Pulsatile Tinnitus is Not Tinnitus - We Need a Pulsatile Tinnitus Diagnosis Code (ICD-10-CM)
Today, there is a single diagnosis code for sufferers of regular tinnitus and pulsatile tinnitus. The symptoms
are very differerent. Pulsatile tinnitus is much more rare - and potentially more dangerous - than its counterpart.
The distinctions are not subtle. Whooshers are petitioning the following organizations for a unique diagnosis
code for pulsatile tinnitus, so that our symptom may be addressed more appropriately and urgently by medical communities
everywhere.
World Health Organization
United States Department of Health and
Human Services
The National Center for Health
Statistics
American Health Information Management
Association
Simply: Pulsatile tinnitus - or pulse-synchronous tinnitus - is
not the same symptom as the regular, more common form of tinnitus. The differential diagnosis of pulsatile tinnitus is very
different from - and much more rare than - its nonpulsatile counterpart. Its medical workup is different as well.
There is a ripe opportunity to address these diagnostic classifications now, as the ICD-10-CM modifications are being developed
for implementation in the United States on October 1, 2014, to replace the current ICD-9-CM.
Unlike tinnitus, the
underlying cause of pulsatile tinnitus may often be identified and treated. Unlike tinnitus, pulsatile tinnitus may sometimes
be cured. More than half of people with pulsatile tinnitus have an identifiable cause. Pulsatile tinnitus may be the
sole symptom of a potentially dangerous condition. Patients with pulsatile tinnitus may not need to "live with it."
Indeed, in rare cases, it is the sole symptom of a potentially life-threatening condition that warrants prompt treatment.
In every case, pulsatile tinnitus warrants a thorough medical evaluation to look for known, identifiable and treatable
causes, and to exclude the possibility of a worrisome problem. For these reasons, it is especially important for doctors
to know how to recognize a patient who is experiencing pulsatile tinnitus, and to adequately distinguish and evaluate the
patient’s symptoms, while also acknowledging the effects that such a symptom may have on a patient’s quality
of life.
Unlike tinnitus, pulsatile tinnitus is rarely described as "ringing in the ears." Pulsatile tinnitus
may sound like a whooshing, swooshing, screeching, creaking, clicking or other rhythmic sound. The key that distinguishes
the sound from “regular” tinnitus is that it is a pulsing sound that is in sync with the heart rate.
Without
a diagnosis code, patients with pulsatile tinnitus are being improperly classified as part of the larger tinnitus community,
with whom they share few medical similarities, resulting in unnecessarily inadequate medical attention, diagnoses, and treatments.
A unique diagnosis code would appropriately address this subset of the tinnitus community, for whom relatively little research
and medical advocacy has been devoted.
Further, because the current ICD-9-CM 388.30 for "Tinnitus"
includes the word "pulsations," many pulsatile tinnitus patients have been told (mistakenly) by their medical
professionals that they are suffering from "tinnitus," another symptom altogether. ICD-9-CM 388.31 and ICD-9-CM
388.32, for subjective and objective tinnitus respectively, also do not acknowledge the distinctions between tinnitus and
pulsatile tinnitus, while pulsatile tinnitus may in fact be subjective or objective. In some cases, medical insurance
companies - not realizing and/or acknowledging the significance of the difference between the two symptoms - do not accept
claims for extensive diagnostic testing for a patient who is experiencing pulsatile tinnitus, because "tinnitus"
is such a common symptom with no known cure. The consequences of this to a pulsatile tinnitus patient, unnecessary
at the very least, have the potential to be devastating.
A diagnosis code for pulsatile tinnitus would convey
the crucial distinctions from regular tinnitus and increase awareness within the medical community of a complex symptom
that warrants special evaluation. A diagnosis code for pulsatile tinnitus would also begin to address the symptom
experienced by a worldwide community of "whooshers," many of whom are suffering unnecessarily by virtue of being
misclassified - misdiagnosed - as "tinnitus" sufferers.
