Re: Re: 9th ,10th and 11th Cranial Nerve Tumor

[Guest guest]

Ah ,

What can I say? You're a sweetheart. Thanks VERY much for the info. Its a

great idea to go to both. Are appointments approximately 2 months? I am

giving my NS one more chance to do the referrals. Feb. 9th. Its been 6 wks

and he is to read me my MRI's. I picked them up the first wk and duplicted

the written and dropped everything off at his office. He insists he can ask

any questions for me. i say my questions are many and depend on the answers

I receive. I want to talk to them in person myself. I really cannot figure

him out. Yes, the government will pay for the surgery if Ont. says best to

go there or if their answer is similar to Edmonton. We never have travel

paid for out of country or province either. I am surprised Alta. does out of

Country. How many children do you have . How old are they?I hope none

of them have this disease. I have seen your name in the Connection,

and yes, I sure to miss Gray also. I have talked with ANAC and yes,

they suggested you, Gray mentioned Dr. Tator. I have talked with my

MP, My health ministers secretary, the college of Physicans and Surgeons,

The Provinces Insurance Branch, my client representative. I'm thinking they

don't believe that anyone can have this many tumors where I say and live. If

I could show someone my MRI's I'd get some help. Really no one knows

anything about this. I may have to fax everyone a copy. After the 9th I'll

be on this full time for results. It is believed the foreamen may be making

me deaf. The AN is only .6 cm. and should not be causing this significant a

loss. It will be interesting to hear what they say in Toronto. Thanks alot

. I feel so lucky to have all the crew. Everyone is so amazed I have

such a rare disease and we have so much contact with others. We,re like one

big close family. Seeing the crew in Vegas 2 years ago gave me the incentive

to at least try e-mail although I thought I couldn,t do it. I'm getting

better and enjoy it now. Even smile at some of my mistakes. My husband is

getting pretty good at correcting my errors. I'm starting to wandddeeeerrrr

aggggaaaiiinnn........... time to shut down. This is great finger dexterity!

GOOD NIGHT ALL.

Thanks !

Sheryn

-- Original

message -----

To: <NF2_Crewonelist>

Sent: January 31, 2000 7:16 PM

Subject: Re: Re: 9th ,10th and 11th Cranial Nerve Tumor

> From: ffusca@... ( A. Fusca)

>

> Hi Sheryn,

>

> I'm still here... alive and sorta well. I've been behind on my mail. My

wife

> was working afternoons last week so I had to take care of the kids and

it's

> hard to get on the computer with them around.

>

> It guess you would like to make a plan for handling your tumors. I think

it

> may be best to come to Toronto to see a couple of NS to give you an

opinion

> on what to do. I'm not sure why the Sask. NS has not referred you to

someone

> here yet. If the Toronto doctors can't handle your case, then go to HEI.

The

> reason I say come to Toronto first is because your Sask health plan should

> cover the costs for surgery in Ontario (assuming they can't do it in Sask

> which appears to be the case). If you go to HEI first without checking

> elsewhere in Canada, you may have to foot the bill yourself. I've toyed

with

> the idea of going to HEI myself and picking up the bill which I'm sure

would

> be more than $US 20,000.

>

> If the Toronto doctors can't do it, then Sask health care plan should pay

> for you to go to HEI. I am thinking of having GK on a tumor I have at the

> moment. We don't have GK in Canada yet and the Ontario Health care plan

has

> funded me for $US18,350 to go to Pittsburgh (those are medical costs

only -

> they will not fund travel or other costs). The point I am trying to make

is

> that if we don't have what you need in Canada, you should get funding to

go

> elsewhere. I think if you were to see Dr. Tator he would tell you your

> options and if it's best to go to HEI. See Dr. Rowed so you can compare

notes.

>

> You can try writing a very polite letter to your MP and explain the

> situation. A letter from your MP to the Sask NS will get him moving!! What

> you are trying to do is reasonable. Everyone has the right to demand a

> competent and experienced doctor. You even moreso because of the

complexity

> of your situation. Also contact the ANAC to explain your problem. They

have

> a 1-800 number. It's a shame Gray is not there anymore because she

has

> a great way with these things. But maybe there is someone there who can

> help. Perhaps they will refer you to me because I am still the ANAC NF2

contact!

>

> I hope this helps! Let me know if you have any questions or other idea.

