Re: New Member Peeples

[Guest guest]

- I was just reading your message. My ABI does not have a magnet in

it. It was placed in Nov. 1996. I have had annual MRI's since then. I

haven't stuck to the top of the machine! Of course there is not much space

in there so I wouldn't have far to go if I did. Forgive my sense of humor.

I had to be sent to another clinic first before I was able to take my first

MRI after the implant placement. I wanted to be reassured I didn't have a

magnet in my head and so did the MRI technicians. I was under the impression

I did have a magnet in the preliminary conferences about deciding for this

type of surgery. We get mixed messages as you know.

I am sorry your insurance won't cover a removal. I was told removing it

is more dangerous than placing it though. My doctors would not be in favor

of removing mine unless it caused serious problems for me. That is terrible

what your insurance told you. Would only cover it if infected! I think

these insurance companies would be more understanding if they lived our lives

for one year.

In His Name,

Jane

[Guest guest]

Thank you for the invitation to join your club because

I need the support.

It's not possible for me to have an MRI because

of the magnetic field. The latest Cochlear Implants

do not have this limitation because they are able

to remove the magnet, but with the older system

which I have implanted, the metal in the implant

creates a magnet field with an MRI.

I would like to have this entire implant removed

because I believe that it has made my situation

worse; however, Cochlear will not have it removed

and my insurance or so I'm told, will not remove

it until or unless it becomes infected; which of

course, I don't want or need!

[Guest guest]

Hello Jane,

If they lived our lives for one year? Mmmmmmmhhhh,

do you mind if I include a few doctors on this list too?

hehehehe

I'm not sure when they stopped putting magnets in

the implants; however, the damage to someone within

a magnet field would be more serious than just

being stuck to the ceiling.*G Something like

a scrambled brain?

Regarding MRIs, they have open MRIs which aren't

enclosed like the older models.

PS: Do you mind telling me if you're deaf? I don't

mean to sound rude, but I would like to know how

many have been damaged to the point of loosing their

hearing to the point of being profound. After the

implant destroyed all of the residual hearing in

my left ear, I only had 95db loose in my right hear

which is considered profound.

[Guest guest]

-

No, I don't mind you asking any questions. I am 100% deaf.

I was totally deafened in my right ear in 1974 during my 3rd brain surgery.

At that time the docs didn't know what was causing the regrowth of my tumor

on my sight nerve. The surgery to remove the regrowth and remove another

tumor found in the back of head (right side) paralized the whole right side

of my face because the docs entered the back of my head through my facial

nerves. Hence, I went into the surgery expecting to come out " whole " like I

did the first surgery. The 2nd surgery was one week before the 3rd was

fruitless meaning they couldn't reach the tumor. Doing post op xrays of 2nd

surgery they to determine a new route to tumor they found the 2nd tumor in

back. Confusing isn't it? Anyway, it was quite a shock waking up from the

3rd surgery.

My last surgery I had I was down to only hearing sounds in my left ear.

So that is why I opted to try the ABI. My life has been less stressful

being totally deaf. Just hearing sounds was driving me crazy. People knew

me as a hearing person. They couldn't believe I was going deaf. Still kept

speaking to me as if I could hear good and not writing things down for me.

Thanks for the information about the MRI concerning the magnet. I didn't

know what really happened. I thought it just messed up the machine. I

didn't know it would damage our brain permanently. We have an open MRI here

in my city. I think two of them. I have never had an open MRI but I would

surely welcome it. The hospital whose care I am under is 1-1/2 hours away.

They do not have any open MRI's yet. I asked my local doctor if she could

oversee me having the MRI's locally to save time and traval and use the open

MRI. She said " no " it is better for an NF2 patient to stay in the same

hospital with their NF2 doctors. My daughter is under the care of the same

hospital for her checkups and MRI's. We will just stick together! I also

reacted to the Galodium (sp?) last time too. So they need me to come up a

day before to administer Prednisone. I am familiar with that because I

have had a severe asthma attack. Plus I had spinal injections of it for a

herniated disc which was later removed. I am a real picture of health here!

