?? pulsatile tinnitus, severe hearing loss & glomus tumor??

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Pam - 12 Jul 2006 01:02 GMT

I am a newbie here. (43 y/o female) I have recently been diagnosed
with severe hearing loss in my right ear, and pulsatile tinnitus. I
have had the p.t. for many years now, but the hearing loss is very new.
My ent suspects i have something called a GLOMUS TUMOR. He has
scheduled me for a ct scan and a mri over the next two months. I am
scared by the information i have found so far. Has anyone dealt with
similar symptoms?

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Susan - 12 Jul 2006 01:07 GMT

> I am a newbie here. (43 y/o female) I have recently been diagnosed
> with severe hearing loss in my right ear, and pulsatile tinnitus. I
[quoted text clipped - 3 lines]
> scared by the information i have found so far. Has anyone dealt with
> similar symptoms?

Hi, Pam,

I haven't, and I don't know if anyone else here at present has (though
I'm sure they'll speak up if they are), but I wanted to welcome you.

Guess all you can do is gather information, do a lot of research, get
the tests and see what your options are.

I know it's scary. Maybe having a better handle on what it is and what
you can do will help. I took a look on google, and it appears that
these tumors can be painful, but are typically benign.

Susan

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Pam - 12 Jul 2006 23:31 GMT

Hi Susan,

Thanks for the welcome. I'm not actually in any pain at the moment,
but its the treatment options that have me freaking.. It seems that i
have a choice of surgery or radiation, both of which can cause a
complete hearing loss on the affected side. Plus surgery has a risk of
death and many other problems. I am alone in this right now, as my
only family is not speaking to me at this time, and my husband has
mental problems and is incapable of supporting me emotionally. I was
hoping to hear from someone that had faced this type of situation who
could tell me what choice they made.

Keep your fingers crossed for me, if you would.

thanks. pam

> x-no-archive: yes
>
[quoted text clipped - 19 lines]
>
> Susan

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Susan - 13 Jul 2006 00:03 GMT

> Hi Susan,
>
[quoted text clipped - 7 lines]
> hoping to hear from someone that had faced this type of situation who
> could tell me what choice they made.

Pam, maybe his suspicion won't pan out, and you won't have to make that
decision. How did you discern those two choices, what resources did you
investigate? Is it possible that there are other, innovative choices?

Why two months time to get your imaging tests done, that seems a long
time to wait and worry?

It must be very hard to carry this around with you and not have the
support of those close to you.

> Keep your fingers crossed for me, if you would.

Of course I will.

Susan

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Pam - 16 Jul 2006 19:32 GMT

HI Susan,

Here is a link to the group i got my main info from...

http://www.american-hearing.org/name/glomus_tumor.html

Its the American Hearing Research Foundation. While pulsatile tinnitus
is not normally problematic, when you also have a loss of hearing it
usually indicates something more serious. Even my gen med dr agrees
that it is unusual for someone my age to have as much of a loss as i do
(6 degrees or levels of loss in high frequency sounds on the right ear
alone).The part that has me so frightened is the possible location of
the tumor. Anything having to do with the flow of blood to the brain
is scary, ya know? I do have a family history of assorted cancers.

As for the length of time i am having to wait for the imaging tests, I
have to deal with the Houston VA hospital. Thats the medical coverage
i have, and they are very slow. I just had the CT on Friday, and hope
to get the results soon. The MRI is not until the end of August,
unfortunately. Its so very frustrating having to wait and wonder like
this, but at least the tests are all free. Cant complain too much i
guess.

If anyone is interested, I make handmade Awareness Ribbons, and have
one that is specifically for Tinnitus. Email me and i can send you the
info.

Thanks to anyone who may be able to shed any more light on this
situation for me.

Pam

> x-no-archive: yes
>
[quoted text clipped - 25 lines]
>
> Susan

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Susan - 16 Jul 2006 19:47 GMT

> HI Susan,
>
[quoted text clipped - 10 lines]
> the tumor. Anything having to do with the flow of blood to the brain
> is scary, ya know? I do have a family history of assorted cancers.

Yeah, it sounds as if both radiation and surgery have serious risks. I
would encourage you to find out who does the most frequent surgeries of
this type, then get his/her individual statistics. Studies have shown
that it's how often a surgeon does a particular procedure that is
typically the best predictor of success. If the best surgeon isn't in
your VA coverage, I'd fight for an out of network benefit, considering
how tricky this is and how important the quality is. You want the
single most expert surgeon you can find, if it comes to that.

> As for the length of time i am having to wait for the imaging tests, I
> have to deal with the Houston VA hospital. Thats the medical coverage
[quoted text clipped - 3 lines]
> this, but at least the tests are all free. Cant complain too much i
> guess.

I think you *should* complain!

You may want to research something called IP6 and cancer on Medline,
too. I learned about it recently for a relative with prostate cancer.
It's safe and very effective, but without a drug company standing to
profit, it's not well known. There's a lot of good peer reviewed
resarch about it.

Good luck, Pam.

Susan

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Elly Byrne - 13 Jul 2006 08:37 GMT

>I am a newbie here. (43 y/o female) I have recently been diagnosed
>with severe hearing loss in my right ear, and pulsatile tinnitus. I
[quoted text clipped - 3 lines]
>scared by the information i have found so far. Has anyone dealt with
>similar symptoms?

Hi Pam,

Hearing loss (which is not the same as hearing damage) occurs quite
often. It is not necessarily serious.

You may or may not have a tumor of some description. The ENT cannot
think of anything else so that is his next suggestion. A ct scan
and/or mri are also very common. They almost never reveal anything.

>It seems that i
>have a choice of surgery or radiation, both of which can cause a
>complete hearing loss on the affected side.

Your first choice is to wait and see what eventuates! There is no need
to get scared. The thought of an MRI is frightening, but truly, they
are only suggested when the doctors can't think of anything else.

Pulsatile tinnitus can have a very simple cause. I assume you have
mentioned it to a doctor who has found nothing.

You can try the biofeedback mentioned on
http://www.ent-consult.com/ears.html#tinnitus

And/or try the exercises at http://eebee.net/pt.shtml

Elly.
Elly Byrne
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from Harvey Segal
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