doctor would use the individual to support a decision for surgery,

and not an average. I thought the reasoning that to go in and get

these when they are tiny and before they do any damage was reasonably convincing,

but they the doctors used that to appeal to parents' wishes to save their

child's hearing, without fully thinking of NF2 as a total body condition

that a child will have their whole life. I kind of wonder when my

tumors first appeared... like if we had been doing MRIs since I was in

5th grade (umm, about 10 years old?) and having severe headaches and a

couple ER visits for weird vision stuff and nausea chalked off to migraines...

and already had the vision hallmarks of NF2 and cafe au lait spots, would

we have seen small tumors? I did not start to lose my hearing until

I was 15, and only then had an MRI. I don't know, what do you guys

think? Am I looking at this from the wrong angle? I am speaking

more generally here for parents out there that have expressed recently

that they're facing decisions for their children. I know 's

surgery is set and am already concentrating on a positive outcome for him.

Love and Hugs,

Marie Drew wrote:

I think

Hawkins grandson (age 9) has a 3 mm; I know for us adults that is small,

but I think said Dr Brackman said they have found in children

the tumors grow faster; and they might advise that if they get it that

small they could try a middle fossa. Marie

[Guest guest]

,

Good luck in your decisions regarding your daughter. I know how hard

those decisions can be. HEI and MGH are definitely good places to go

for their opinions if you can go to both. Good luck with your wife,

too. Sorry I can't be of more help.

> Crew-

>

> Most difficult news was learning (just yesterday) our 6 year old

has a 4mm

> tumor in one ear and " suspicious " shadow in the other. Much

conversation

> with team at Beth Israel. One doctor did not hesitate in saying we

should be

> contacting House Ear Institute ASAP since they have the most

experience in

> dealing with children having NF2. I had spoken to Steve Otto years

ago

> regarding my wife so I will contact him again regardng my daughter

Hannah.

>

> Living in Brooklyn, it is often difficult getting in and out of

Manhattan for

> all of my wife's appointments. Hard to imagine (money, time off

from work,

> etc) dealing with doctors on the other coast. Of course, if that

is what is

> necessary we'll figure a way to do it. I do remember

Massachucette's General

> having a large neuro program. Years ago exchanged some e-mails

with Mia

> McCullum. I will do this again,. Has/does anyone have a child

being treated

> there or any other large facility with much experience?

>

> Lots to do....and think about.

>

> Ceretti

[Guest guest]

Carol,

I don't know about other tumors and all, but the reason Dr. Slopis said to wait on Lee's AN's is because he said the Acoustic nerve is very sensitive and just TOUCHING it to remove the tumor could cause hearing loss. Waiting this past 6 years has given the medical World time to improve treatment of AN's as well.

Donna

This is something to this day that I don't understand. Why not remove while small, before it tangles into other things etc. Seems to me we could save much more body if this stuff wasn't allowed to grow so large.

Just befuddled...Carol

[Guest guest]

I think you have a good point; I like Donna's docs manner, in that you don't operate if you don't have to; I understand Brackman's theory that the smaller the tumor, the better the chance to save hearing; but as says, we have to think of the OVERALL condition, not JUST the hearing, particularly when it occurs in a young child. And it sure does seem like surgery begets surgery? Just worth questioning, to be sure they are looking at the OVERALL condition of NF. Marie

