 Re: New SHL - would appreciate feedback
On 14 Jul 2006 23:32:56 -0700, "Ken" <kkerrison@ozemail.com.au> wrote:
>So, as you have done, I pressed my [ophthalmologist] and this yielded s
ome possibilites
>which 'might' help.
Ken,
What was very gratifying to me was that my ENT was truly open to
information. It's nice we both had doctors who were willing to work
with us. I've run across so many doctors who feel put off if not
downright angry when a patient even presumes to make a suggestion, or
even ask "too many" questions. In my case, after being told on Monday
(24 hours into the SHL) that steroids were the only known treatment to
make any statistically significant difference, and having had a very
bad reaction to steroids about 15 years ago, there was no way I was
going to risk that again. He concurred. He told me that there were a
number of other tests that could be done, but he did not recommend
them because, as he put it, they would just spend my money for me.
But he did want an MRI just to rule out something worse, and a more
definable cause. I found that very reasonable (even with the quick
$100 deductible it cost me unexpectedly).
I have to say, I was rather impressed with him. Having already done
some internet research sitting at home all day Sunday (day 1 of SHL),
I already knew that given my symptoms, I almost certainly had ISSHL,
or SSNHL, depending on what a given article/author called it. And I
also knew that there were no statistically significant tests or
treatments beyond steroids plus an MRI as a very responsible "just in
case" diagnostic tool. So many doctors want to just run every test in
the book - sometimes I think they must be on the boards of every lab
and testing center in the area, or else they get commissions. <<g>>
But by Wednesday (day 3) I'd found a considerable number of articles
about the intratympanic (IT) steroid injections for those for whom
systemic steroids are not a viable option. I found one particular
article by a couple of major university medical college
professors/researchers, was impressed by it, and decided I had
absolutely nothing to lose. I emailed both, one of whom apparently no
longer works at that major educational institution (a name everyone
would know). I explained in the letter that I was in no way asking
for personal medical advice, that I work at a hospital and fully
understand that would be inappropriate to expect such an answer since
they had never evaluated or even met me. I was only asking if there
was an update on the IT steroid treatment, and one additional
question. Frankly, I didn't expect either one to even bother to
reply. One bounced as a no longer valid address almost immediately.
But amazingly, less than three hours later, the other author (a major
researcher in that field) emailed me back with a detailed full page
response. He concluded with a P.S. that stunned (and thrilled) me, to
be quite honest: "If this was my ear and I could not tolerate oral
steroids, I would DEFINITELY take a course of IT steroids." Now that
was about as close as he could come to a personal recommendation,
without leaving himself open for a malpractice suit down the road,
potentially. And I was truly grateful for it. Assuming my diagnosis
was correct (and my ENT was very certain of it - too classic not to
be, most likely), I had what amounted to a direct recommendation by
one of the top people researching my condition. You don't get any
better than that! (Plus, it was free!!) If you don't ask, the answer
is "no" anyway, so I went for it and won.
I stayed up late that night doing further research and ended up
sending a fax to my own ENT, asking him to call me in the morning when
he got my fax - which included the research MD's email to me. He did
indeed call me the next morning before 9:00, and said he'd read the
email, and would certainly consider IT steroids, even though he had
not done it before. He immediately offered to refer me to a major
university medical center about 3 hours from here where they have a
neurotologist - I'd never heard of that specialty before. I told my
ENT - who I'd just met Monday filling in for the one I wanted to see
but who's unavailable right now - that if he felt competent to do the
procedure, felt comfortable that it was medically appropriate, and
wanted to do it, I had significant comfort in letting him do it. He
said he'd done other types of IT medication, and the concept wasn't
new to him, and that he felt very comfortable - both qualification and
experience wise, as well as with it being a medically appropriate
procedure. I asked when he'd like to get started. His answer was,
"Well, I'd rather not do repeated injections through the tympanic
membrane, I'd rather just put a tube in, and use that for injecting
the medication," since he'd be doing a tentative 6 injections. That
made a lot of sense to me. He also said he wanted to research the
literature more to make sure he got the right medication and dosage -
which further comforted me (no quick actions, but rather an informed
and deliberate decision).