Jane

[Guest guest]

Welcome to our Crew. I've printed off your bio to enable me to re-read and take it all in.

What a long hard road it's been for you. I hope you find the companionship and knowledge that will help you.

So I say again Welcome. I certainly hope our Crew can help you, especially with your medicos.

I'll be interested to read the replies to both you and new member Jeff D.

Regards,

From Australia on a cool Autumn day,

ine.

New Member Peeples

Wow take a look at 's bio and see if you can help.

[Guest guest]

Thank you, ine.

[Guest guest]

Jane,

> I also

> reacted to the Galodium (sp?) last time too. So they need me to come up

a

> day before to administer Prednisone. I am familiar with that because I

> have had a severe asthma attack. Plus I had spinal injections of it

for

> a

> herniated disc which was later removed.

Is Galodium the dye they put in your veins? If so, I'm

allergic to it as well. I've had two back surgeries

too, and I continue to have problems with my back.

Working out at the Y helps me to a degree, but I've gained

too much weight for my small frame, and I'm trying to

loose it now, but I like to cook and to eat too much!!

I do know that I have less problems when I weigh about

25 pounds less than I weigh right now.

R

[Guest guest]

.. We have an open MRI here in my city. I think two of them. I have never had an open MRI but I would surely welcome it. The hospital whose care I am under is 1-1/2 hours away.

They do not have any open MRI's yet. I asked my local doctor if she could oversee me having the MRI's locally to save time and traval and use the open MRI. She said "no" it is better for an NF2 patient to stay in the same hospital with their NF2 doctors.

Hi Jane,

I'm very surprised at the doctor's comments regarding the open MRI for you.

I go, once a year, to Massachusetts General Hospital to see Dr. MacCollin and several other doctors for a follow up. Before that visit, I have an open MRI done locally (where I live). THIS IS AUTHORIZED BY DR. MACCOLLIN and someone from her staff calls my MRI place to authorize it. Mass General is about 2 to 2 1/2 hours from where I live. It is a heck of a lot easier for me to have the MRI done where I live. They develop the films and give them to me.

I bring them with me to my appointments at Mass General. I just drop them off with Dr. MacCollin before my other appointments so that she has time to analyze them. It's worked out fine.

Ask your doctor about it. Just make sure you have the phone number for the MRI place handy. And go through your main doctor. The local one doesn't necessarily know the whole picture.

Hmmm...actually, she even authorized my previous MRIs. These were done at a local hospital, as well. The reason why I changed is because I now go to an "open" MRI place. The old ones started freaking me out. I think I've had roughly 25 or so "MRI visits" so far. And I had them when in the hospital for my surgeries too. Gosh...I could start a library. )

June

[Guest guest]

Dear June,

Thank you for that information. I was hoping someone on the crew could

help me with this.

I will write my " main " doctor at UIHC (University of Iowa Hospital and

Clinics - in Iowa City, Iowa) Dr. Bruce Gantz (OTO). I will also send a

copy to my daughter's main doctor who is in Genetics. I see them both once

a year. Heidi and starting this year my granddaughter Jasmine (10 years of

age) see the Genetics doctor annually. We all go together on that one.

Jasmine is too young for an MRI yet that is what they told us (I know Louis

and Katrina and all the other kids younger have them) but she starts to get

the NF2 physical every year until we can rule out Heidi has it. Heidi has

no symptoms thus far.

The open MRI in my city, one is right across the street from our Court

House where I spend a lot of my time for my job. So close for me.

I don't see the big deal keeping it in the same city. A xray is a xray

no matter where you get it done. It would save me in a lot of ways to have

the MRI done in town. I would also try to get Heidi's MRI done here. I

think with an open MRI she would not have to be sedated!

God bless.

