my husbands first neurosurgeon appt

[Guest guest]

,

Not to sound nosy but how old is your husband?? All spinal surgery is risky

but there are alot of good outcomes. He will need time to rehab but hopefully

he will be ok.

I am concerned about your doctors sense of urgency though. Most of these tumors

are very slow growing. Where in his spine do they want to do surgery, neck??

What insurance do you guys have? my doc is on a lot of plans, and no of course

no one coud afford to pay this kind of thing w/o ins because that rtype of

surgery and hosptial stay is beyond normal doc fees, you really need insurance.

[Guest guest]

,

Why don't you ask if he would like to talk on this lsit too. He will have

to

be active in his own treatments too. I am 30 and like I said, I live just a

few

miles from you, we are near countryside in Clearwater. Many of us have had

cervical spine srgery. It is probaby the riskiest of all. Does you neuro

understND

NF2 I mean these things usually grow so slowwwwww, and sometimes no treatmewnt

is

better than surgery. On the other hand you said he said it was life

threatening?

wow. Notto scare you even more, but mosto f us are completely deaffrom the

acoustic

neuromas. If should ever lose any or all of his hhearing he is going to

need

support -- and a new means of communication. Most us sign. Not all of us of

course. Anyhow, we have an ALDA chapter right here in pinellas, iti s a support

group for late-deafened adults. I run the meetings once a month. we mainly

provide

social support but we have so many members who h ave become deaf in a variety f

ways that just getting to know one anothr is very beneficial

[Guest guest]

Henrion wrote:

>

>

>

> , try to relax. I had a bad spinal tumor removed in 1984 at age 14

> itwasinthecervicalspine. VERY RISKY. I came out fine. My neuro is Dr. Jack

> Maniscalco in Tampa FL. I was told then he is one of the best in our area

> and still is. He has operated on me 4 times with success.

>

> in Clearwater FL

>

> blueyes7@... wrote:

>

> > From: blueyes7@...

> >

> > we went today. The acoutic neuromas can wait, they

> > are small and ok right now.

> > The spinal cord tumors are another matter. He said

> > they are expanding the spinal cord. He ordered more

> > Mris and an neuro ear and eye exam. My husband asked

> > if surgery could wait until after Christmas. He said no.

> > We have two young sons. I don't understand what the

> > emergency is. We only found out because it was in

> > the family and if we didn't find out before Christmas

> > than it would have waited. I am more frightened then ever

> > The doctor said the tumors are danger to life and limb

> > Anyone have tumors in there spinal cord removed successfully.

> > Also does a second oppinion still apply. He says

> > he has dealt with this before. Seems to know what

> > nf is? Any suggestions comments anything.I am Not only

> > worried for my husband. I am to the point of

> > hysterics.

> > Thank you all for your support

> > s wife

> >

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

> > See what's happening for NF2Con 2000!

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

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

> See what's happening for NF2Con 2000!

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

Dear ,

Thanks for your response. My husbands insurance does not have that

doctor. We can not afford to go out and pay ourselves. We went to see

Dr Mellman. He is affliated with St Joes and Tampa General. Have you

ever heard of him? They seem very confident. They did say that it is

very risky. But yet, they seemed confident. Im a big baby anyway and

this is scaring me t0 death>

Thanks for your help

[Guest guest]

Henrion wrote:

>

>

>

> ,

>

> Not to sound nosy but how old is your husband?? All spinal surgery is risky

> but there are alot of good outcomes. He will need time to rehab but hopefully

> he will be ok.

>

> I am concerned about your doctors sense of urgency though. Most of these

tumors

> are very slow growing. Where in his spine do they want to do surgery, neck??

>

> What insurance do you guys have? my doc is on a lot of plans, and no of

course

> no one coud afford to pay this kind of thing w/o ins because that rtype of

> surgery and hosptial stay is beyond normal doc fees, you really need

insurance.

>

>

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

> See what's happening for NF2Con 2000!