Take

> care for now,

>

>

>

> >

> >

> >Hello Misha,

> >

> >I thought this would be the best method to try to include the crew. HEI

> >first called them Jugular Foreamen tumors in '97, area right next to the

> >spinal cord near the bottom. The R one was 1 1/2 cm in 1989 and the L was

1

> >cm. Now they are 4 1/2 cm and 4.2cm. I have been hounding this Sask NS

since

> >'89 about them. The words jugular and caritod in the same sentence could

not

> >be good in my mind. At first he constantly denied they were there. I

would

> >point out where on the written MRI, he would change the subject. Then he

> >told me they do many of them on babies. I thought slow growing on babies,

> >not likely, but if on babies, why not me. Last year I had a 2 month wait

> >till appointment and made an appointment in AB for as close to the same

time

> >as possible. He is the Sask Head of NS and said its got lots of room to

> >grow, Dr. Oldring said You should not remove it now till you absolutely

> >can't stand it and the pain. VERY RISKY TO REMOVE. I will eventually have

a

> >Very Difficult time swallowing, talking, likely pnemonia (fluid on

> >lungs),and on and on. To remove it would cause an intterruption in blood

> >flow causing permanent paralysis to my whole right side or death.The year

> >before I had asked Dr. Hitzelberger and Dr. Brackmann about it and they

said

> >they had done them and it would take 2 hours and there was a good

> >possibility I would loose my voice. After months of this NS screwing up

> >referrals to Ont. and LA I sit with a November scan showing slight but

> >continued growth on both. Sask NS isn't positive the L one is a foramen.

I

> >am told that GR is not a possibility because they radiated my AN's with

none

> >focused radiation in '89 so they gave the 2 and a Brainstem Glioma strong

> >radiation treatments at the same time. and the areas can't have more

> >radiation of any type. This is why I say we have 2 tier health already

for

> >we Manitoba and the Atlantis Provinces and Territories donb't offer the

same

> >care or expertise as the Big 4. Population equals quality. I,m sure

Montana

> >doesn't offer what HEI does. I understand the areas having the most

people

> >need the most to help and have the most money, but for serious problems

we

> >shouldn't have to beg to be sent where there is help. Dr. Oldring sent me

to

> >HEI, not Sask NS. He also told me to leave my AN's till very large. You

know

> >what. Writing this out has really helped me to see this clearly. The

problem

> >is the Sask. NS.

> >Now what to do? Any suggestions? , are you there? Do you think I

should

> >push to go to HEI again? This worry really wipes me out and my thinking

gets

> >confused. sigh..... Oh this is long. Sorry everyone.

> >

> >Sheryn

> >

> >

> >

> >

> > Re: 9th and 10th Cranial Nerve Tumor

> >

> >

> >> Hi Sheryn,

> >> I was told about my jugular tumors right after I was diagnosed

about 3

> >> years ago. The said I had three or four but that they were " teeny

tiny " .

> >The

> >> ENT saw them on the MRI that diagnosed me. He said that they were so

small

> >> that when I wanted to I could just have out patient surgery in his

office.

> >I

> >> also have a lot of problems swallowing. Things like bread or anything

dry,

> >> always feels stuck. I was told this was from AN surgeries I had, but

> >wouldn't

> >> surprise me if it was the tumors. I've never heard of them being called

> >> " foremans " what's the difference? 4 cm sounds rather large, has anyone

> >told

> >> you to get those out?? I think one of the crewbies told us a long time

ago

> >> his vocal cords were permanently paralyzed bc the DR's advised him to

wait

> >on

> >> the jugular tumors and they ended up waiting to long. Now he's got an

> >> extremely raspy voice. You may want to ask the crew since I don't have

> >much

> >> experience with this besides having them. I hope you can find some

answers

> >> you're looking for! Let me know when you decide what you will do, I'd

be

> >> curious and I need to figure out my options too.

> >> Thanks and I hope you're having a good day!

> >>

> >

> >

> >See what's happening for NF2Con 2000!

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

> >

> >

> >

>

>

> See what's happening for NF2Con 2000!

> http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

[Guest guest]

Hi and everyone,

It sounds like you have a beautiful family .

I had my appointment with my NS on wednesday. This wouldn't have the affect

on me that it does if I hadn't been riding him for 2 1/2 years when these

tumors hit 2 cm in size. Anyway, now he says the R jugular/caroitid ( 4.2

cm)is deep and pressing on the carotid and the R neuroma (4.4 cm) is closer

to the surface but over the 4.2, which he is not sure what it is but not

foreman or glomus. the one deep on the left is a jugular glomus and 3.5 cm

and the tumor at the c1,c2 is .2 cm........ These and the Brainstem Glioma

are the main concerns at this time and the neuroma must be removed to get to

the 4.2 carotid tumor on the R. Both must go in the same surgery, for the

4.2 is blocking the oropharyngeal airway, I have trouble speaking, voice,

and am chasing solids with fluids for they stick in the back of my throat.

This airway has been blocked since '96 MRI. He said Dr. Tator, Nedzelski,

and Rowed are cranial, which we all knew, and not alot of help for this,

best to have vascular. I would have thought possibly both. Dr. Gentilli was

apparently just here and I have a feeling this is the reason for his sudden

concern and attention to these. Has anyone that you or anyone seen, been to

Dr. Wallace or Dr. Guha. Have you been to them? What of Dr. Gentilli?

