Author Topic: Worried while "waiting"...  (Read 8800 times)

anothereveryman

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Re: Worried while "waiting"...
« Reply #15 on: April 26, 2013, 05:02:50 am »
I am having a hearing for my disability case with the local court system very soon. The half-deafness I am suffering is only a small part of it, but it is still a part all the same.

I'm hoping with great anxiety that the case can be won, because it would make a lot of my worries and troubles regarding this AN much easier to manage in the future.

The tinnitus still comes and goes, and seems to have a mind of its own... sometimes with pulsing sensations that are indescribable to someone who hasn't had them, and that is very frightening.

pjb

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Re: Worried while "waiting"...
« Reply #16 on: April 26, 2013, 06:48:22 am »
Your schwannoma is very very small.
6mm x 2mm x 2mm is smaller than a grain of rice.
The other thing is, as it is a Intracochlear Schwannoma its on the outside of the skull.

To get to the brainstem the tumour needs to grow through the tiny internal auditory canal which is about 5mm wide x 10mm long. and then expand another 30mm, about the size of a golf ball before it starts to become a real problem. Rarely some people have had tennis ball size AN's with no symptoms.

I think there is a far greater chance it will grow outside of the skull where there is more room, rather than navigate its way inwards.

I can imagine as it is on the cochlear its creating problems, removal may bring its own set of new issues.

I guess you have been recommended W&W because the risks of removing a thing the size of a grain of rice may not justify the risks of surgery, or the potential outcomes.

Your information is very helpful, even comforting to me. I didn't realize the proportions involved... but Dr. Slattery did say some people do need to have this sort of tumor removed eventually. He didn't specify why. I take it it's if it does precisely what you said it sometimes but rarely does and grows the other way?

I get very loud tinnitus, throbbing sensations, and I am completely deaf in that affected ear. Every time the ringing hits a high point (or changes to a stranger sound like metal-grinding or electrical pulses) I get scared and wonder why the sudden fluctuation. A dying cochlea, I am lead to assume...

What "issues" could happen from removing something from a dead organelle like the cochlea that's not even doing anything anymore?

Again, thank you for your input.

Sometimes because it is small doesn't mean that it cannot cause many problems hoping it all works out for you and definitely see if the hospitals will help with any assistance for you they do have some programs that are funded for those in need.

Good luck,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

anothereveryman

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Re: Worried while "waiting"...
« Reply #17 on: May 06, 2013, 02:34:17 am »
I'm terrified, for a strange new reason.

I have apparently had a favorable outcome at my disability hearing (started for unrelated reasons to the cochlear schwannoma/hearing loss, but the schwannoma/hearing loss certainly helped the case). In a few months I'm likely to be officially on disability. But until then I don't have access to Medicare or the like.

And the ringing seems to be more frequent, louder, and I get sensations of fullness and strain on that side of my face nearly constantly. How can something the size of a grain of rice wreak so much havok? In my frightened state it's not hard to imagine that the tumor might be getting bigger, and at present I have to wait for Medicare approval and coverage to get another MRI. It's been roughly a year and I feel the symptoms have gotten worse.

I know there's charity programs out there, but its so exhausting and out of my reach (I've tried to some extent, but so much seemed to depend on Medicare access when I made inquiries locally) that I'm in a very stressful wait-and-see period.

I guess I just need assurance. Or hope. Or something I don't even know yet.

anothereveryman

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Re: Worried while "waiting"...
« Reply #18 on: May 17, 2013, 03:14:46 am »
Still waiting for the final official decision from the court.

Even if the lawyer said it went well, until I see it in writing I can't feel relief. If I do get disability (unrelated to my hearing loss), I may be able to get this thing out after all. Someday.

 


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