It was the early morning hours, the latter part of April 2003, and I
was beside myself, well beyond normal suffering due to the incessant
ringing, chirping, tapping, and wind-like sounds coming from inside my
head. Nothing
helped that I had on hand, not white noise from the radio or soft
music.
Then, I recalled a conversation I had with a friend at work. He knew
about my condition and handed me a printout of a website he stumbled
upon that offered low level laser treatments for tinnitus sufferers.
I laid it aside somewhere on my desk. "This must be God talking to
me," I thought, as I
scrounged through the mess of papers. Finally, I found it.
Advanced Energy Medicine it is called, located in Daytona Beach,
Florida. A few hours passed before I could call them to set an
appointment, after which I called in sick at my job, packed two bags
and drove from Tampa, a 2.5 hour drive east, to 1620 Mason Avenue,
Suite B, Daytona Beach, on the second floor. It was there that I
expected to receive "the most precise and advanced treatment for
Tinnitus in the world."
First, I rented a motel room not far from the "center." The first
room I was given reeked of an awful smell. The maintenance man tried
to clean it up, but they tried merely covering it with an additional
odor. After a good bit of complaining, I was finally moved below a
room that held a pack of screaming party animals, then drove to the
center.
At first, I was given a set of paperwork to fill out. One page stood
out above the rest. I was to sign it as confirmation that I
understood I would be given this new treatment as a clinical trial.
It was not as yet -- and still hasn't been -- approved by the FDA for
tinnitus treatment. I handed it to the receptionist and was then sent
one block down the street where an MRI was taken of my head. Next, an
ENT specialist located in the office near Advanced Energy Medicine, on
the same floor, examined me.
His posture and words said it all. "Do you really hold out much hope
for this? You don't think this is going to work, do you?" I could
see he considered me reasonably intelligent and not given to hoaxes.
Still, I kept to my plan, replying, "At this point, I'll give just
about anything a try."
"Good luck," he said, as he continued to examine my ears while asking
the usual questions.
One of the "techs" at the treatment office gave me a hearing test.
Another hearing test would come in a couple of days and would be
compared to the first one.
With preliminaries completed, my first laser session finally arrived.
Escorted into one of several small treatment rooms, I was asked to lie
on an ordinary examination table. Attached to a pole near this table
was the small laser machine. The laser beam was shot through a line
and expelled at a metal tip which was placed for a few minutes on
three different spots in and near my ears: my inner ear, my temple and
behind my ear on the bone.
After my first round, I went back to the motel hoping for a change.
Not much occurred. After the second round the following day, my ears
rang awfully loud. I asked the tech, a young married Jehovah's
Witness with whom I enjoyed religious chit chat, "What's the highs
mean? It's pretty bothersome."
"Don't worry," he said, "this indicates we're hitting all the right
spots." After another session, the loudness grew even worse, so the
tech's response was to decrease the time of laser treatment.
Incidentally, before each session I was given a shot of a B vitamin.
Other vitamins offered to me, I refused, as I have difficulty
digesting most supplements.
I believe it was on the third day that I was sent to see the doctor in
charge, Miraslav Prochazka, M.D. He offered his expert advice in
regards to nutritional and herbal supplements and said he had the sure
cure for IBS (irritable bowel syndrome). I listened, but knew very
well, I wouldn't be able to digest most the things he suggested.
None of the three techs with whom I was in touch, had medical
credentials. The older woman, with whom I discussed her husband's
crabbing while she administered treatments, was attending a junior
college or technical school and looked forward to graduation. She
seemed to express a feeling that her career was well on its way.
Because I departed Tampa in a mad rush, there was no one with me to
lend support. Consequently, I felt very alone and took to walking a
nearby mall, swimming in the pool, and taking long walks on the beach.
A great deal of time I spent on my cell phone talking to relatives.
After five days, I felt deeply depressed and alone. My hopes
shattered, I pleaded for my brother, who also lives in Tampa, to visit
me on the weekend.
When he and his wife arrived on Friday evening, I felt a bit revived.
They accompanied me to the tinnitus treatment center the next day and
that night we strolled the beach together. The following morning,
after the sixth treatment, I chose to return home, disappointed with
the entire endeavor.
Despite my early withdrawal, the folks at Advanced Energy Medicine
told me I can go in for more sessions as often as I want. Ten days
each year if I want them. The cost of the service may still be $800,
with health insurance.
After I was home for I while, I began to receive mail from Advanced
Energy Medicine. They requested I fill out questionnaires sent to me
periodically so the folks at AEM could keep up with my progress. When
I failed to do respond, a woman from the center would call me at home,
to whom I would often repeat, "What progress? I'm still the same."
The website information about the center, I presented to my ENT
doctor. He had a good laugh and couldn't believe such a place exists
today. "People will resort for anything," he said. During a call to
my house from one of the employees at AEM, I suggested they no longer
contact me as I've been instructed by my doctor to consider them a
bunch of quacks.
francispoon - 14 May 2004 04:24 GMT
I feel sorry for you that you are getting this kind of medical
treatment in the
most medically advanced country in the world. Prior to this, I had
thought China was inferior to the US as far as treating tinnitus
patients is concerned.
FP
=========================
> It was the early morning hours, the latter part of April 2003, and I
> was beside myself, well beyond normal suffering due to the incessant
[quoted text clipped - 111 lines]
> contact me as I've been instructed by my doctor to consider them a
> bunch of quacks.
Zuzu - 14 May 2004 11:44 GMT
> the most medically advanced country in the world.
That's debatable.