Re: Children NF2

You know, though, I don't know if NF2 is something that I would want to use the average to guide my decisions. There's probably more to 's circumstance than that, but it made me think about this anyhow and I thought I would share it. Everyone's different and I would ask the doctor how many young (pre-adolescent) kids they have watched and followed over several years with MRIs to track the rates of growth before there has been any surgical intervention (thinking of how many reports lately have talked about increased growth in other tumors after getting one out...). I think it's a reasonable question because doctors are really good at convincing us with their theories that they really believe in, and their theories are sometimes grounded more in wishful thinking and what they truly desire for us (many of them do have hearts) than what has been shown with experience. There probably are children with really fast growing tumors that young, and there probably are some with slower-growing tumors. I'd think the doctor would use the individual to support a decision for surgery, and not an average. I thought the reasoning that to go in and get these when they are tiny and before they do any damage was reasonably convincing, but they the doctors used that to appeal to parents' wishes to save their child's hearing, without fully thinking of NF2 as a total body condition that a child will have their whole life. I kind of wonder when my tumors first appeared... like if we had been doing MRIs since I was in 5th grade (umm, about 10 years old?) and having severe headaches and a couple ER visits for weird vision stuff and nausea chalked off to migraines... and already had the vision hallmarks of NF2 and cafe au lait spots, would we have seen small tumors? I did not start to lose my hearing until I was 15, and only then had an MRI. I don't know, what do you guys think? Am I looking at this from the wrong angle? I am speaking more generally here for parents out there that have expressed recently that they're facing decisions for their children. I know 's surgery is set and am already concentrating on a positive outcome for him. Love and Hugs, Marie Drew wrote:

I think Hawkins grandson (age 9) has a 3 mm; I know for us adults that is small, but I think said Dr Brackman said they have found in children the tumors grow faster; and they might advise that if they get it that small they could try a middle fossa. Marie

[Guest guest]

This is something to this day that I don't understand. Why not remove while small, before it tangles into other things etc. Seems to me we could save much more body if this stuff wasn't allowed to grow so large.

Just befuddled...Carol

Re: Children NF2

I think you have a good point; I like Donna's docs manner, in that you don't operate if you don't have to; I understand Brackman's theory that the smaller the tumor, the better the chance to save hearing; but as says, we have to think of the OVERALL condition, not JUST the hearing, particularly when it occurs in a young child. And it sure does seem like surgery begets surgery? Just worth questioning, to be sure they are looking at the OVERALL condition of NF. Marie

[Guest guest]

well there are both pros and cons to that thinking; yes, it GENERALLY easier to remove while smaller; but who knows what deficits you will end up with from the surgery? So do you do surgery now, hope for the best, or do you wait as long as you can to avoid surgery and the accompanying deficits? Marie

Re: Children NF2

I think you have a good point; I like Donna's docs manner, in that you don't operate if you don't have to; I understand Brackman's theory that the smaller the tumor, the better the chance to save hearing; but as says, we have to think of the OVERALL condition, not JUST the hearing, particularly when it occurs in a young child. And it sure does seem like surgery begets surgery? Just worth questioning, to be sure they are looking at the OVERALL condition of NF. Marie

[Guest guest]

I agree...we don't know the risks but seems to me that even if the risks were percentage wise the same..there would be less risk while things are smaller?

For me...my doctor said if they had caught it when it was smaller, I would have retained most if not all my hearing. I would have taken the risk.

I do agree that overall health is an issue, but some of us are just sitting here waiting for these suckers to grow!!!

This is probably a stupid analogy but do we not slap the mosquito dead before he sucks our blood?

Carol

Re: Children NF2

well there are both pros and cons to that thinking; yes, it GENERALLY easier to remove while smaller; but who knows what deficits you will end up with from the surgery? So do you do surgery now, hope for the best, or do you wait as long as you can to avoid surgery and the accompanying deficits? Marie

[Guest guest]

Re: Children NF2

MGI's Website? How would I get there Russ, do you have the address handy? Would you mind passing it on to me?

Sheryn

__________________________________

Hi ! Just wanted to be sure your 4mm stated size was not a typo and you meant 4cm. Yes, I just reveiwed MGI's web site today and that sounds a viable option but believe HEI has upheld their reputation. If 4cm. I'd be headed for HEI. If 4mm, seems you can explore options with alittle bit more breathing room. Oh this disease ........

