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?

Blondie

Read more Whooshers.com posts by Blondie:

"Tips for Battling the Whoosh"

"To Test or Not to Test"

and visit her blog, Tales from Clark Street.

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?  

WhooshEr

40%     One to six months

23%     Two to five years

12%     Over five years

9%       One week or less

9%       Six months to one year

7%       One to two years

Total Votes: 43

Thanks for voting, and please don't forget to answer the latest Whooshers.com poll!

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.