He wasn't sure they would want to do this and his pager went off and he left

before I got to ask what he meant. The growth has averaged .2 - .3 cm on

each of them last year, so no major panic as they are this large now I would

think, but he didn't do an extra set of MRI's so when he sends these to Ont.

as he plans, I don't have a set to take to HEI. This dr. took over 7 months

and I am not counting the 3 summer months, of my time now . I started to

chase him on this in May '99. as he hadn't filled my request for referral to

Dr. Wallace in '98 like he said he would, on more than 1 occasion. He has

always had excuses. I told him I want to talk to drs. in Ont. and take my

MRI's as I do everywhere else ie. Edmonton, LA, Boston for research. He

trained with the Ont. Drs. at Boston and knows these guys. I wonder if that

is why he is ssssoooo against my going to ask them questions. I told him I

have no intention of showing up and hopping directly onto an operating

table. Those days are gone with the early 90's. Edmonton and HEI are so

informative. I don't know what is with this guy, but my list is started for

the College. Alot that will help my health though, for he is the only one

that has even the slightest knowledge here. I went against his advice to

have my AN removed, MY BEST MOVE!!! He is a good surgeon but lousy bedside

manner. His arrogance is standing in the way of making him an even better

dr. In Dec. he said it was risky, now says it shouldn't be, but waffles when

quizzed. My hair would turn grey if it wasn't already! ....... Any

suggestions , , anyone? I know it may be time to be happy with

quantity as opposed to quality and that is why I was approaching the gov for

HEI. I hoped for there support at least psycologically, but he requested the

ABI, wrong, just an appointment for info.

Sheryn, who sent us this COLD weather? east? west? you can take that back!

Mmaaarrrnnnnniiiee??????

---- Original

Message -----

To: <NF2_Crewonelist>

Sent: February 8, 2000 4:02 PM

Subject: Re: Re: 9th ,10th and 11th Cranial Nerve Tumor

> From: ffusca@... ( A. Fusca)

>

> Hi Sheryn,

>

> We have 2 kids - a boy (Francesco) who is 4 and a girl (Brittania) who is

2.

> They are both lots of fun but lots of work too and very adorable

> (particularly when they are asleep!). We don't know if they have NF2. They

> don't really have any signs of it but I guess I didn't either at their

age.

>

> Looks like you covered a lot of angles on this. There is a lot of truth to

> what V. was saying. Your best option may be to 'do nothing'. I take

it

> this is what the Sask NS is telling you. I would assume he knows something

> (more than us anyway). It could be he just has no experience in this area.

> On the other hand, it may not be a good idea to let HEI do it just because

> they claim they can. I think even HEI would have to admit there are risks

in

> the operation. You are faced with quite a dilemma and I hope Dr. Tator or

> whoever you decide to see in Ontario can shed more light on the situation.

> Take care for now,

>

>

>

>

> >

> >

> >Ah ,

> >

> >What can I say? You're a sweetheart. Thanks VERY much for the info. Its a

> >great idea to go to both. Are appointments approximately 2 months? I am

> >giving my NS one more chance to do the referrals. Feb. 9th. Its been 6

wks

> >and he is to read me my MRI's. I picked them up the first wk and

duplicted

> >the written and dropped everything off at his office. He insists he can

ask

> >any questions for me. i say my questions are many and depend on the

answers

> >I receive. I want to talk to them in person myself. I really cannot

figure

> >him out. Yes, the government will pay for the surgery if Ont. says best

to

> >go there or if their answer is similar to Edmonton. We never have travel

> >paid for out of country or province either. I am surprised Alta. does out

of

> >Country. How many children do you have . How old are they?I hope

none

> >of them have this disease. I have seen your name in the Connection,

> >and yes, I sure to miss Gray also. I have talked with ANAC and yes,

> >they suggested you, Gray mentioned Dr. Tator. I have talked with my

> >MP, My health ministers secretary, the college of Physicans and Surgeons,

> >The Provinces Insurance Branch, my client representative. I'm thinking

they

> >don't believe that anyone can have this many tumors where I say and live.

If

> >I could show someone my MRI's I'd get some help. Really no one knows

> >anything about this. I may have to fax everyone a copy. After the 9th

I'll

> >be on this full time for results. It is believed the foreamen may be

making

> >me deaf. The AN is only .6 cm. and should not be causing this significant

a

> >loss. It will be interesting to hear what they say in Toronto. Thanks

alot

> >. I feel so lucky to have all the crew. Everyone is so amazed I have

> >such a rare disease and we have so much contact with others. We,re like

one

> >big close family. Seeing the crew in Vegas 2 years ago gave me the

incentive

> >to at least try e-mail although I thought I couldn,t do it. I'm getting

> >better and enjoy it now. Even smile at some of my mistakes. My husband is

> >getting pretty good at correcting my errors. I'm starting to

wandddeeeerrrr

> >aggggaaaiiinnn........... time to shut down. This is great finger

dexterity!