Russ

Ceret1@... wrote: Crew-Most difficult news was learning (just yesterday) our 6 year old has a 4mm tumor in one ear and "suspicious" shadow in the other. Much conversation with team at Beth Israel. One doctor did not hesitate in saying we should be contacting House Ear Institute ASAP since they have the most experience in dealing with children having NF2. I had spoken to Steve Otto years ago regarding my wife so I will contact him again regardng my daughter Hannah.Living in Brooklyn, it is often difficult getting in and out of Manhattan for all of my wife's appointments. Hard to imagine (money, time off from work, etc) dealing with doctors on the other coast. Of course, if that is what is necessary we'll figure a way to do it. I do remember Massachucette's General having a large neuro program. Years ago exc Yahoo! Finance - Get real-time stock quotes

[Guest guest]

Hi Sheryn! It was MGH's website and I just ran across it while surfing. I think it would come up easily enough if you just typed it in, say, Massacheusette's General Hospital. I think I used the search words radiation, DNA, cancer and maybe once included FSR or gamma knife. Sorry to not be of more help. You know one can read on this forever if one stays at it.

Russ

Sheryn wrote:

Re: Children NF2

MGI's Website? How would I get there Russ, do you have the address handy? Would you mind passing it on to me?

Sheryn

__________________________________

Hi ! Just wanted to be sure your 4mm stated size was not a typo and you meant 4cm. Yes, I just reveiwed MGI's web site today and that sounds a viable option but believe HEI has upheld their reputation. If 4cm. I'd be headed for HEI. If 4mm, seems you can explore options with alittle bit more breathing room. Oh this disease ........

Russ

Ceret1@... wrote: Crew-Most difficult news was learning (just yesterday) our 6 year old has a 4mm tumor in one ear and "suspicious" shadow in the other. Much conversation with team at Beth Israel. One doctor did not hesitate in saying we should be contacting House Ear Institute ASAP since they have the most experience in dealing with children having NF2. I had spoken to Steve Otto years ago regarding my wife so I will contact him again regardng my daughter Hannah.Living in Brooklyn, it is often difficult getting in and out of Manhattan for all of my wife's appointments. Hard to imagine (money, time off from work, etc) dealing with doctors on the other coast. Of course, if that is what is necessary we'll figure a way to do it. I do remember Massachucette's General having a large neuro program. Years ago exc Yahoo! Finance - Get real-time stock quotes

[Guest guest]

I think with ops NF tumors grow faster with repeat occurrences:( I think thats why its better to waitttttttttttttt:( Does make sense to get in there and get it out IF that was it. What we are dealing with is not like that tho, and those laws just dont apply:( Ive talked to several that have had AN surgically removed (brain ops suck bad!!) , only to have new ones regrow to the old size within a year!! Scary stuff:( Ill not put my kids under the knife til necessary~~Lowi

Re: Children NF2

I think you have a good point; I like Donna's docs manner, in that you don't operate if you don't have to; I understand Brackman's theory that the smaller the tumor, the better the chance to save hearing; but as says, we have to think of the OVERALL condition, not JUST the hearing, particularly when it occurs in a young child. And it sure does seem like surgery begets surgery? Just worth questioning, to be sure they are looking at the OVERALL condition of NF. Marie

[Guest guest]

Yes, earlier would seem better but NF-2 tumors are somehow more difficult to get rid of. RE: ANs, they grow and intertwine around nerves in such a small, deep area and all the while are slowly replacing the original nerves, even given a small tumor. One simply has no exact way of knowing how fragile those nerves have become. We've read some pretty disheartening stories where supposedly simple hearing sparing middle fossa winds up in deafness. A story like this was just posted a few months ago Things all seem so variable and unpredictable and as my ENT put it, "We have no crystal balls or magic panaceas here". I recall sometimes those first words of The Hippocratic Oath, "First, do no harm". But oh so hard to merely watch your child suffer currently with portent of future sufferings. sigh........ I've said it to myself and doc so many times, "Oh NF-2, What to do?" I still try to give as many worries away as possible and trust many more intelligent then I and in the right place are looking at a cure for this. Sorry about the length of this.

