Another Cured Whoosher: Transverse Sinus Stenosis and Enlarged Arachnoid Granulation
Nothing makes me happier than to receive a personal story from another cured whoosher! I received this one recently from
a woman whom I will call "Jill." Her story is yet another example that many pulsatile tinnitus patients face
obstacles to proper evaluation and treatment. The writer is also very honest about the terrible - even suicidal - feelings
that some of us experience as a result of this rare symptom. On the brightest note, Jill shares an example of how persistence
really can pay off. Jill, good for you for being your best advocate! Your story will be posted along with many
others on our Cured Whooshers page. Thank you for sharing your experience, take care of yourself during this recovery, and ENJOY the SILENCE!
For
years, I’ve had this noise in my head. Loud. Whooshing. I heard a lot of doctors say, “Mm-hmm,” when I told
them I heard a whooshing in my ear. I was told I was anxious, depressed, and given Trazadone so I could sleep, told to see
a therapist (which I did), etc.
I don't remember a time when I couldn't hear the whooshing, but in the last several
years, it became unbearably loud or I became less able to withstand the relentlessness of it. The neurosurgeon doesn't think
that I was born with it. I'm not sure. It took a long time (years) for me to believe myself - that this was a real problem
that was causing me suffering. I'd say that overall, the most severe whooshing lasted for the last three years, but that's
also when I began seeking a solution so I think that my resistance and strength were waning.
I told my husband
that it sounded like a whooshing so he searched for that and found Whooshers.com. Knowing about the Whooshers.com site helped so much in my long search for a resolution.
The whooshing
drove me to tears sometimes. And, it drove me to have what I would call suicidal thoughts. It was deeply painful and because
I'm a mother and a teacher, I hesitate to write about this because of the effects that this knowledge could have on my daughter
(now grown) and on the children I teach. I do think that the truth is healing and so, in writing about these thoughts, I hope
that truth helps someone else. My whooshing was on the right side and was a 24/7/365 thing. Very loud. I teach kids so during
the day, when I was busy or the kids were noisy, I was ok. I spent a lot of time at noisy places - restaurants, cafes, roaring
rivers, you name it - wherever I could sit and focus on my work or have some relief. I could hear it in loud restaurants,
but it was more bearable.
Once, during an evening crying jag, I asked my husband if he could hear it. He
put his ear to my ear and he could hear it!
Objective Whooshing [Pulsatile] Tinnitus. I used these words
when I talked to doctors and nurses and I didn’t let them talk me out of it. I told every health care professional to
put their ear to mine, but they wouldn’t. They used stethoscopes. Most could not hear it using a stethoscope.
I talked to Dr. Halbach at UCSF in California who has had a great deal of success dealing with certain causes of whooshing.
He talked me through some evaluative “tests” – does the whooshing ever stop? Does it stop when you push
on your neck? Can you still hear it when you push on the vein behind your ear? He knew Dr. Warren at Oregon Health and Science
University. I jumped the insurance hoops and got an exam with him. My goal at that exam was to get Dr. Warren to hear the
whooshing. An intern came in first. The intern couldn’t hear it. A doctor walked into the room and I told him about
my goal. He put his stethoscope to my ear and pushed his chair back in awe of it. He heard it. He called other doctors in
so they could hear it, too.
The ENT ordered CT and MRI scans. The MRI showed narrowing of the vein on my right
side, but the cause was inconclusive so he refereed me to the neuroradiologist, Dr. Gary Nesbit. The angiogram didn’t
show anything new (or terrible – like aneurysm, etc.), but it confirmed that the original MRI picture held the most
likely answer to the whooshing: arachnoid granulation extended on the right side against the transverse sinus. The neurosurgeon
wouldn't go in without doing the angiogram because the MRI wasn't conclusive enough. It showed the narrowing, but it wasn't
clear why there was narrowing. He wanted to rule out aneurism, fistula, etc.
I was elated to have a diagnosis and
a solution. At first, I was worried about having an angiogram. My understanding was it was a risky procedure, but so was living
with the whooshing due to the extreme stress of it and the horrible effect it had on my sleep. I hadn't slept well in years.
Trazadone helped, but it wasn't a great solution. It was all worth the risk, but it was scary, too. I had the support of my
husband and daughter. They pushed me through some of these procedures when I was ready to give up. Whooshing, lack of sleep,
the relentlessness of it all wore me down in ways that are difficult to explain to someone unless they have experienced this
or something else that is chronic.
The angiogram was not fun at all. It was harder than the MRI (for the MRI,
ask for a mirror if you're claustrophobic and ask for music!). The angiogram is more invasive and strange things
happen to the brain. You're awake for the procedure, and the doctor [usually] goes into your artery through your hip. For
me it was really unpleasant, but I was on drugs that calmed me a bit. There were times when I saw lightning flashes and lots
of color combinations and it was a lot like a Pink Floyd laser light show I once went to, and once, my brain felt like it
was on fire. I looked at it as a psychedelic experience - one that I could have had if I'd ever done really hard drugs. But,
again, it was worth it. It also had to be done. It wasn't a choice if I wanted to find a solution.
In the end,
The amazing and wonderful staff at the Oregon Health and Sciences University performed an endovascular stenting and angioplasty
of the right transverse sinus. I showed up at 5:30 a.m. and had my in-patient procedure. When I woke up, someone asked me
how I was. I just smiled and kept smiling. I couldn't stop smiling, in fact. The sound was gone. I had silence. When my husband
came into the ICU, I had him listen and he couldn't hear the whooshing. He cried happy tears along with me. I recovered in
the ICU at OHSU and the people there were fantastic. I was released the next day after I slept (not perfectly because sleeping
in the ICU isn't easy, but I slept better than I had in years).
There were surgeons on the team who didn’t
understand why we were doing all of this – it’s only noise after all, they said. They are the ones who need to
hear the whooshing. If we can get doctors to listen with their ears rather than stethoscopes, they will hear it. Until that
happens, let them know that some doctors can hear it and some can’t. Make it a competition! Doctors thrive on that.
Make doctors hear your whooshing if at all possible.
I have no more whooshing. I’m so happy and relieved.
I don't like taking the blood thinners - Plavix and aspirin, but I will have to take the Plavix for six months. Blood thinners
are very important for this phase of my recovery, I am told. I don't like the bruising and the difficulty of healing from
small cuts, but it's all a very small price to pay for such a great reward. The puncture site at my hip took a little bit
of healing, but it has completely healed - it's been 3 weeks now. I have had tiny headaches from time to time and I never
suffered from them before. Again, small price to pay for such glorious silence. I’m really looking forward to decades
(hopefully) of life as a cured whoosher. I sleep!
I wish all good things for other whooshers. Don’t give
up.