Jane

[Guest guest]

Hi Pete - Thanks for you input. I didn't know the machines differed. Hmmm!

I like your quote about not hearing the jerks!

God bless,

Jane

[Guest guest]

<<an xray is an xray>

Actually.. there is a slight differences in the machines that for a continuing

study (like every so many months) They prefer to have you get it done on the

same machine.

Still not enough to warrant making you travel but you shouldn't go.. This time

I'll get it done here, next time I'll get it done there, the time after that

someplace else

Pete

--

Brayman ICQ # 66709621

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

[Guest guest]

In a message dated 5/20/01 8:14:54 PM Pacific Daylight Time,

rosemarylee@... writes:

<< ok, what is the difference between an open mri and a closed

one?????rosemary. >>

Hi,

The differnce is NOT getting clostraphobia in an open one

Lana

[Guest guest]

Oh !! Your story is so sad and makes me so very angry. Doctors like your primary physician should have their licenses removed!! OHHHHHHH, how dare he??!!

A great big WELCOME to you. You will always find support here (whether or not you have this horrid disease!).

God Bless You,

Rhonda

Texas

[Guest guest]

ok, what is the difference between an open mri and a closed

one?????rosemary.

on 21/5/01 3:13 PM, bknor at bknor@... wrote:

> Jane,

> Nick's first MRI of his brain was done at a hospital with an open MRI when

> he was six. We didn't know he had NF2 then and they didn't enhance

> (gadolinium) the MRI. Nick's neuro. we were referred to after they found

> his neck tumor is at a different hospital and said it wasn't a very good MRI

> and we are lucky they caught the tumor in his neck. They did miss one in

> the brain since it wasn't enhanced. Anyhow, we did get to sit in the room

> with him and hold his hand. Now he gets all his MRIs done at the hospital

> where his neurosurgeon is and has to be sedated. He doesn't like it, but he

> makes it through. My point is just make sure the place with the open MRI is

> a good and reputable place and they take good MRIs.

>

>

> Jane said:

> It would save me in a lot of ways to have

>> the MRI done in town. I would also try to get Heidi's MRI done here. I

>> think with an open MRI she would not have to be sedated!

>> God bless.

>> Jane

>>

>>

>>

>>

[Guest guest]

Jane,

Nick's first MRI of his brain was done at a hospital with an open MRI when

he was six. We didn't know he had NF2 then and they didn't enhance

(gadolinium) the MRI. Nick's neuro. we were referred to after they found

his neck tumor is at a different hospital and said it wasn't a very good MRI

and we are lucky they caught the tumor in his neck. They did miss one in

the brain since it wasn't enhanced. Anyhow, we did get to sit in the room

with him and hold his hand. Now he gets all his MRIs done at the hospital

where his neurosurgeon is and has to be sedated. He doesn't like it, but he

makes it through. My point is just make sure the place with the open MRI is

a good and reputable place and they take good MRIs.

Jane said:

It would save me in a lot of ways to have

> the MRI done in town. I would also try to get Heidi's MRI done here. I

> think with an open MRI she would not have to be sedated!

> God bless.

> Jane

>

>

>

>

[Guest guest]

> Jimmy is good. In the days of yore we were enclosed in a tube, now, at least

here in FL, we are no longer wrapped like a sausage link but rather lay on a

table with a star trek looking device over us that takes the mri. I miss the

tube actually, hard to sleep with all the light around you :-)

> ----- Original Message -----

> From: Rosemary Lee

>

> ok, what is the difference between an open mri and a closed

> one?????rosemary.

> ________________________________________________________

> hmmmmmmm,glad you asked........if I had to venture ,my educated guess

wou> ld be...........an open mri is.........open,where as a closed mri

is.......> ...closed.