Russ

CarolW wrote:

I agree...we don't know the risks but seems to me that even if the risks were percentage wise the same..there would be less risk while things are smaller?

For me...my doctor said if they had caught it when it was smaller, I would have retained most if not all my hearing. I would have taken the risk.

I do agree that overall health is an issue, but some of us are just sitting here waiting for these suckers to grow!!!

This is probably a stupid analogy but do we not slap the mosquito dead before he sucks our blood?

Carol

Re: Children NF2

well there are both pros and cons to that thinking; yes, it GENERALLY easier to remove while smaller; but who knows what deficits you will end up with from the surgery? So do you do surgery now, hope for the best, or do you wait as long as you can to avoid surgery and the accompanying deficits? Marie

[Guest guest]

HI CAROL

THIS IS WHAT DR BRACKMANN BELIEVES AT HEI THE SMALLER IT IS WHEN REMOVED THE BETTER THE CHANCE OF PRESERVING THE HEARING NERVE AND LESS DAMAGE TO SURROUNDING NERVES

CATHERINE

Re: Children NF2

I think you have a good point; I like Donna's docs manner, in that you don't operate if you don't have to; I understand Brackman's theory that the smaller the tumor, the better the chance to save hearing; but as says, we have to think of the OVERALL condition, not JUST the hearing, particularly when it occurs in a young child. And it sure does seem like surgery begets surgery? Just worth questioning, to be sure they are looking at the OVERALL condition of NF. Marie

[Guest guest]

GOOD QUESTION MARIE AND THERE IS NO CRYSTAL BALL THAT TELLS THE ANSWER

ITS A TOUGH SPOT TO BE IN

CATHERINE

Re: Children NF2

I think you have a good point; I like Donna's docs manner, in that you don't operate if you don't have to; I understand Brackman's theory that the smaller the tumor, the better the chance to save hearing; but as says, we have to think of the OVERALL condition, not JUST the hearing, particularly when it occurs in a young child. And it sure does seem like surgery begets surgery? Just worth questioning, to be sure they are looking at the OVERALL condition of NF. Marie

[Guest guest]

I LIKE THAT ANALOGY CAROL

FROM EXPERIENCE: 3 OF MY DAUGHTERS HAD AN SURGERIES IN 2000 ALL 3 ON BOTH SIDES ALSO 2 GRANDCHILDREN IN 2000

THE OUTCOME........

2 DAUGHTERS HAD THE HEARING PRESERVED ON BOTH SIDES

VERY LITTLE FACIAL NERVE DAMAGE

THE THIRD DAUGHTER LOST THE HEARING ON ONE SIDE VERY LITTLE FACIAL NERVE DAMAGE

THE 2 GRANDKIDS BELONG TO THE THIRD DAUGHTER AND SHE IS A R.N. THE GIRL HAD THE HEARING PRESERVED ON BOTH SIDES SHE WAS 18 AT THE TIME IS NOW 10 MARRIED A ND EXPECTING A BABY IN DEC

THE BOY WAS 14 AT THE TIME LOST THE HEARING ON ONE SIDE NO NOTICEABLE FACIAL NERVE DAMAGE

BOTH GRANDCHILDREN'S TUMORS WERE THE SIZE THAT ANTHONY'S IS 3MM OR LESS

CATHERINE

Re: Children NF2

well there are both pros and cons to that thinking; yes, it GENERALLY easier to remove while smaller; but who knows what deficits you will end up with from the surgery? So do you do surgery now, hope for the best, or do you wait as long as you can to avoid surgery and the accompanying deficits? Marie

[Guest guest]

when you fin d us a good mosquito spray rosemary please let us know, ill be 1st

in line.

rosemary wrote;

> better to use spray, so mosquito don¹t come..