> >GOOD NIGHT ALL.

> >

> >Thanks !

> >Sheryn

> >

> >

> >-- Original

> >message -----

> >

> >To: <NF2_Crewonelist>

> >Sent: January 31, 2000 7:16 PM

> >Subject: Re: Re: 9th ,10th and 11th Cranial Nerve Tumor

> >

> >

> >> From: ffusca@... ( A. Fusca)

> >>

> >> Hi Sheryn,

> >>

> >> I'm still here... alive and sorta well. I've been behind on my mail. My

> >wife

> >> was working afternoons last week so I had to take care of the kids and

> >it's

> >> hard to get on the computer with them around.

> >>

> >> It guess you would like to make a plan for handling your tumors. I

think

> >it

> >> may be best to come to Toronto to see a couple of NS to give you an

> >opinion

> >> on what to do. I'm not sure why the Sask. NS has not referred you to

> >someone

> >> here yet. If the Toronto doctors can't handle your case, then go to

HEI.

> >The

> >> reason I say come to Toronto first is because your Sask health plan

should

> >> cover the costs for surgery in Ontario (assuming they can't do it in

Sask

> >> which appears to be the case). If you go to HEI first without checking

> >> elsewhere in Canada, you may have to foot the bill yourself. I've toyed

> >with

> >> the idea of going to HEI myself and picking up the bill which I'm sure

> >would

> >> be more than $US 20,000.

> >>

> >> If the Toronto doctors can't do it, then Sask health care plan should

pay

> >> for you to go to HEI. I am thinking of having GK on a tumor I have at

the

> >> moment. We don't have GK in Canada yet and the Ontario Health care plan

> >has

> >> funded me for $US18,350 to go to Pittsburgh (those are medical costs

> >only -

> >> they will not fund travel or other costs). The point I am trying to

make

> >is

> >> that if we don't have what you need in Canada, you should get funding

to

> >go

> >> elsewhere. I think if you were to see Dr. Tator he would tell you your

> >> options and if it's best to go to HEI. See Dr. Rowed so you can compare

> >notes.

> >>

> >> You can try writing a very polite letter to your MP and explain the

> >> situation. A letter from your MP to the Sask NS will get him moving!!

What

> >> you are trying to do is reasonable. Everyone has the right to demand a

> >> competent and experienced doctor. You even moreso because of the

> >complexity

> >> of your situation. Also contact the ANAC to explain your problem. They

> >have

> >> a 1-800 number. It's a shame Gray is not there anymore because

she

> >has

> >> a great way with these things. But maybe there is someone there who can

> >> help. Perhaps they will refer you to me because I am still the ANAC NF2

> >contact!

> >>

> >> I hope this helps! Let me know if you have any questions or other idea.

> >Take

> >> care for now,

> >>

> >>

> >>

> >> >

> >> >

> >> >Hello Misha,

> >> >

> >> >I thought this would be the best method to try to include the crew.

HEI

> >> >first called them Jugular Foreamen tumors in '97, area right next to

the

> >> >spinal cord near the bottom. The R one was 1 1/2 cm in 1989 and the L

was

> >1

> >> >cm. Now they are 4 1/2 cm and 4.2cm. I have been hounding this Sask NS

> >since

> >> >'89 about them. The words jugular and caritod in the same sentence

could

> >not

> >> >be good in my mind. At first he constantly denied they were there. I

> >would

> >> >point out where on the written MRI, he would change the subject. Then

he

> >> >told me they do many of them on babies. I thought slow growing on

babies,

> >> >not likely, but if on babies, why not me. Last year I had a 2 month

wait

> >> >till appointment and made an appointment in AB for as close to the

same

> >time

> >> >as possible. He is the Sask Head of NS and said its got lots of room

to

> >> >grow, Dr. Oldring said You should not remove it now till you

absolutely

> >> >can't stand it and the pain. VERY RISKY TO REMOVE. I will eventually

have

> >a

> >> >Very Difficult time swallowing, talking, likely pnemonia (fluid on

> >> >lungs),and on and on. To remove it would cause an intterruption in

blood

> >> >flow causing permanent paralysis to my whole right side or death.The

year

> >> >before I had asked Dr. Hitzelberger and Dr. Brackmann about it and

they

> >said

> >> >they had done them and it would take 2 hours and there was a good

> >> >possibility I would loose my voice. After months of this NS screwing

up

> >> >referrals to Ont. and LA I sit with a November scan showing slight but

> >> >continued growth on both. Sask NS isn't positive the L one is a

foramen.