I had no problem with him not being expert in SSNHL. I happen to be
in a medically related field, and I simply can't know all the ins and
outs of every disorder I treat, and be master of them all. But with a
little brushing up or research, there are many disorders I can treat
using the same basic skills I already use, just targeted in a
different way. His willingness to make sure he had it right rather
than jump in with both feet, plus his easy offer to refer me to a
highly specialized doc at an unrelated facility, further indicated I
was dealing with a man who took his professional oath seriously, and
put patients ahead of profits or even reputation.
When I went in Friday morning, I was armed with several pages, heavily
highlighted and marked, and I had even hand written a chart of the two
main medications used in the studies, with the various dose strengths
and quantities used in a large number of research studies. Amazingly,
one of the articles I brought in with me was the very same one he
excitedly showed me in a very recent journal he'd just received and
read (obviously he'd been doing his own research). I also brought the
films from my MRI earlier yesterday morning, which he AND his partner
reviewed for some time before he even came in to see me, just to make
sure there wasn't some more sinister problem going on before
proceeding with the procedure/treatment.
Instead of looking down his nose at me like, "Who does this patient
think he is, bringing ME the medications and dosages HE wants ME to
use?!?," he looked over the material printed from the medical
journals, spent some time with it, and said, "Well, we have this one
(of the two medications used in all the studies we'd both found), so
along with putting the tube in this morning, do you want to go ahead
and start the steroids too?" Again, I told him he was the doctor - I
had only done some personal research recognizing that he had far less
time to research just my case than I'd had over the intervening few
days since my first visit. And I reiterated that in no way did I want
to tell him how to do his job. I said that if HE thought the
treatment was medically indicated, and felt personally comfortable and
professionally competent doing it, I was ready to begin right then.
He'd put hundreds (if not thousands) of tubes in ears, knew how to
inject liquids, and knew how to read studies and other journal
articles. And he was willing to learn. That was all I needed to make
my decision. Plus, I liked his idea of using the tube, which is not
something I ran across in the several studies I reviewed. They'd
tried pumps and wicks in the past, but none of the current studies
mention doing the injections through tubes (presumably just multiple
punctures of the membane). Yep - I really like this guy.
I walked out with a rather uncomfortable ear ache, a new tube just
like my little grandson got recently, just a tiny bit of vertigo for a
couple of hours, and a real feeling of getting somewhere. I know the
odds are still quite low since my loss was total (profound), but the
steroids boost the odds at least some (statistically), and if I don't
try, I don't even give myself a chance at getting in the low-odds
group (i.e. the "miraculous recovery" group).
So often the medical profession is filled with docs that think their
first name begins with a capital "G," if you know what I mean, and
that they're higher and more almighty than anyone else on the earth
(except other deities - oops, doctors - who also start their names
with a capital "G"). Yet there are still some docs who're less
interested in a name or publications, who focus on patients, and are
willing to acknowledge that some patients actually have 3 digits in
their IQs and can do adequate research that might help make a
difference in their own cases. If we treat them with respect, don't
try to tell them how to do their jobs, but offer them additional
knowledge and options to consider, everybody wins. If I don't
reacquire a single dB of hearing, I'll still consider this a positive
medical experience because of the way in which I was treated.
Anybody who doesn't approach their own condition(s) in the same manner
is just short-changing themselves. With the internet bringing us
virtually all the latest literature that's also available to the
medical specialists, WE're the ones who are negligent if we don't get
ourselves up to speed on our own conditions as fast as possible. Then
we're in a position to better evaluate the physicians we turn to (and
their proposed solutions), and make appropriate decisions on our own
care. Any TRUE professional will respect that.
Just my long thoughts / 2¢.
C.R.
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