> >

carol wrote:

> > here waiting for these suckers to grow!!!

> > This is probably a stupid analogy but do we not slap the mosquito dead

be> fore

> > he sucks our blood?

> > Carol

[Guest guest]

YOU HAVE THE INFORMATION CORRECT MARIE

I HAVE MIXED FEELINGS ABOUT THE WAIT OR GO AHEAD BUT........

THIS WAS MY EXPERIENCE

IN 1980 I HAD FIRST AN REMOVED ONLY LEARNED OF IT A MONTH BEFORE AND WAS DEAF IN THAT EAR WITHOUT KNOWING IT

IN 1985 A REOCCURRING ONE ON THE SAME SIDE AND AT THAT TIME THEY SEEN A VERY SMALL AN ON THE OTHER SIDE

MEDICAL DECISION WAIT AND WATCH MIGHT NEVER GROW HAHAH LOL

SO I GAINED

ED 6 YEARS OF IMPERFECT HEARING

AND LOST SOME OF THE FACIAL NERVE FUNCTION. AT THAT TIME DOCTORS DID NOT KNOW HOW TO REMOVE SMALL TUMORS AND PRESERVE HEARING

SO WHAT I AM SAYING IS I WOULD RATHER BE DEAF THAN LOOSE MY FACIAL NERVE

LAST SURGETY WAS 1991 DEAF AND HAVE ABI NOW

MY 2 CENTS WORTH

CATHERINE Re: Children NF2

Hi ! Just wanted to be sure your 4mm stated size was not a typo and you meant 4cm. Yes, I just reveiwed MGI's web site today and that sounds a viable option but believe HEI has upheld their reputation. If 4cm. I'd be headed for HEI. If 4mm, seems you can explore options with alittle bit more breathing room. Oh this disease ........

Russ

Ceret1@... wrote: Crew-Most difficult news was learning (just yesterday) our 6 year old has a 4mm tumor in one ear and "suspicious" shadow in the other. Much conversation with team at Beth Israel. One doctor did not hesitate in saying we should be contacting House Ear Institute ASAP since they have the most experience in dealing with children having NF2. I had spoken to Steve Otto years ago regarding my wife so I will contact him again regardng my daughter Hannah.Living in Brooklyn, it is often difficult getting in and out of Manhattan for all of my wife's appointments. Hard to imagine (money, time off from work, etc) dealing with doctors on the other coast. Of course, if that is what is necessary we'll figure a way to do it. I do remember Massachucette's General having a large neuro program. Years ago exchanged some e-mails with Mia McCullum. I will do this again,. Has/does anyone have a child being treated there or any other large facility with much experience?Lots to do....and think about. Ceretti

[Guest guest]

Well I would have to take issue with your doctor's blanket statement that "if we had caught it smaller, you would have retained your hearing" - it's not quite that simple, I would think. I mean obviously your CHANCES would be better, but I don't think it would be an assured thing? Just my opinion, Marie

Re: Children NF2

well there are both pros and cons to that thinking; yes, it GENERALLY easier to remove while smaller; but who knows what deficits you will end up with from the surgery? So do you do surgery now, hope for the best, or do you wait as long as you can to avoid surgery and the accompanying deficits? Marie

[Guest guest]

better to use spray, so mosquito don’t come..

agree...we don't know the risks but seems to me that even if the risks were percentage wise the same..there would be less risk while things are smaller?

For me...my doctor said if they had caught it when it was smaller, I would have retained most if not all my hearing. I would have taken the risk.

I do agree that overall health is an issue, but some of us are just sitting here waiting for these suckers to grow!!!

This is probably a stupid analogy but do we not slap the mosquito dead before he sucks our blood?