> >I

> >> >am told that GR is not a possibility because they radiated my AN's

with

> >none

> >> >focused radiation in '89 so they gave the 2 and a Brainstem Glioma

strong

> >> >radiation treatments at the same time. and the areas can't have more

> >> >radiation of any type. This is why I say we have 2 tier health already

> >for

> >> >we Manitoba and the Atlantis Provinces and Territories donb't offer

the

> >same

> >> >care or expertise as the Big 4. Population equals quality. I,m sure

> >Montana

> >> >doesn't offer what HEI does. I understand the areas having the most

> >people

> >> >need the most to help and have the most money, but for serious

problems

> >we

> >> >shouldn't have to beg to be sent where there is help. Dr. Oldring sent

me

> >to

> >> >HEI, not Sask NS. He also told me to leave my AN's till very large.

You

> >know

> >> >what. Writing this out has really helped me to see this clearly. The

> >problem

> >> >is the Sask. NS.

> >> >Now what to do? Any suggestions? , are you there? Do you think I

> >should

> >> >push to go to HEI again? This worry really wipes me out and my

thinking

> >gets

> >> >confused. sigh..... Oh this is long. Sorry everyone.

> >> >

> >> >Sheryn

> >> >

> >> >

> >> >

> >> >

> >> > Re: 9th and 10th Cranial Nerve Tumor

> >> >

> >> >

> >> >> Hi Sheryn,

> >> >> I was told about my jugular tumors right after I was diagnosed

> >about 3

> >> >> years ago. The said I had three or four but that they were " teeny

> >tiny " .

> >> >The

> >> >> ENT saw them on the MRI that diagnosed me. He said that they were so

> >small

> >> >> that when I wanted to I could just have out patient surgery in his

> >office.

> >> >I

> >> >> also have a lot of problems swallowing. Things like bread or

anything

> >dry,

> >> >> always feels stuck. I was told this was from AN surgeries I had, but

> >> >wouldn't

> >> >> surprise me if it was the tumors. I've never heard of them being

called

> >> >> " foremans " what's the difference? 4 cm sounds rather large, has

anyone

> >> >told

> >> >> you to get those out?? I think one of the crewbies told us a long

time

> >ago

> >> >> his vocal cords were permanently paralyzed bc the DR's advised him

to

> >wait

> >> >on

> >> >> the jugular tumors and they ended up waiting to long. Now he's got

an

> >> >> extremely raspy voice. You may want to ask the crew since I don't

have

> >> >much

> >> >> experience with this besides having them. I hope you can find some

> >answers

> >> >> you're looking for! Let me know when you decide what you will do,

I'd

> >be

> >> >> curious and I need to figure out my options too.

> >> >> Thanks and I hope you're having a good day!

> >> >>

> >> >

> >> >

> >> >See what's happening for NF2Con 2000!

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

> >> >

> >> >

> >> >

> >>

> >>

> >> See what's happening for NF2Con 2000!

> >> http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

> >>

> >

> >

> >See what's happening for NF2Con 2000!

> >http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

> >

> >

> >

>

>

> See what's happening for NF2Con 2000!

> http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

[Guest guest]

Hi Sheryn,

Yes, the kids are pretty wonderful. Brittania just started at her daycare

today. I recall when Francesco started I missed having him on shopping trips

despite all the crying and trouble he generally caused. Brittania was much

the same way. She never cried but never kept still in her seat. I have to go

out and get a few things later today so I'll see how much I miss Brittania.

Dr. Nedzelski works on a team with Dr. Rowed for AN operations. He is NOT a

NS but an inner ear specialist. He is a great doctor but would not be able

to help you. To be honest, I don't fully understand the technical details of

your problems because they are very complex. Dr. Tator is head of

Neurosugery at the Toronto Hospital. I saw him on TV once talking about neck

injuires in minor hockey so he is knowledgeable in a lot of areas. I still

feel he is the best person for you to talk to. I think he is close to

retirement so he has lot of experience. I doubt he operates anymore (you may

be thinking he is over the hill but this would be totally false!). I think

he would give you his assessment and refer you to another doctor at the

hospital if he felt someone else is more capable to help you. I do not know

Drs. Genitili, Guha or Wallace. However, I know they are at the Toronto

Hospital because they are listed on Dr. Tator's stationary. In all, there

are 10 NSs at the Toronto Hospital. I hope this helps!! Take care,

>

>

>Hi and everyone,

> It sounds like you have a beautiful family .

