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JD
Posted: Mon Mar 03, 2008 11:04 pm
Guest
Hi everyone. I had stereotactic radiation therapy to treat a benign
glioma seven years ago. I know that's a very aggressive treatment for
something that is (thankfully) not full-blown cancer, but the surgeon
I saw (very well published from a major university hospital in LA)
recommended against surgery because of where it is in the temporal
lobe. He felt that it wouldn't increase in size and that surgery was
too risky.

Anyway, seven years later and thankfully there have been no changes,
but the headaches on the left side of my head where treatment was and
now some inner ear problems I'm having (although the docs say it's not
caused by radiation, which I find hard to believe) are driving me
insane. Has anyone found helpful treatment for these types of
headaches? They feel like they're muscular as they respond to my
rubbing my head. My left year has felt "full" for the last year. I
guess they are more sensations then they are pain on my head.

Has anyone discovered and helpful remedies for these types of
sensations? I'm trying a few things for my ear like dyazide (which
hasn't done much!) and some bioflavanoids for my ear. If anyone has
other suggestions for either of these, please please please share!
Thank you so much for reading this.

- JayDee
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J
Posted: Tue Mar 04, 2008 6:57 am
Guest
JD wrote:

Quote:
Hi everyone. I had stereotactic radiation therapy to treat a benign
glioma seven years ago. I know that's a very aggressive treatment for
something that is (thankfully) not full-blown cancer, but the surgeon
I saw (very well published from a major university hospital in LA)
recommended against surgery because of where it is in the temporal
lobe. He felt that it wouldn't increase in size and that surgery was
too risky.

Anyway, seven years later and thankfully there have been no changes,
but the headaches on the left side of my head where treatment was and
now some inner ear problems I'm having (although the docs say it's not
caused by radiation, which I find hard to believe) are driving me
insane. Has anyone found helpful treatment for these types of
headaches? They feel like they're muscular as they respond to my
rubbing my head. My left year has felt "full" for the last year. I
guess they are more sensations then they are pain on my head.

Has anyone discovered and helpful remedies for these types of
sensations? I'm trying a few things for my ear like dyazide (which
hasn't done much!) and some bioflavanoids for my ear. If anyone has
other suggestions for either of these, please please please share!
Thank you so much for reading this.

- JayDee

Sorry. This sounds like a type of situation where an ENT should be
spending quite a bit of time asking you a long list of questions to
further clarify the problem(s) (ie diagnostics). Same with a neurologist,
unless they always occur at the same time.

Have you tried these places?
http://www.tbts.org/ brain tumor support.

http://braintrust.org/services/support/
The Braintrust Healing Exchange runs a number of online support groups,
foremost among which is the BRAINTMR mailing list.

http://braintrust.org/services/support/othergroups/
The following is a list of support and information groups run by The
Healing Exchange BRAIN
TRUST. These are special interest online community email groups. They
operate a bit
differently than the "big" BRAINTMR list.


If you tell them where you live, they may have ideas (as to the causes, or
what might help) or recommendations as to who to see, in your area.
Best wishes,
J
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JD
Posted: Tue Mar 04, 2008 1:36 pm
Guest
On Mar 4, 2:17 pm, The Bobert <nob...@nowhere.nowhow> wrote:
Quote:
In article
6b0a51b1-e860-4aa6-a839-c70d32c16...@s19g2000prg.googlegroups.com>,

 JD <jasonsj...@mail.com> wrote:
Anyway, seven years later and thankfully there have been no changes,
but the headaches on the left side of my head where treatment was and
now some inner ear problems I'm having (although the docs say it's not
caused by radiation, which I find hard to believe) are driving me
insane. Has anyone found helpful treatment for these types of
headaches?

I had similar symptoms.  Cleaning the wax out of my ears fixed them.  

I also had stereotactic radiation via Cyberknife.  One of the selling
points about CyberKnife is that it targets the specific tumor and not the
whole head. Same (I assume) for Gamma-knife.  You didn't say which flavor
you had.

J's suggestion is Sound.  See an ENT specialist.

--
Hey! It compiles. Ship it.

Bob in Central California

I saw two ENT's actually and even had a balance test. The only finding
was that my vestibular numbers were off on the left side - something
about "45" instead of "30", which is normal. Anyway, the ENT told me
this isn't really bad and that he's ruled out everything serious with
that test and his exams. After explaining that in addition to the
fullness feeling I sometimes feel like I'm floating around, he gave me
some exercises to do that apparently help re-sync my eyes and ears and
he's trying a diuretic called dyazide - I haven't seen anything yet.
I'm also trying some lemon bioflavanoids that are good for ears. I
know that sounds silly, but I've read a lot about how effective they
are for some. The thing that worries me is the combined sensations on
the side of my head AND the sensations in my ears.

- j
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The Bobert
Posted: Tue Mar 04, 2008 6:17 pm
Guest
In article
<6b0a51b1-e860-4aa6-a839-c70d32c16d6b@s19g2000prg.googlegroups.com>,
JD <jasonsjunk@mail.com> wrote:

Quote:
Anyway, seven years later and thankfully there have been no changes,
but the headaches on the left side of my head where treatment was and
now some inner ear problems I'm having (although the docs say it's not
caused by radiation, which I find hard to believe) are driving me
insane. Has anyone found helpful treatment for these types of
headaches?

I had similar symptoms. Cleaning the wax out of my ears fixed them.

I also had stereotactic radiation via Cyberknife. One of the selling
points about CyberKnife is that it targets the specific tumor and not the
whole head. Same (I assume) for Gamma-knife. You didn't say which flavor
you had.

J's suggestion is Sound. See an ENT specialist.

--
Hey! It compiles. Ship it.


Bob in Central California
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