Carol

Re: Children NF2

well there are both pros and cons to that thinking; yes, it GENERALLY easier to remove while smaller; but who knows what deficits you will end up with from the surgery? So do you do surgery now, hope for the best, or do you wait as long as you can to avoid surgery and the accompanying deficits? Marie

[Guest guest]

you know , what I would like to also see is statistics on regrowth of tumors that are removed early/satisfactorily, like Donna’s heartbreaking experience of ‘winning’ (as much as we can beat the odds )and then finding yourself back with same size tumor a year later... would like to see this especially with children, because with SOME kids(and adults), with severe Nf2, you can have rapid growth.

I think this is relatively “NEW’ and optimistic thinking from HEI about better success with small tumors, take Vnerve as well etc, get it under 1cm etc., so wondering if they have factored this aspect into their optimistic belief in this approach Ie. IS HEI keeping track on regrowth of these tumors (nf2 ones) after early surgical intervention. A Donna put it, is buying one year of hearing in return for major surgery, worth it? who knows, if left alone that tumro may only have been slightly bigger? sorry Donna, to draw on your experience, but I have found it to be quite a revelation, and suspect these kind of stats with NF2 children are just beginning to emerge.

also, what about separating data on those who had complete resection of vestibular nerve as well, to avoid regrowth. (but over this past year or two , I have learnt (I think!) that this does not make the big difference that was hoped)

we really need that mosquito spray

YOU HAVE THE INFORMATION CORRECT MARIE

I HAVE MIXED FEELINGS ABOUT THE WAIT OR GO AHEAD BUT........

THIS WAS MY EXPERIENCE

IN 1980 I HAD FIRST AN REMOVED ONLY LEARNED OF IT A MONTH BEFORE AND WAS DEAF IN THAT EAR WITHOUT KNOWING IT

IN 1985 A REOCCURRING ONE ON THE SAME SIDE AND AT THAT TIME THEY SEEN A VERY SMALL AN ON THE OTHER SIDE

MEDICAL DECISION WAIT AND WATCH MIGHT NEVER GROW HAHAH LOL

SO I GAINED

ED 6 YEARS OF IMPERFECT HEARING

AND LOST SOME OF THE FACIAL NERVE FUNCTION. AT THAT TIME DOCTORS DID NOT KNOW HOW TO REMOVE SMALL TUMORS AND PRESERVE HEARING

SO WHAT I AM SAYING IS I WOULD RATHER BE DEAF THAN LOOSE MY FACIAL NERVE

LAST SURGETY WAS 1991 DEAF AND HAVE ABI NOW

MY 2 CENTS WORTH

CATHERINE Re: Children NF2

Hi ! Just wanted to be sure your 4mm stated size was not a typo and you meant 4cm. Yes, I just reveiwed MGI's web site today and that sounds a viable option but believe HEI has upheld their reputation. If 4cm. I'd be headed for HEI. If 4mm, seems you can explore options with alittle bit more breathing room. Oh this disease ........

Russ

Ceret1@... wrote:

Crew-

Most difficult news was learning (just yesterday) our 6 year old has a 4mm tumor in one ear and " suspicious " shadow in the other. Much conversation with team at Beth Israel. One doctor did not hesitate in saying we should be contacting House Ear Institute ASAP since they have the most experience in dealing with children having NF2. I had spoken to Steve Otto years ago regarding my wife so I will contact him again regardng my daughter Hannah.

Living in Brooklyn, it is often difficult getting in and out of Manhattan for all of my wife's appointments. Hard to imagine (money, time off from work, etc) dealing with doctors on the other coast. Of course, if that is what is necessary we'll figure a way to do it. I do remember Massachucette's General having a large neuro program. Years ago exchanged some e-mails with Mia McCullum. I will do this again,. Has/does anyone have a child being treated there or any other large facility with much experience?

Lots to do....and think about.