>I had my appointment with my NS on wednesday. This wouldn't have the affect

>on me that it does if I hadn't been riding him for 2 1/2 years when these

>tumors hit 2 cm in size. Anyway, now he says the R jugular/caroitid ( 4.2

>cm)is deep and pressing on the carotid and the R neuroma (4.4 cm) is closer

>to the surface but over the 4.2, which he is not sure what it is but not

>foreman or glomus. the one deep on the left is a jugular glomus and 3.5 cm

>and the tumor at the c1,c2 is .2 cm........ These and the Brainstem Glioma

>are the main concerns at this time and the neuroma must be removed to get to

>the 4.2 carotid tumor on the R. Both must go in the same surgery, for the

>4.2 is blocking the oropharyngeal airway, I have trouble speaking, voice,

>and am chasing solids with fluids for they stick in the back of my throat.

>This airway has been blocked since '96 MRI. He said Dr. Tator, Nedzelski,

>and Rowed are cranial, which we all knew, and not alot of help for this,

>best to have vascular. I would have thought possibly both. Dr. Gentilli was

>apparently just here and I have a feeling this is the reason for his sudden

>concern and attention to these. Has anyone that you or anyone seen, been to

>Dr. Wallace or Dr. Guha. Have you been to them? What of Dr. Gentilli?

>He wasn't sure they would want to do this and his pager went off and he left

>before I got to ask what he meant. The growth has averaged .2 - .3 cm on

>each of them last year, so no major panic as they are this large now I would

>think, but he didn't do an extra set of MRI's so when he sends these to Ont.

>as he plans, I don't have a set to take to HEI. This dr. took over 7 months

>and I am not counting the 3 summer months, of my time now . I started to

>chase him on this in May '99. as he hadn't filled my request for referral to

>Dr. Wallace in '98 like he said he would, on more than 1 occasion. He has

>always had excuses. I told him I want to talk to drs. in Ont. and take my

>MRI's as I do everywhere else ie. Edmonton, LA, Boston for research. He

>trained with the Ont. Drs. at Boston and knows these guys. I wonder if that

>is why he is ssssoooo against my going to ask them questions. I told him I

>have no intention of showing up and hopping directly onto an operating

>table. Those days are gone with the early 90's. Edmonton and HEI are so

>informative. I don't know what is with this guy, but my list is started for

>the College. Alot that will help my health though, for he is the only one

>that has even the slightest knowledge here. I went against his advice to

>have my AN removed, MY BEST MOVE!!! He is a good surgeon but lousy bedside

>manner. His arrogance is standing in the way of making him an even better

>dr. In Dec. he said it was risky, now says it shouldn't be, but waffles when

>quizzed. My hair would turn grey if it wasn't already! ....... Any

>suggestions , , anyone? I know it may be time to be happy with

>quantity as opposed to quality and that is why I was approaching the gov for

>HEI. I hoped for there support at least psycologically, but he requested the

>ABI, wrong, just an appointment for info.

>

>Sheryn, who sent us this COLD weather? east? west? you can take that back!

>Mmaaarrrnnnnniiiee??????

>

>

> ---- Original

>Message -----

>

>To: <NF2_Crewonelist>

>Sent: February 8, 2000 4:02 PM

>Subject: Re: Re: 9th ,10th and 11th Cranial Nerve Tumor

>

>

>> From: ffusca@... ( A. Fusca)

>>

>> Hi Sheryn,

>>

>> We have 2 kids - a boy (Francesco) who is 4 and a girl (Brittania) who is

>2.

>> They are both lots of fun but lots of work too and very adorable

>> (particularly when they are asleep!). We don't know if they have NF2. They

>> don't really have any signs of it but I guess I didn't either at their

>age.

>>

>> Looks like you covered a lot of angles on this. There is a lot of truth to

>> what V. was saying. Your best option may be to 'do nothing'. I take

>it

>> this is what the Sask NS is telling you. I would assume he knows something

>> (more than us anyway). It could be he just has no experience in this area.

>> On the other hand, it may not be a good idea to let HEI do it just because

>> they claim they can. I think even HEI would have to admit there are risks

>in

>> the operation. You are faced with quite a dilemma and I hope Dr. Tator or

>> whoever you decide to see in Ontario can shed more light on the situation.

>> Take care for now,

>>

>>

>>

>>

>> >

>> >

>> >Ah ,

>> >

>> >What can I say? You're a sweetheart. Thanks VERY much for the info. Its a

>> >great idea to go to both. Are appointments approximately 2 months? I am

>> >giving my NS one more chance to do the referrals. Feb. 9th. Its been 6

>wks

>> >and he is to read me my MRI's. I picked them up the first wk and

>duplicted

>> >the written and dropped everything off at his office. He insists he can

>ask

>> >any questions for me. i say my questions are many and depend on the

>answers

>> >I receive. I want to talk to them in person myself. I really cannot

>figure

>> >him out. Yes, the government will pay for the surgery if Ont. says best

>to

>> >go there or if their answer is similar to Edmonton. We never have travel

>> >paid for out of country or province either. I am surprised Alta. does out

>of

>> >Country. How many children do you have . How old are they?I hope

>none

>> >of them have this disease. I have seen your name in the Connection,

>> >and yes, I sure to miss Gray also. I have talked with ANAC and yes,

>> >they suggested you, Gray mentioned Dr. Tator. I have talked with my

>> >MP, My health ministers secretary, the college of Physicans and Surgeons,

>> >The Provinces Insurance Branch, my client representative. I'm thinking

>they

>> >don't believe that anyone can have this many tumors where I say and live.