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

Dear cindy,

My husbands tumors are in the cervical spine and junction. The spinal

cord is expanded. We have great west insurance. My husband is 36.

His tumors are quite large 2.5 cm 2.0 cm 1.5 and 1 cm

Thanks

[Guest guest]

we went today. The acoutic neuromas can wait, they

are small and ok right now.

The spinal cord tumors are another matter. He said

they are expanding the spinal cord. He ordered more

Mris and an neuro ear and eye exam. My husband asked

if surgery could wait until after Christmas. He said no.

We have two young sons. I don't understand what the

emergency is. We only found out because it was in

the family and if we didn't find out before Christmas

than it would have waited. I am more frightened then ever

The doctor said the tumors are danger to life and limb

Anyone have tumors in there spinal cord removed successfully.

Also does a second oppinion still apply. He says

he has dealt with this before. Seems to know what

nf is? Any suggestions comments anything.I am Not only

worried for my husband. I am to the point of

hysterics.

Thank you all for your support

s wife

[Guest guest]

, try to relax. I had a bad spinal tumor removed in 1984 at age 14

itwasinthecervicalspine. VERY RISKY. I came out fine. My neuro is Dr. Jack

Maniscalco in Tampa FL. I was told then he is one of the best in our area

and still is. He has operated on me 4 times with success.

in Clearwater FL

blueyes7@... wrote:

> From: blueyes7@...

>

> we went today. The acoutic neuromas can wait, they

> are small and ok right now.

> The spinal cord tumors are another matter. He said

> they are expanding the spinal cord. He ordered more

> Mris and an neuro ear and eye exam. My husband asked

> if surgery could wait until after Christmas. He said no.

> We have two young sons. I don't understand what the

> emergency is. We only found out because it was in

> the family and if we didn't find out before Christmas

> than it would have waited. I am more frightened then ever

> The doctor said the tumors are danger to life and limb

> Anyone have tumors in there spinal cord removed successfully.

> Also does a second oppinion still apply. He says

> he has dealt with this before. Seems to know what

> nf is? Any suggestions comments anything.I am Not only

> worried for my husband. I am to the point of

> hysterics.

> Thank you all for your support

> s wife

>

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

> See what's happening for NF2Con 2000!

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

[Guest guest]

Hi in FL -

Tell your husband to join the crew - it is a great place for information on

NF2 and treatments. Everyone on the list has been extremely helpful and

supportive. Sometimes we get great jokes too. )

I forgot to mention to you, although I guess this might be useful for

everyone, that it might be a good thing if your husband ( is his name,

right?) think about the possibility of eventually becoming deaf, and having

decreased mobility. Don't let this scare you, NF2 is scary enough! These are

things that I was advised to consider back in '87 when I was diagnosed with

NF2. I followed the advice and went back to school to get my degree, which

was a smart move because in my job (software engineer) I don't do any

physical stuff and with all the computers and email around, my deafness is

not a big problem. I have a good job and can still make a decent living

despite deafness and physical handicaps.

Of course, deafness is not guaranteed, several of the crewbies can hear.

After two AN surgeries I had good hearing (with an aid) for about 10 years.

With all of the advances in microsurgery and other treatments, NF2 can be

pretty manageable for a long time even if you've got a bad case of it. The

outlook gets better all the time. But, as they say in the boy scouts, be

prepared.

I hope this helps.

Mike A in Ft. Lauderdale

[Guest guest]

>Dear cindy,

>My husbands tumors are in the cervical spine and junction. The spinal

>cord is expanded. We have great west insurance. My husband is 36.

>His tumors are quite large 2.5 cm 2.0 cm 1.5 and 1 cm

>Thanks

>

,

The tumors may be large but not overly so. I think a large tumor is one over

3 cm. The doctor will know better but as someone suggested, you don't have

to rush into anything since these tumors have likely been there a long time

and another opinion by a doctor is helpful.