Superior Semicircular Canal Dehiscence (SSCD) - Rare or Rarely Diagnosed?
A recent story published by HuffingtonPost.co.UK explores the inspiring story of nurse-to-be Beth Rye, a 24-year-old woman
diagnosed with Superior Semicircular Canal Dehiscence (SSCD).
Pulsatile tinnitus is a common symptom of SSCD.
seen a number of high profile SSCD stories in recent years. See the Cured Whooshers page for others. Other symptoms beyond pulsatile tinnitus sometimes include vertigo, "bouncy" eyes
(as described by the patient in the story), an increased sense of one's voice (autophony) and hypersensitivity to sounds like
dishes clanking in the sink.
The piece indicates that the patient and her symptoms were initially and consistently
disregarded. She was told to "live with it" and doctors prescribed a nasal spray. She was persistent,
however, and after 10 months she received a proper diagnosis. Another example of being your best advocate! Now,
with that diagnosis, she hopes to receive treatment.
A lot more is known now about SSCD than even a few years
ago, so we hope this patient finds treatment and soon.
Treatment of Venous Pulsatile Tinnitus in Younger Women - Internal Jugular Bulb Ligation
Somewhat controversial is ligation of the internal jugular bulb as a cure for pulsatile tinnitus. What's most interesting
to me about this recently published report is the observation over time - a relatively long time for cases of pulsatile tinnitus:
Below is the abstract (summary) for the report. As always, we encourage patients to share abstracts
and reports like these with their doctors. Special thanks to the doctor who brought this one to my attention.
Announcing the UCSF Multidisciplinary Pulsatile Tinnitus Clinic!
GREAT news for the pulsatile tinnitus community!
University of California, San Francisco (UCSF) Medical Center has
recently launched and opened the UCSF Multidisciplinary Pulsatile Tinnitus Clinic, focused on clinical care and research aimed
at treating patients with pulsatile tinnitus.
Patients are encouraged to call 415-353-1863 to inquire about being
seen in the Clinic.
Read about one of the Clinic's co-directors, Dr. Matthew Amans, HERE!
[Note to Columbia University Medical Center:
pulsatile tinnitus is NOT ringing in the ears!]
From the medical literature published recently, it appears that, perhaps
like many other conditions, the discussion about proposed treatments for JPGs is evolving. The links below include recent
abstracts of medical reports that discuss methods of management and treatment of JPGs. As with many other causes, many patients
diagnosed with jugular paraganglioma are faced with a choice of treatment, and that choice can often be a very difficult one
to make. There are a number of medical reports available online about the dilemma: surgery? radiotherapy? radiosurgery?
When you're a whoosher, a diagnosis of the underlying cause of our symptom is a big accomplishment. This is just
one of many, many possible causes of pulsatile tinnitus. When the diagnosis is relatively rare, the suggested treatment may not be so straightforward. These patients
need medical support - and emotional support - to help them make the best personal decision.
All of these abstracts
are available online, with links to the full reports available from major medical publications. Share them with your doctors!
Another Cured Whoosher: Dural Venous Sinus Stenosis
This story is written by a 33 year old Cured Whoosher from South America. I'll call her Alice. Long story short: After multiple dead ends and a diagnosis of Meniere's
Disease, which didn't seem right to her, Alice read a medical report here on Whooshers.com about a cause her doctors had not considered. She noticed that her symptoms matched those of
the patients in the story, and she contacted the doctors who wrote the report. As luck would have it, she had a trip
already planned to China (!), where the doctors who wrote the report were based, so she stopped by for a visit. Her expectations
were low, but the doctors in China diagnosed her with the same cause in their report and, after considering the proposed treatment,
she was cured by the same procedure she had read had cured others. Now she's 6+ months whoosh-free. This is the
power of sharing our stories and medical reports, people. Alice, thanks very much for sharing yours. Someone out there is
reading this and will find relief because you did. Good for you for being your best advocate. Enjoy the silence! Your story
has been added to our Cured Whooshers page!
In the middle of 2009, from one day to the next, I started hearing noise in my right ear. The
best way to describe it: it was like hearing a my heartbeat through an echo machine constantly. My ear felt “full”
and the noise would gradually get louder. I thought that I had some wax buildup so I put off going to the doctor for 2 months.
When I started having problems to fall asleep because of the constant noise, I decided it was time to see my doctor.
My doctor checked my ear for wax buildup but found my ear to be clean. That’s when I started to get a little worried.
