CIs

[Guest guest]

Well from what I've learned, NF2 ppl usually just are NOT candidates for the Cochlear Implant. Probably because just about all of us have or will have useless nerves- It's not going to work! So... we go the ABI route, it's taylor made for the bad nerve folks right? Have any of you had ABIs that worked for a while then stopped later? I always thought with the ABI, it either worked or didn't, right away. Maybe the reason yours doesn't work , is bc you were not properly diagnosed with NF2 before they started trying to fix your hearing. I still don't understand how you plan to ever be diagnosed if you absolutely cannot have an MRI. It's a must do thing for any NF2 patient. Some of us need them several times a year, we all need them yearly at least. Maybe you should get some GOOD drs names in your area, drs who've seen NF2. If you have a knowledgeable dr, I think they'll diagnose you right away or at least come to the conclusion that you need an MRI therefore the useless metal needs to come out. I don't think any insurance company would fuss about taking it out when they learn you've possibly got a disorder that causes multiple tumors throughout your body. It will cost them much more later if you do have NF2. We can't live or be treated without MRIs. Many of the things you've mentioned your drs scoff about (dropfoot etc) are things good experienced NF2 drs expect and diagnose in us right away! (Ok maybe not right away.)

LynnBK, what's the deal with your CI? Do you have metal in your head? Yours is an older one too so what's up with that?

Carla (cataracts in both eyes, lazy eye/scar tissue/blind in left eye, beginner left side foot drop, not nearly bad enough for a brace/no sense of smell (oh that's a new one huh?)

[Guest guest]

> Hi , welcome! You said you were implanted with a CI in 82,

No, I've been disabled on SSD since 1982, but I've

only had the CI since 1992.

[Guest guest]

> If you remove the magnet, can I have MRI's? " Well, to my surprise, " Yes. "

I'm stunned, Jeanette, because I've begged them to

remove it, but the answer is NO! They will only remove

it if it gets infected! I'm so frustrated.

[Guest guest]

Jeanette,

So, all they need to do is remove the magnet under

my scalp? I'll give this a go and see what happens

because I need to have an MRI.

Thank you so much for this information because I've

been trying unsuccessfully to get them to remove the

IC. I hated the IC, and I'm one of those to this point

at least who prefers silence. All of the noise that came

through the IC almost drove me batty.

R

[Guest guest]

Carla,

> , is bc you were not properly diagnosed with NF2 before they started

> trying to fix your hearing. I still don't understand how you plan to ever

> be

> diagnosed if you absolutely cannot have an MRI.

Jenette told me what I should have figured out for

myself that all I need to do is have the magnet removed,

and after this, I can have an MRI. I've spoken with

the Staff of the a genetic doctor at the University of

South Alabama, and they are trying to help me right now.

I'm going to talk with my Neurologist when I see him

again on the 5th of June, and I'll also speak with my

ENT when I have my regular appointment with him around the 1st of July;

however, I may make an appointment in a couple of weeks.

I've had a number of MRIs for various problems; however,

I've never had one on my brain. The last time I had

any test on my brain was a series of Cat Scans in the

60s....oh, and the test the neurosurgeon does when he

drains all of the fluid off of the spine and puts in dye while

he turns the body in every possible direction. All of this

was done in the late 60s...I think? No, it was 1971 to

be exact.

R

[Guest guest]

Carla,

The only NF2 doctor in Mobile, or rather, in Alabama

is located at a University only about ten miles from

where I live, and I'm in contact with his staff. They're

trying to help me.

R

[Guest guest]

Hi , welcome! You said you were implanted with a CI in 82, and you have a magnet? I was one of the first few to get the ABI back in 85 (It was called a CEP back then ... something Electronic Prosthesis), and I think I know the magnet you're talking about. Is it that one to hold the coil? My ABI stopped functioning after a year, and for many years I had only CAT scans bc of the magnetic field. The mri was a new gizmo anyway. Eventually I asked the drs at HEI, "If you remove the magnet, can I have MRI's?" Well, to my surprise, "Yes." I did not understand why THEY never mentioned this to me to begin with?! Anyway, if this is the same magnet your talking about, it's just a day surgery. The rest of the "hardware" scares the mri tech maybe, but I've had mri's for a decade since without any problem. That old "antique" has been in my head ever since. Steve, you were one of us "Bill House era"' CEP'ers, right? Is your magnet still in place?

Jennette

[Guest guest]

But are you sure you are asking " just remove the magnet " and not " remove the

ABI " ? If they still say no, get the info from Jen about how and where hers was

removed; contact that doc and get verification and go to him and have it done!!

Marie

rskiffy@... wrote:

> > If you remove the magnet, can I have MRI's? " Well, to my surprise, " Yes. "

> I'm stunned, Jeanette, because I've begged them to

> remove it, but the answer is NO! They will only remove

> it if it gets infected! I'm so frustrated.

>

>

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