Baby Steps Toward a Cure, by Blondie from Tales From Clark Street
It’s been three years (almost to the day) since I went to have a CT Angiogram for my ear whooshing.
I was given the dreaded news: I was “unremarkable.” For that story, click here.
I’m amazed when I think back
to that day—when the whooshing was so new and foreign and scary as hell. It had been a year since the whoosh began.
I felt defeated. And so very sad.
Flash forward to today—March
2010. I’ve been whooshing for FOUR YEARS?? Seriously?? Yes, yes I have. And once again, I’ve decided to try to
do something about it.
About six months ago, I called the head of
vascular surgery at a nearby hospital. Since the whooshing is in time with my heart, I thought the vascular route was a good
way to go. Arteries? Veins? CHECK! Whoosh, whoosh, whoosh!
I sent
a slew of emails to this kind surgeon and he agreed to take me on. After trying to get my CT results from Chicago (waiting…
waiting… months go by… machines…push this button), I gave up and decided to start fresh. Today, I called
to make the appointment. It will be Monday, April 5th. Wish me luck.
This
time, I’m having an MRI. I’ve been told this will take an hour to an hour and a half, so I’m getting sedation.
(Pauses to freak out. Deep breaths.) The MRI will be a big tube that I lie in VERY STILL while magnets snap photos of my head.
The CT Angiogram was a shot of dye in my arm and 10 minutes of a half-tube taking pictures of my head. I’m not a doctor,
so I have NO idea what the difference is in these tests. What I do know? I have a $3,000 deductible. (winces)
But whatever.
I’m
tired of whooshing. It’s always there. It makes me crazy. If there is someone willing to sit down and really take a
look at my cranium, I’m going to do it. With a payment plan.
This morning,
I’ve talked to two different women at the hospital with a third call to come from the sedation woman. Everyone I’ve
talked to so far has been SO NICE. Such a difference from the Evil Chicago Doctor who kicked me out after 5 minutes. As with
all things medical, it’s all about the doctor. If you can find a doctor who is willing to really listen, be curious,
daring, and understanding, then you’re golden. I heard wonderful things about this doctor from the women who set me
up with the appointment.
Once again, I’m going to go ahead and stand out
on that great cliff called Hope. Care to join me?
This site has been up for about nine months now, and many of you have written whooshers@gmail.com to tell me about your experiences with pulsatile tinnitus: how it started, when you decided to finally see a doctor, what
doctors suggested, etc.
Many of you have shared your doctors' suggestion that weight may play in a factor
in pulsatile tinnitus. More precisely, the suggestions seem to include the following: sudden weight loss or weight gain
could possibly play a role, as can being generally overweight.
Since the launch of this site, I've been asked
many times about possible cures and treatments for pulsatile tinnitus. I'm just a patient, like all of you, so I don't know
the answers. We just share our stories and learn from each other.
Many of you have written to me to tell
me that you DID lose weight at the suggestion of your doctor and, while you may feel better and healthier, the weight loss
had no effect on your pulsatile tinnitus.
I haven't heard from anyone that losing or gaining weight
changed their pulsatile tinnitus, for better or worse.
The only exception to this might be when I've heard from pregnant
women. Pulsatile tinnitus affects some pregnant women but typically disappears after birth. But since not ALL
preganant women experience pulsatile tinnitus, I'm not convinced that it's a weight issue. I just don't know.
There is an older Whooshers.com post about pulsatile tinnitus and pregnancy here.
Of course, it's possible that once someone doesn't experience the whooshing anymore, they never visit a site
like Whooshers again or discuss their whooshing past with anyone. But I really would like to know: has losing weight
made anyone's pulsatile tinnitus go away? Do doctors have proof or studies that show results?
If you have
a heart attack because your cholesterol is too high, your doctor has an obligation to tell you to eat better, exercise more,
etc. But if doctors don't KNOW that losing weight will make the pulsatile tinnitus go away, wouldn't it be better if
they say, okay, try to lose some weight AND while you're trying that let's do some more tests and try X?
Putting
aside for a moment the difficulty of living with pulsatile tinnitus, can we talk about the elephant in the room? When
you finally make an appointment with a doctor to examine your whoosh, and the doctor tells you that you need to lose weight,
you're likely to feel ashamed, mad at yourself and just plain sad. Most of us who need to lose weight KNOW we need
to lose weight.
Plus, some of us gain weight as a direct result of the pulsatile tinnitus. Why?
Because when our heart rate increases, the whooshing gets faster and louder. MUCH louder. It feels like our head
may explode. Even as irrational as that may be, the feeling inside our heads when this happens simply can not be ignored.
We don't like it. If banging your head against the wall hurts, then you stop banging your head against a wall.
Exercising, to some of us, is like banging our head against the wall.
Look, if losing weight will stop the whooshing,
I can't think of a better motivation to drop the pounds. My concern is, some very distraught whooshers are being told
that their weight is the issue here, and I haven't really seen or heard any evidence that losing weight helps relieve the
whooshing. So what we have is a situation where a whoosher, already distressed from the effects of pulsatile tinnitus, has
to deal with the shame and struggle of losing weight (maybe something that s/he has already tried to do in the past), and
the feeling that pulsatile tinnitus is all their fault. When it's not.
I would love to have a larger discussion
on this issue, with pulsatile tinnitus sufferers who have been told to lose weight, and DID. Did losing weight affect
your whoosh? Any thoughts?
Tinnitus - A Patient's Perspective is an article written in 2003 by Dr. Stephen M. Nagler for the medical journal, Otolaryngologic Clinics of North America.
Dr. Nagler, a tinnitus sufferer, describes how the onset of tinnitus affected his career and family, and how dealing
with tinnitus over time changed his identity as a man, doctor and surgeon. He experiences non-pulsatile tinnitus, but
sufferers of pulsatile tinnitus can certainly identify with the debilitating effects, frustrations and fears he describes.
For his audience of colleagues in the medical field, he nicely sums up just what each of us is looking for: compassionate
care. All tinnitus sufferers deserve that.
Take a few minutes to read the piece. I think
you'll be glad you did.
Dr. Nagler, if you're reading, thank you!
Note: the link takes you to the article
posted on Mr. Nagler's Web site; I'm not sure whether he still manages that site.