Create an ICD for "Pulsatile Tinnitus,"
and modify ICD-9-CM 388.30, the diagnosis code for "Tinnitus," by removing the word "pulsations" from
the description.
It should be noted that the following proposed changes (ICD-10) to be implemented in the United States
in October 2014 also do not distinguish pulsatile tinnitus from tinnitus. Also, since pulsatile tinnitus is typically
related to some kind of vascular process rather than an implication of the ear apparatus itself, these proposed codes that
refer to the "ear" are even more inappropriate than the general codes in ICD-9 as categories of pulsatile tinnitus.
For the foregoing reasons, we propose the creation of respective and separate "Pulsatile Tinnitus" codes for each,
in addition to the modification(s) to the definition of tinnitus, so that descriptions of tinnitus sounds are not confused
with the distinctive sounds of pulsatile tinnitus.
H93.1 Tinnitus
H93.11 Tinnitus, right ear (ICD-9 Codes 388.30,
388.31, 388.32)
H93.12 Tinnitus, left ear (ICD-9 Codes 388.30, 388.31, 388.32)
Poll Results: Do Seasonal Weather Changes Affect Your Whoosh?
Yes: 19 votes 18.63%
No: 42 votes 41.18%
Sometimes: 6 votes 5.18%
I
don't know: 34 votes 33.33%
Other: 1 vote 0.98%
Total Votes: 102
Thanks
for participating in this Whooshers.com poll. See this and many, many other polls from the past several years on our
Poll Results page and let your whoosh be heard by voting in the lastest poll, on our homepage!
Another Cured Whoosher Story: Fibromuscular Dysplasia and Cavernous Sinus Arteriovenous Fistula
Below is a story written by another Cured Whoosher. Her diagnosis was Fibromuscular Dysplasia (FMD) and Cavernous Sinus Arteriovenous Fistula. Her story is yet
another example of the complexities often discovered in our cases. Thanks for sharing your story and enjoy the silence!
I am a recently cured Whoosher, and I would like to post my story so that it may help others.
I found your site to be very helpful to me, and it is my hope that what the doctors found for me may give others some help
as they seek the reason(s) behind the terrible noises in their head. Here is my story:
My husband and I are in our late 50's, retired, and were touring Ireland, when on February 24th at 3am I experienced
what I thought was the worst migraine of my life. The pain on the left side of my head was incredibly intense. Within hours
I began to suffer from pulsatile tinnitus, and my left eye began to turn inwards, and I could only see double looking through
both eyes. The ophthalmologist diagnosed me with Sixth Nerve Palsy, and the neurologist
and the first MRI of my head could find no reason behind the pulsatile tinnitus and the Sixth Nerve Palsy. Normally these
happen to people with high blood pressure, diabetes or head trauma. I suffered from none of those. I was told that "hopefully"
it will all right itself within a couple weeks or a couple months. My pulsatile tinnitus was also a bruit, so the doctors
could hear it with a stethoscope.
My neurologist ordered another MRI two weeks later to be sure nothing
was developing. Luckily, the person who read that MRI found a cavernous sinus arteriovenous fistula, and I was sent to a hospital
in Milwaukee which is the only place near us that would be able to help me. Fortunately, we have such a facility close to
my home. I was sent to a doctor at Froedtert Hospital and The Medical College of Wisconsin by the name of Dr. Osama Zaidat. When I took the MRI films to Dr. Zaidat, I learned that it was very unusual to find a cavernous
sinus arteriovenus fistula on an MRI, especially since mine was not presenting in the usual manner, which is that the leaking
blood affects the eye on that side, and the eye often bulges and becomes very red. The blood leaking from the fistula in my
case was going down the back and not to the front behind my eye, making this diagnosis more difficult. This was just another
one of the fortunate aspects of my case, that the MRI technician found the fistula on the MRI.