Ceretti

[Guest guest]

I just wanted to mention something on this thread of removing tumors while they are small. When we decided to surgically remove our son's tumors while they were small , HEI felt very confident of the success in retaining hearing but not just that ; but also , by removing the balance nerve, (where these tumors actually grow) there would likely be no regrowths of tumors. I would have to say that , that fact alone played a huge part in our decision.

So far, so good. His hearing has remained the same and no regrowths. I mainly wanted to mention this for the benefit of new members. I joined the crew as we were trying to make decisions and the info I got here was invaluable.

Diane

[Guest guest]

Hello Crew-

Thanks for all replies and insight...Obviously it is very unfortunate that

there are so many different opinions from docs, members etc., but hearing all

stories, beliefs and theories prompts thinking and it is always better to

have wide range of info when making decisions. Over the past five years the

Crew has been crucial to my understanding of NF2. It is also EXTREMELY

important docs know we have base of knowledge in order to ensure proper

consultations (although even with all info from crew it is hard to know docs

individual agendas). Keep info coming. Thanks again.

[Guest guest]

How long ago was your son's surgery? marie

Re: Children NF2

I just wanted to mention something on this thread of removing tumors while they are small. When we decided to surgically remove our son's tumors while they were small , HEI felt very confident of the success in retaining hearing but not just that ; but also , by removing the balance nerve, (where these tumors actually grow) there would likely be no regrowths of tumors. I would have to say that , that fact alone played a huge part in our decision. So far, so good. His hearing has remained the same and no regrowths. I mainly wanted to mention this for the benefit of new members. I joined the crew as we were trying to make decisions and the info I got here was invaluable. Diane

[Guest guest]

on this I am a little confused....isn’t it common practice for them to always remove balance nerve now, has been for year or three? in which case has anybody with balance nerve removed had regrowths?

sorry do not want to sound negative, each case is highly individual, but just want to know if there optimism about no regrowths and removing balance nerve has been demonstrated?R>

I just wanted to mention something on this thread of removing tumors while they are small. When we decided to surgically remove our son's tumors while they were small , HEI felt very confident of the success in retaining hearing but not just that ; but also , by removing the balance nerve, (where these tumors actually grow) there would likely be no regrowths of tumors. I would have to say that , that fact alone played a huge part in our decision.

So far, so good. His hearing has remained the same and no regrowths. I mainly wanted to mention this for the benefit of new members. I joined the crew as we were trying to make decisions and the info I got here was invaluable.

Diane

[Guest guest]

I had bilateral acoustic neuroma surgery (I guess that's what they 'used' to call it) in 1982 at HEI at the age of 12. I had my balance nerves removed (3/4 of the nerves - I think) during these procedures. My hearing was saved. I had no facial paraylsis (credit on the right side to an experimental tissue graft) and I bounced back quite well. The tumors that were removed were very tiny and were detected by a spinal tap (the CAT scan didn't show the tumors because they were too small) and these were pre-MRI use days. The reason I was checked for tumors was because of my mom and brothers having NF2.

21 years later I am now mostly deaf but due to new tumors-not regrowths (but how does one tell the difference)? I was able to talk on the phone this time last year so my hearing loss has come quickly.

Jodi B.

Re: Children NF2

on this I am a little confused....isn’t it common practice for them to always remove balance nerve now, has been for year or three? in which case has anybody with balance nerve removed had regrowths? sorry do not want to sound negative, each case is highly individual, but just want to know if there optimism about no regrowths and removing balance nerve has been demonstrated?R> I just wanted to mention something on this thread of removing tumors while they are small. When we decided to surgically remove our son's tumors while they were small , HEI felt very confident of the success in retaining hearing but not just that ; but also , by removing the balance nerve, (where these tumors actually grow) there would likely be no regrowths of tumors. I would have to say that , that fact alone played a huge part in our decision. So far, so good. His hearing has remained the same and no regrowths. I mainly wanted to mention this for the benefit of new members. I joined the crew as we were trying to make decisions and the info I got here was invaluable. Diane