>If

>> >I could show someone my MRI's I'd get some help. Really no one knows

>> >anything about this. I may have to fax everyone a copy. After the 9th

>I'll

>> >be on this full time for results. It is believed the foreamen may be

>making

>> >me deaf. The AN is only .6 cm. and should not be causing this significant

>a

>> >loss. It will be interesting to hear what they say in Toronto. Thanks

>alot

>> >. I feel so lucky to have all the crew. Everyone is so amazed I have

>> >such a rare disease and we have so much contact with others. We,re like

>one

>> >big close family. Seeing the crew in Vegas 2 years ago gave me the

>incentive

>> >to at least try e-mail although I thought I couldn,t do it. I'm getting

>> >better and enjoy it now. Even smile at some of my mistakes. My husband is

>> >getting pretty good at correcting my errors. I'm starting to

>wandddeeeerrrr

>> >aggggaaaiiinnn........... time to shut down. This is great finger

>dexterity!

>> >GOOD NIGHT ALL.

>> >

>> >Thanks !

>> >Sheryn

>> >

>> >

>> >-- Original

>> >message -----

>> >

>> >To: <NF2_Crewonelist>

>> >Sent: January 31, 2000 7:16 PM

>> >Subject: Re: Re: 9th ,10th and 11th Cranial Nerve Tumor

>> >

>> >

>> >> From: ffusca@... ( A. Fusca)

>> >>

>> >> Hi Sheryn,

>> >>

>> >> I'm still here... alive and sorta well. I've been behind on my mail. My

>> >wife

>> >> was working afternoons last week so I had to take care of the kids and

>> >it's

>> >> hard to get on the computer with them around.

>> >>

>> >> It guess you would like to make a plan for handling your tumors. I

>think

>> >it

>> >> may be best to come to Toronto to see a couple of NS to give you an

>> >opinion

>> >> on what to do. I'm not sure why the Sask. NS has not referred you to

>> >someone

>> >> here yet. If the Toronto doctors can't handle your case, then go to

>HEI.

>> >The

>> >> reason I say come to Toronto first is because your Sask health plan

>should

>> >> cover the costs for surgery in Ontario (assuming they can't do it in

>Sask

>> >> which appears to be the case). If you go to HEI first without checking

>> >> elsewhere in Canada, you may have to foot the bill yourself. I've toyed

>> >with

>> >> the idea of going to HEI myself and picking up the bill which I'm sure

>> >would

>> >> be more than $US 20,000.

>> >>

>> >> If the Toronto doctors can't do it, then Sask health care plan should

>pay

>> >> for you to go to HEI. I am thinking of having GK on a tumor I have at

>the

>> >> moment. We don't have GK in Canada yet and the Ontario Health care plan

>> >has

>> >> funded me for $US18,350 to go to Pittsburgh (those are medical costs

>> >only -

>> >> they will not fund travel or other costs). The point I am trying to

>make

>> >is

>> >> that if we don't have what you need in Canada, you should get funding

>to

>> >go

>> >> elsewhere. I think if you were to see Dr. Tator he would tell you your

>> >> options and if it's best to go to HEI. See Dr. Rowed so you can compare

>> >notes.

>> >>

>> >> You can try writing a very polite letter to your MP and explain the

>> >> situation. A letter from your MP to the Sask NS will get him moving!!

>What

>> >> you are trying to do is reasonable. Everyone has the right to demand a

>> >> competent and experienced doctor. You even moreso because of the

>> >complexity

>> >> of your situation. Also contact the ANAC to explain your problem. They

>> >have

>> >> a 1-800 number. It's a shame Gray is not there anymore because

>she

>> >has

>> >> a great way with these things. But maybe there is someone there who can

>> >> help. Perhaps they will refer you to me because I am still the ANAC NF2

>> >contact!

>> >>

>> >> I hope this helps! Let me know if you have any questions or other idea.

>> >Take

>> >> care for now,

>> >>

>> >>

>> >>

>> >> >

>> >> >

>> >> >Hello Misha,

>> >> >

>> >> >I thought this would be the best method to try to include the crew.