Simon Brightwell - 14 May 2004 07:29 GMT
Sorry to hear your story Dave, but found it particularly interesting reading
since I have seriously been considering low level laser treatment here in
Europe.
Here are just a couple of links. http://www.dr-wilden.de/en/index.html
http://www.laser.nu/tlc/
I have heard first hand that the one in Germany (Dr. Wilden) is extremely
successful. Unfortunately my medical insurance refuses to pay for it and it
ain't cheap!
For the moment I shall hang on as I am getting used to my T and coping with
it without any treatment.
I was wondering if anyone else in this NG had experienced successful laser
treatment for T ?
Cheers,
Simon.
ENTconsult - 16 May 2004 06:20 GMT
that is truly a very sad story.
You might have avoided this tragedy by
1. asking what university the doctor is associated with . Is he am MD or an ND
or what?
3. What has been published?
3. Ask your own doctor or specialist to call the doctor to discuss the
treatment.
Troughout history there have been plenty of honest doctors who believed they
had a "cure" that was novel and effective, but turned out later to be incorrect
but at leat they were up front about it.
And anyone who has a 98% cure of IBS would be a multimillionare overnight with
2,000 patients fighting to get in amd wpid; be tje mext mpbe; [roze winner.
Murray Grossan, M.D.
http://www.ent-consult.com
Howard N. Gutnick - 16 May 2004 12:11 GMT
fighting to get in amd wpid; be tje mext mpbe; [roze winner.
> Murray Grossan, M.D.
> http://www.ent-consult.com
I never thought of this :^))
HNG
Elly Byrne - 16 May 2004 21:11 GMT
>2,000 patients fighting to get in amd wpid; be tje mext mpbe; [roze winner.
>Murray Grossan, M.D.
Murray, are you alright?
Tinnitus is a pain in the neck
Elly's Tinnitus Resources
http://eebee.net/
http://meniere.eebee.net/
For email: elly at eebee.cjb.net
jonathan - 21 May 2004 01:28 GMT
> Troughout history there have been plenty of honest doctors who believed they
> had a "cure" that was novel and effective, but turned out later to be incorrect
> but at leat they were up front about it.
hmm. I looked at the associated links, and my oh my does it look like
quackery to me.
Laser treatment for your sinuses? laser treatment for your spine?? No
theory of how any of this stuff is doing anything (except making your
pocket lighter..)
The sad thing about this ailment is that people will do anything to
stop it, and therefore is the new frontier for all sorts of
underhanded behavior.
I'd much rather stick with tricyclics, ssri and benziodiazepenes - and
what I would give my eye-teeth for is a simple list of them with a few
data points associated with each of them:
- name of drug
- percent of patients (on average) who received
tinnitus benefit from that drug
- subjective benefit from that drug on the
tinnitus as reported by patients
- links of studies to back up these figures
Right now, I tried ativan - one night mind you. felt like somebody
clubbed me in the back of the head with a gold brick. don't know if it
helped my tinnitus at all because I was too drugged at the time - and
slept 12 hours straight, felt woozy all day.
I think I'm going to give ativan a rest.
jon
ENTconsult - 21 May 2004 04:28 GMT
which drug is best?
there is a tremendous difference in how patients react and their body
chemisty. Also the "belief" in the doctor.
Also little things like the doctor's manner can influence the reaction to the
drug.
Ellavil is a good drug and helps many .
Ativan is also a help.
Xanax has the highest % of published articles for help with Tinnius.
But there is no question that the enthusiasm and care of the doctor has a big
effect. One doctor writes tremendous cure rate using proteolytic enzymes. I use
these every day for other uses and feel they are useless for Tinnitus.
Gapapentin is one many doctors are enthusiastic about and has been written
about. Seems to have the least side effects. The company that makes it just got
fined by FDA because everyone is using it - usually successfully - for non FDA
approved uses.
To me the biggest problem is that many studies don't define and measure
Tinnitus.
30 years age I counted 25 articles on Migraine where no one defined Migraine
either!
In summary, if your doctor feels his meds may work, and if you have confidence
in him/ her, there are drugs that may help you. Unfortunaely you can't pick up
the PDR and look up Tinnitus cure drugs.
Murray Grossan, M.D.
http://www.ent-consult.com
jonathan - 29 May 2004 16:24 GMT
> Ellavil is a good drug and helps many .
sheesh - from what I read, elavil is some heavy duty stuff. Usually it
is prescribed for very depressed people, very sedating. Is it like
pamelor?
> Ativan is also a help.
not to me.. like I said, I felt like I got hit over the head with a
hammer. Woke up with loud tinnitus in my ears. I'm generally not too
thrilled with any benzodiazepine because they look to me to be
temporary solutions and the body adapts.
> Gabapentin is one many doctors are enthusiastic about and has been written
> about. Seems to have the least side effects. The company that makes it just got
> fined by FDA because everyone is using it - usually successfully - for non FDA
> approved uses.
hmm. Gabapentin is for epileptic seizures, right? I don't see how I
could get that prescribed to me for tinnitus - who would I go to?
I noticed that you didn't mention SSRI's - I've heard that they can
help.
jon
Marktvalu - 30 May 2004 23:10 GMT
>(jonathan) states:
>sheesh - from what I read, elavil is some heavy duty stuff. Usually it
>is prescribed for very depressed people, very sedating. Is it like
>pamelor?
...................
Hi Jonathan,
All antidepressants are serious drugs.
In this age people pop prozak, zoloft and paxil like aspirin.
Elavil is just a different class of antid and less used by doctors today.
Recent studies have found though that the tricyclic antid's are still first
class in relieving severe depression.
Elavil is also great for helping people sleep.
- jean