> always happy to help ,Jimmy

>

>

>

[Guest guest]

I also heard an open MRI can be less detailed. What I heard at the time was the

smaller the tube, the more detailed the machine's results. I don't know if it's

true, but my NS won't let me do an open MRI

Pete

On Sun, May 20, 2001 at 11:20:01PM -0400, Kizzycom@... wrote:

> In a message dated 5/20/01 8:14:54 PM Pacific Daylight Time,

> rosemarylee@... writes:

>

> << ok, what is the difference between an open mri and a closed

> one?????rosemary. >>

> Hi,

>

> The differnce is NOT getting clostraphobia in an open one

>

> Lana

>

>

>

>

[Guest guest]

You mean they have mri's that aren't tubes. The ones we have here are like

tunnels. How would an open one work, considering the magnet is going around

the diameter????Or do you mean they just have bigger/wider tunnels? How wide

are these open mris then?

on 21/5/01 9:34 PM, Pete Brayman at PeteEMT@... wrote:

> I also heard an open MRI can be less detailed. What I heard at the time was

> the smaller the tube, the more detailed the machine's results. I don't know if

> it's true, but my NS won't let me do an open MRI

>

> Pete

>

> On Sun, May 20, 2001 at 11:20:01PM -0400, Kizzycom@... wrote:

>> In a message dated 5/20/01 8:14:54 PM Pacific Daylight Time,

>> rosemarylee@... writes:

>>

>> << ok, what is the difference between an open mri and a closed

>> one?????rosemary. >>

>> Hi,

>>

>> The differnce is NOT getting clostraphobia in an open one

>>

>> Lana

>>

>>

>>

>>

[Guest guest]

----- Original Message -----

From: Rosemary Lee

ok, what is the difference between an open mri and a closedone?????rosemary.

________________________________________________________

hmmmmmmm,glad you asked........if I had to venture ,my educated guess would be...........an open mri is.........open,where as a closed mri is.........closed.

always happy to help ,Jimmy

[Guest guest]

I've heard the same thing - the open MRI's aren't as clear as the closed units.

Dianne

[Guest guest]

Jimmy - you are so smart! and funny!

An open MRI looks like a donut hole (similary to CAT scan machine).

Other people can sit in the room and chat with you! I have not had one but

have seen the machine!

Jane

[Guest guest]

!

An open MRI looks like a donut hole (similary to CAT scan machine).

Other people can sit in the room and chat with you! I have not had one but have seen the machine!

Jane

Jane,

The open MRI that I had looked more like the star

trek ship and they wouldn't let anyone stay in there

with me, and chatting was definitely out......they don't

want you moving. It's like two slabs of concrete put

together to look like a sandwich. You lay on a table

that slides in between the slabs like a piece of bologna!

In my opinion, it's as bad as a closed MRI (I am very

claustrophobic)!

Love & Prayers,

[Guest guest]

Hmmm! I believe you but I have had friends in Iowa that have had open

MRI's. One guy's wife sat in the room with him. I think it was done in Des

Moines, Iowa.

And the new open MRI advertised here in Burlington they have the picture

in the paper. Advertise that you can have someone in the room with you.

Jane

[Guest guest]

Hmmm! I believe you but I have had friends in Iowa that have had open MRI's. One guy's wife sat in the room with him. I think it was done in Des Moines, Iowa.

And the new open MRI advertised here in Burlington they have the picture in the paper. Advertise that you can have someone in the room with you.

Jane

Jane,

Thanks for the info, I'll have to check into that the

next time I have to go in there. I don't know if it

will help me any having someone there, but it's

worth a try! Open or closed, I am absolutely

terrified!

Love & Prayers,

[Guest guest]

On Mon, May 21, 2001 at 11:50:45PM -0400, JDWpoetgirl@... wrote:

> Hmmm! I believe you but I have had friends in Iowa that have had open

> MRI's. One guy's wife sat in the room with him. I think it was done in Des

> Moines, Iowa.

> And the new open MRI advertised here in Burlington they have the picture

> in the paper. Advertise that you can have someone in the room with you.

> Jane

>

>

>

>