>HEI

>> >> >first called them Jugular Foreamen tumors in '97, area right next to

>the

>> >> >spinal cord near the bottom. The R one was 1 1/2 cm in 1989 and the L

>was

>> >1

>> >> >cm. Now they are 4 1/2 cm and 4.2cm. I have been hounding this Sask NS

>> >since

>> >> >'89 about them. The words jugular and caritod in the same sentence

>could

>> >not

>> >> >be good in my mind. At first he constantly denied they were there. I

>> >would

>> >> >point out where on the written MRI, he would change the subject. Then

>he

>> >> >told me they do many of them on babies. I thought slow growing on

>babies,

>> >> >not likely, but if on babies, why not me. Last year I had a 2 month

>wait

>> >> >till appointment and made an appointment in AB for as close to the

>same

>> >time

>> >> >as possible. He is the Sask Head of NS and said its got lots of room

>to

>> >> >grow, Dr. Oldring said You should not remove it now till you

>absolutely

>> >> >can't stand it and the pain. VERY RISKY TO REMOVE. I will eventually

>have

>> >a

>> >> >Very Difficult time swallowing, talking, likely pnemonia (fluid on

>> >> >lungs),and on and on. To remove it would cause an intterruption in

>blood

>> >> >flow causing permanent paralysis to my whole right side or death.The

>year

>> >> >before I had asked Dr. Hitzelberger and Dr. Brackmann about it and

>they

>> >said

>> >> >they had done them and it would take 2 hours and there was a good

>> >> >possibility I would loose my voice. After months of this NS screwing

>up

>> >> >referrals to Ont. and LA I sit with a November scan showing slight but

>> >> >continued growth on both. Sask NS isn't positive the L one is a

>foramen.

>> >I

>> >> >am told that GR is not a possibility because they radiated my AN's

>with

>> >none

>> >> >focused radiation in '89 so they gave the 2 and a Brainstem Glioma

>strong

>> >> >radiation treatments at the same time. and the areas can't have more

>> >> >radiation of any type. This is why I say we have 2 tier health already

>> >for

>> >> >we Manitoba and the Atlantis Provinces and Territories donb't offer

>the

>> >same

>> >> >care or expertise as the Big 4. Population equals quality. I,m sure

>> >Montana

>> >> >doesn't offer what HEI does. I understand the areas having the most

>> >people

>> >> >need the most to help and have the most money, but for serious

>problems

>> >we

>> >> >shouldn't have to beg to be sent where there is help. Dr. Oldring sent

>me

>> >to

>> >> >HEI, not Sask NS. He also told me to leave my AN's till very large.

>You

>> >know

>> >> >what. Writing this out has really helped me to see this clearly. The

>> >problem

>> >> >is the Sask. NS.

>> >> >Now what to do? Any suggestions? , are you there? Do you think I

>> >should

>> >> >push to go to HEI again? This worry really wipes me out and my

>thinking

>> >gets

>> >> >confused. sigh..... Oh this is long. Sorry everyone.

>> >> >

>> >> >Sheryn

>> >> >

>> >> >

>> >> >

>> >> >

>> >> > Re: 9th and 10th Cranial Nerve Tumor

>> >> >

>> >> >

>> >> >> Hi Sheryn,

>> >> >> I was told about my jugular tumors right after I was diagnosed

>> >about 3

>> >> >> years ago. The said I had three or four but that they were " teeny

>> >tiny " .

>> >> >The

>> >> >> ENT saw them on the MRI that diagnosed me. He said that they were so

>> >small

>> >> >> that when I wanted to I could just have out patient surgery in his

>> >office.

>> >> >I

>> >> >> also have a lot of problems swallowing. Things like bread or

>anything

>> >dry,

>> >> >> always feels stuck. I was told this was from AN surgeries I had, but

>> >> >wouldn't

>> >> >> surprise me if it was the tumors. I've never heard of them being

>called

>> >> >> " foremans " what's the difference? 4 cm sounds rather large, has

>anyone

>> >> >told

>> >> >> you to get those out?? I think one of the crewbies told us a long

>time

>> >ago

>> >> >> his vocal cords were permanently paralyzed bc the DR's advised him

>to

>> >wait

>> >> >on

>> >> >> the jugular tumors and they ended up waiting to long. Now he's got

>an

>> >> >> extremely raspy voice. You may want to ask the crew since I don't

>have

>> >> >much

>> >> >> experience with this besides having them. I hope you can find some

>> >answers

>> >> >> you're looking for! Let me know when you decide what you will do,

>I'd

>> >be

>> >> >> curious and I need to figure out my options too.

>> >> >> Thanks and I hope you're having a good day!

>> >> >>

>> >> >

>> >> >

>> >> >See what's happening for NF2Con 2000!

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

>> >> >

>> >> >

>> >> >

>> >>

>> >>

>> >> See what's happening for NF2Con 2000!

>> >> http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>> >>

>> >

>> >

>> >See what's happening for NF2Con 2000!

>> >http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>> >

>> >

>> >

>>

>>

>> See what's happening for NF2Con 2000!

>> http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>>

>

>

>See what's happening for NF2Con 2000!

>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

>

>