He sent me to an ENT doctor and after a sound test and some questions, I was diagnosed with Meniere’s Disease, given
some flyers with information and was told to learn to live with it. A few months passed and I was getting worse and worse
- not the noise, but my ability to function as a mom, a wife and an employee. I would be locked away in my room because too
much noise would irritate me and too much quietness would drive me nuts. I could only handle family time a few hours at a
time and was very irritable. My husband, my daughter and my family tried to accommodate me as best as they could but it was
putting such a damper on everything. After continued research on Meniere’s Disease, I did not feel comfortable with
that diagnosis because the sound I heard was constant and did not decrease at all. I also had headaches, nausea, dizziness,
loss of hearing in my right ear, exhaustion and irritability. However, I did not feel that this was the disease itself but
more a result of the lack of rest/sleep because of the constant noise.
One day, while sitting in my living
room crying my eyes out because of the frustration, my husband tried to make me feel better by saying “put your ear
on mine and let me check if I can hear it.” I wanted to hit him over the head with a baseball bat but I thought better
of it and put my ear next to his not expecting anything to happen. I was already at the phase where I started to believe it
was all in my head. He was quiet for a few seconds and then started to make a same whooshing noise I was hearing. It was such
an elation to know that I was not crazy and that someone else could validate this. We both cried afterwards and decided to
get a second opinion.
In January 2012 we went to Duke University Medical in North Carolina. After a week of
testing and an angiogram, I was told that I did not have Meniere’s Disease but Objective Pulsatile Tinnitus. My pulsatile
tinnitus was objective because when you put your ear against mine, you could actually hear it. None of the doctors had ever
experienced the sound for themselves. They told me that there was nothing they could do for me, but at least I had a diagnosis.
They advised me on some tinnitus medication, a hearing aid to help block the noise and a sleeping aid (Diazepam) to help me
sleep at night. [Oops, pulsatile tinnitus is not tinnitus, doctors!!!]
I came back home and almost accepted
my fate. I told my husband that I don’t think I can continue doing the job that I am currently doing and love dearly
for much longer and would much rather use the little energy that I have on my family.
wrote an email on April 9th to Dr. Li Baomin describing my situation, not really expecting a reply anytime soon but got one
three days later. Dr. Li Baomin requested I do an MRV of the “sigmoid sinus and transverse sinus” and send him
the images. On April 18, 2014, I received the best email of my life. It was just two sentences and it said, “I have
seen your MRV, and I found a stenosis in your right venous sinus. I want to know whether your pulsatile tinnitus is
in the right side. I can cure your [pulsatile] tinnitus if your [pulsatile] tinnitus is in the right side. Thank you for your
trust." [NOTE TO DOCTOR - It's not TINNITUS! It's PULSATILE TINNITUS]
I could not believe what I was
reading! I was so happy but also still a little nervous because it just sounded too good to be true. I had already planned
a trip to China so I made arrangements to fly to Beijing and have an appointment with Dr. Li for April 28th. I stayed in a
hotel that was a 10 minute walk to the hospital. Dr. Cao (Dr. Li’s assistant) met me and brought me up to meet Dr. Li.
The plan was just to meet with the doctor and if I felt comfortable enough, plan another trip later in the year to have a
procedure done. The doctors sat with me for three hours to explain everything and answer the long! list of questions I had.
I had brought a translator with me but that seemed to be unnecessary as we were able to communicate in decent English. They
gave me the option to do the procedure during this trip or come back later, whatever I was comfortable with.
went back to the hotel, discussed it with my family, and two days later I was admitted to the hospital. I was put through
many different tests to check my health. They checked for tumors, blood clots and everything in between. I was put on blood
thinners, and on May 12th I did the procedure which only took 2 hours. They had five specialists in the operating room with
me, just in case there were any complications, which thank God there were none. I felt very safe and secure. The nursing staff
was unbelievably caring, and my hospital room looked more like a hotel room. Even the hospital food was some of the best Chinese
food I had ever had. My husband was allowed to sleep in my room with me and visiting hours were very flexible. I stayed in
the hospital for 10 days after the procedure and was then allowed to fly back home. The hospital staff was very thorough and
caring! All in all, an amazing experience considering the situation.
I am happy to say that I am now living without the pulsatile tinnitus for over six months. I feel amazing, I’m
able to be the mom and wife I want to be and I am so happy that I won’t have to stop doing something that I love!!
Thank you www.whooshers.com for posting the article!!! I don’t want to think about how my life would be if I did not find this article.
p.s. I have added some pictures!
The first picture is the stenosis and the last picture is a stent to relieve