In addition,
the doctors have diagnosed me with Fibromusuclar Dysplasia (FMD), a disease that causes one or more arteries in the body to have abnormal cell development in the artery wall. As
a result, areas of narrowing (called stenosis), aneurysms, or tears (called dissections) may occur. If narrowing or
a tear causes a decrease in blood flow through the artery, symptoms may result. Many people with FMD do not have any symptoms
or signs on physical examination and are diagnosed by accident during a radiology scan for another problem. (Thus, it was
a brain aneurysm that caused the fistula and all the maddening, non-stop noises on the left side of my head.)
Knowing this, my doctors are ordering angiograms to look at the right side of my head to see if there are arteries that
may have a problem there as well. I am still suffering from the Sixth Nerve Palsy; however, my eye does seem to be getting
better, and I am hoping that it will soon track the same as the right eye, and my double vision will be cured as well.
Dr Zaidat and his team then did a brain embolization on me on April 4th. They tried a new technique using flexible
metal stents that telescope into the artery. Unfortunately, that only stopped the fistula flow by about 20%, and I awoke with
no change in the pusatile tinnitus. Just this past week, on May 2nd, I went into surgery again. This time they attempted to
go through the groin again up the venous side, but they ran into problems (I assume because of the FMD) and wound up going
from the right side of my brain to the left to the place of the aneurysm. I was in surgery for about five hours. There they
placed two coils and surgical glue which stopped the leak and the fistula. The procedure was 100% successful, and I awoke
with no pulsatile tinnitus! It was wonderful! You asked how I am feeling. The short answer
is fabulous. I have no pain and no whooshing and I have every hope that the Sixth Nerve Palsy will correct itself soon as
there has been improvement since Feb 24th. I "only" suffered from the pulsatile tinnitus for about nine
weeks before they were able to cure me. I have been very, very fortunate. Although I am
still dealing with the Sixth Nerve Palsy, I am so grateful for the care I received by such a great medical team. I have
stopped and thought very, very often during these past four days that there is amazingly no noise in my left ear to contend
with anymore, and I am so grateful for that. I am especially grateful at night as that was the worst time when all is quiet
and the noises seemed to increase in volume and variety! While all of this is pretty scary
for a person who considers herself in excellent health, there is a bit of comfort in the doctors finding out what was wrong
with me, being able to fix it for me, and having a name for it. Again, it is my hope that other people will benefit
from my experience in that if their symptoms mirror mine, they may have suggestions for their doctors for their condition
and of course, for ultimately ridding them of their pulsatile tinnitus! Sincerely,
Kathleen
Read this and other cases of cured whooshers on the ever-growing and always
inspiring Cured Whooshers page.
Real Pulsatile Tinnitus Sounds From Real Whooshers
In the last year or two, with the help of iPhones and similar devices with recording functions, many whooshers have recorded
their whooshes and sent them in to me. How neat! We already have a page with sounds similar to whooshing sounds
that I encourage everyone to explore, but I'm going to be posting more of these sound files as they come in.
I've
added the REAL whooshing sound files to the Pulsatile Tinnitus Sounds page, along with brief stories the whooshers sent with them.
As a reminder, pulsatile tinnitus can be objective
(others can hear it) or subjective (only the patient can hear it). Obviously, these files are recorded by folks with
objective pulsatile tinnitus. But, I wonder, of those people diagnosed with subjective pulsatile tinnitus, how many
actually have objective pulsatile tinnitus? Sometimes the sound can be difficult to listen to, even with a
stethoscope. Mine is objective and can be heard by others without a stethoscope, however some doctors have
had difficulty hearing it with a stethoscope. Interestingly, I haven't been able to record mine - yet.
Still trying!
Some time ago, we explored an iPhone app that might assist in recording the heartbeat sound. There are many other applications that Whooshers have used to successfully
record their whooshes; some of them are described under the REAL whooshers' audio files.
I'm compiling more,
so if you are able to record your whoosh and/or are willing to share the audio file with Whooshers.com and let me know the
program you used to record it, please email me at whooshers@gmail.com. If you're a whoosher, you may like to play these files for your family, friends and doctors, so they can hear a hint
of what whooshing sounds like! More than simply entertaining, these audio files may include clues for our doctors as
to the source of the pulsatile tinnitus. Doctors, have a listen!
